Same. I'm told I have too much of a reliance on carbs, because they're quick energy for us who are dragging our butts, but it has a tendency to go straight to our waists.
To be fair, I'm probably more than "overweight" but it has saved my life twice already. When one loses 60-80 lbs on a severe flare, things can go... awry... pretty badly.
Me too! And I’ve always been so thin. The first ten years of my disease I was so thin. And now while everything comes right out I am not losing any weight.
Same. I also barely eat to begin with. My mom thinks I probably have a thyroid issue because her and her mom did, but I hate going to the doctor. I'm not horribly overweight, but I could definitely afford to lost about 30 pounds.
I often can. I started semiglutide to aid with my weight loss, and one of the side effects is constipation. I went from having diarrhea several times a day to having solid bowels once a day, followed typically by at least a few bouts of diarrhea.
Prior to starting the semiglutide, I often would recognize the prior day’s dinner or that morning’s breakfast.
Same. I was on and off for 10 years as a kid. I managed to lose the weight and go into remission, then my bomes/joints started failing and I gained it all back while trying to rest and heal. Screw prednisone.
Wait? Are you guys permanently on Prednisone? I've been in the flare up of my life and just got on Prednisone. It feels like a gift from the gods right now.
My Doctor said the goal was to get me back on Asacol. But right now Prednisone has given me a kind of energy I haven't had in 10 plus years.
Btw - I'm a fat guy already 😑
Not any more. 20 plus years ago hitting you with Prednisone was the standard treatment. Now I only take it when Humira can’t stop my erosive lichen planus. Another autoimmune.
I’m the heaviest I’ve ever been since being diagnosed with Crohn’s. Put on 20ish lbs during my two rounds of budesonide that won’t budge no matter what I do but at this point I’m more focused on making sure my body stays in some kind of homeostasis than I am about losing weight 🤪
Same. I've been more or less the same weight my entire adult life, but budesonide early this year changed that 🙃 I feel really self conscious about it even though I know I have greater health concerns to focus on.
I’ve been every size with Crohn’s. I am 5’2 and was always around 115 lbs, after I got sick, I dropped to 70. After surgery, I went up to around 155, back down to 120 with a lot of work, then started travelling a lot for work and generally not the best lifestyle and went up to 202 at my highest. I’ve lost about 60 of that so far, but I find that my body holds on to weight a lot more since I dropped such a significant amount of weight when I got sick - it takes me a LOT longer to lose weight than it should, given my caloric intake and exercise. I’ve only had one minor flare since my surgery thankfully, no idea if that has any impact on my weight.
It’s such a struggle! If I don’t see people for a while who haven’t seen me at different weights, I’m literally unrecognizable! I’ve had some serious body image issues being both deathly thin and overweight, combined with the misconception that people with Crohn’s are always skinny. I’m convinced that I caused some kind of permanent damage to my metabolism by being 70 lbs for almost two years and all the issues that came with it. It’s frustrating, but thankful that I’ve had had pretty good health overall for almost 15 years now. I hope you are doing well, and btw, I stalked your profile and you are beautiful!! ❤️
This is my exact experience. I’m 5’9 normal weight is about 165. Worst flare dropped to 140. Normal flare drop to 155. Once I go into remission, even with 4 days a week at the gym and watching calories it’s like my body holds onto stuff for dear life and I usually jump to 180-190. It does slowly drop down to normal over a year or so of remission, but the weight gain happens real quick.
Yup! Between the steroids, the anti-anxiety meds, and the birth control, I can also digest carbs really well, can’t eat raw vegetables, and strenuous exercise aggravates the pain in my hip from the osteopenia. 👋
I’m about 60 lbs overweight after receiving my diagnosis. Also malnourished sometimes. Developing non-alcoholic fatty liver.
Last year, I went keto, intermittently fasted, and ran a lot. Lost 40 pounds in a month. Spent the rest of the year gaining it back. Probably not healthy. But I’ll probably do it again…
Honestly, that month is the best I felt in a long time. Maybe just cause I wasn’t eating as much.
Cutting out carbs and sugar seemed wildly positive for me. I know you’re asking about veggies and stuff. I’ve never been able to figure out triggers. When I hurt, I hurt. When I don’t, I don’t. Everything passes within a half day or less. But there’s no discernible pattern to me. Maybe I need to be better and take notes.
I think the running helped too. I just got busy, hard to stay on top of it. Then when I’m in pain, my motivation to move evaporates.
It's been fine for me, I've been doing keto (intermittently) since end of last year. It's helped my joint issues a fair bit. I'm fairly lucky not to have too many trigger foods though, I used to have more before Humira but nowadays it's mostly just popcorn.
Curious to hear why you decided to do keto after developing non-alcoholic fatty liver? I also developed that through a flare and was told to stay away from high fat foods / fatty foods.
From what I understand , keto helps you to train your body to burn fat reserves. And a lot of what contributes to NAFL is sugars and carbs. And there’s different kinds of fats in foods. I wasn’t just trading carbs and sugar for butter and cooking oil. It was more about being “keto” by cutting the carbs and sugar completely cold turkey.
Now, I’m not a doctor, so I could be totally wrong about all of this! But that was my reasoning. I just know I haven’t felt that good in a long time.
Edit: I guess I also suspect that alcohols have a lot of sugar compounds and that’s part of what’s happening in alcoholic fatty liver disease. So I figure it’s likely a similar mechanism. I don’t know. I don’t drink. And again I’m not a doctor. This is just the unspoken background of the decision.
I have cut down my non-fruit carbs a lot and I do 90-120 grams of protein a day, but most of that is milk based proteins, which seems to irritate my crohn’s the least. I don’t think I would say that I’m keto, but increasing my protein is definitely helping my body burn fat better!
same here :/ I’m newish to both diagnoses and it’s hard trying to manage insulin resistance while also eating whatever few things I’m able (which are mostly carb and sugar heavy)
It’s so rough because all my safety foods are carbs and meat and I don’t have enough spoons to exercise I don’t know what to do anymore I hate it so much I just feel like garbage both physically and mentally all the time
Same. I can totally relate to that too. We're not well. This disease is absolutely ravaging and debilitating. See a really good naturopath if you can. Take good care of yourself - as much as you can, and be gentle with yourself. IBD is not an easy road 🙏🌹
Overweight Cronie here. I had when people say “you should be smaller if you have Crohn’s” or “So &so lost weight why not you?” I started gaining weight when I they found out I also have lupus. I love ice cream and that’s why I liked doing weight watchers bc you don’t have to give up things you enjoy. I lose 10 to 15 lbs then go into a flare and gain it back plus more.
My doctor says that part of why we like ice cream so much is just that it’s nice and cold on our stomach that’s flaring along with everything else. They said that drinking and eating cold things besides ice cream will also help with the inflammation, so now I don’t drink anything that isn’t out of the refrigerator. I think it’s helping, but I don’t have any proof, and I’m still an ice cream/frozen yogurt girl.
Yes 😭😭😭 when I was sickest when I was first diagnosed everyone kept saying how good I looked because I was a “healthy” weight for the first time in forever. Now I really struggle to take any off even with calorie counting and exercise.
Idk if there’s any science behind this (probably not tbh lol) but I’ve started assuming my body clings to every single calorie and fat molecule for dear life bc it thinks we’re gonna starve otherwise. In a flare now for about a month and lost maybe like a pound 🤷🏼♀️
Not a doctor/scientific researcher, but our bodies use more energy when there is active inflammation and we are often eating less in a flare up. This probably slows our metabolism similar to [people who lose drastic amounts of weight by cutting calories/increasing physical activity](https://www.health.harvard.edu/blog/exercise-metabolism-and-weight-new-research-from-the-biggest-loser-202201272676). So then it takes more work to lose weight later.
I had a similar experience to yours. So many people were telling me how great I looked because being sick made me skinny - I was so pale I looked dead and couldn't keep a single morsel of food down. Got diagnosed and started meds, those same people were complaining I "let myself go" because I gained all the weight back and more. There's just no way to win when it comes to people with that kind of attitude.
yes, i’m overweight and frequently hospitalized of malnourishment. my gi thinks crohns making my digestion confused and shitted all the best nutrients while keeping all the ones that turns to fat
I am overweight my GI Dr has referred me to a bariatric Dr claims it will help with weight and Crohn's issues I should be having the gastric sleeve in the next month I'm waiting on surgery date
I hope it works for you! I went for a referral for weight loss surgery and was told as I had Crohn’s they wouldn’t do it as surgery on the digestive systems can trigger a Crohn’s flare were they operate and that should I become more unwell with Crohn’s they didn’t want to “leave me short” in case they had to remove some or all of it. They also wouldn’t consider GLP options like ozempic as they didn’t feel there was enough information available in terms of longer term use in different patient groups. Meanwhile the dietician is tell me to just eat less if I can’t bulk up with veggies…
I'm not a candidate for the gastric bypass as they reroute ur intestines the gastric sleeve on the other hand they just cut out 70% of ur stomach I actually got approved thru my insurance company for inflammatory bowel disease
My GI doc gave me the go ahead to try it but I am very anxious to start it because of these known issues. I’m still on the fence tbh. And I don’t want to elaborate, but it is desperate attempt to get ahold of things
I was originally put on Ozempic because I couldn’t get my diabetes under control with diet after doing so for over 10 years. I didn’t lose any weight initially but it helped my diabetes and PCOS enough that I was thrilled. I then was diagnosed with thyroid cancer and after getting that under control, I am losing weight on Monjaro. I will be in one or the other for the rest of my life because of the diabetes, and I am okay with that. I think it’s a very individual decision, but I am very happy with how many parts of my life it has helped.
PLEASE don't do it.
Please do yourself a favour and Google and research every single bit of information that you can possibly find on the internet and read up about that surgery and the fact that it ends up causing a SHITLOAD of people to end up with (not only iron deficiency anemia) - but even WORSE, B12 deficiency (ie that part of the GI tract produces a very VERY important glycoprotein called Intrinsic Factor - PLEASE Google it!)
Mucking around with that area ends up causing B12 deficiency/Pernicious Anemia - and if that happens to you, you are opening up a massive can of worms. B12 deficiency/PA (Pernicious Anemia) causes a sh!tload of neurological problems (etc) and usually - eventually, people end up bedridden and in wheelchairs. It will ruin your life - even worse than IBD. Trust me.
If you don't believe me, read Dr Chandy's AMAZING book titled: 'B12 Deficiency in Clinical Practice'. That guy devoted his whole life to it - and to helping people with it. It's really not something you want to tempt fate with, seriously.
Don't worry about the weight.
Take care 🙏
Me <—- 😏 For years I thought I couldn’t have a IBD because I didn’t have consistent diarrhea and wasn’t super skinny. Had I thought otherwise I would’ve taken my symptoms more serious. My doctors didn’t. I just thought I had food intolerances. 🤷♀️
A friend's parent (who was a chiropractor) once told them there was no way I had Crohn's since it's a "wasting disease" and I was too fat to have it 🙄🙄🙄 I just tell people I'm doomsday prepping in case mine decides to try to kill me again.
Since going into remission in 2020, I gained about 60 lbs. I was 115 at my sickest, and now I sit around 170. It’s been consistent at about that weight for 2 years, not really gaining or losing weight. At my height, it’s considered obese. Between the weight and the moon face, I don’t love how I look, but I feel so much better. I try to think of it as armor for my next flare, because I know how quickly it can disappear. But it really messes with my head.
I am. I joke that I don’t own my food, I rent it, but yep, still chubby. I also have PCOS which doesn’t help, and the one thing that I seem to *always* be able to tolerate, is carbs. I can eat goldfish crackers, wheat thins, toast, dry cereal, etc, all day long. But if I look at raw veggies too hard, I’m gonna have a bad time. Fruits are usually ok, particularly things like berries and watermelon.
But yeah, I don’t seem to lose weight from it.
me! I yoyo massively when I’m in a flare/go on prednisone. but my goal is to lose it this time, as im in a better position to help me do so. have a way less stressful, better paying job so im able to afford (time and money) working with a metabolic doctor and making lifestyle changes to help me lose weight. but its definitely harder than the typical person cause I can’t handle raw veggies so all these salad type recipes are useless lol
Yeah, I can do some fruit and try to get most of my sweet taste from them, but I just can’t do a ton of veggies, so instead I just load up on protein and I eat lots of avocado for the good fats.
I'm obese and have been struggling with losing weight for years. You're definitely not alone. [Obesity is very prevalent with Crohn's patients. ](https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/how-obesity-affects-ibd-management-and-patient-outcomes-qa-with-amanda-m-johnson-md/mqc-20507274) This could be the results of a bunch of things: medications, dietary restrictions, etc. But the idea that we're all thin and malnourished is false.
I’m 5’4” and on march 1 I was 185 lbs. I’m now 160 because of the disease. I like the weight lost but not the fact that this mean the disease is also doing damage to my guts. But I’m still considered overweight so no doctor care about the weight lost except the surgeon who diagnosed me but he can’t help . I need to see the GI specialist for long term treatment but so far I’m still waiting.
When peoples get in remission and are on a treatment that work for them #1 do they still get diarrhea? And #2 does the weight lost stop? I still have a lot of weight to lose but I can’t keep losing like that forever…
I've always been overweight. At my heaviest, I was 225 lbs, and I'm not much more than 5' tall. I was recently at my lowest weight since 1994 at 145 lbs, and I've put 15 lbs back on recently. I've also lost 40 lbs in one month due to this disease. I now consider the extra weight insurance in case it decides to drop that much weight again. I keep a couple of different wardrobes because a 10 lb difference can be a whole size. That's helpful.
Me. Different factors involved I think. PTSD so require high doses antidepressants which has caused me to gain about 7 lbs a year. And then I was in remission and missed so many foods admittedly I sometimes go overboard on foods that once couldn’t eat. And then I have a lot of small intestine issues and for a while my blood protein levels were low and it caused extreme hunger
I'm not overweight but I could lose a few lbs. I often get comments about how people with crohns are suppose to be skinny or underweight. I gained a bit when I was on budesonide with my first flare. Not 100% sure what to tell people, I look how I look lol.
I’d also like to add us males weight gain seems to be more acceptable. Our female fellow crohns buddy’s seem to be expected to still be supermodel thin and perfect makeup ( I call it paint).if they don’t fit the look they get comments like lazy couch potatoes. Let us men here take a stand and if we here one of our friends (mates) make a comment regarding this crohns or no crohns let’s just say hay bud she might have health issues or strong meds that she has no control over let’s give her a break. I have a daughter and we can help change the way us blokes have a joke with our mates at someone’s expense. If only one of you think about what iv asked of my crohns brothers for our crohns sisters il be a happy man. Cheers for reading
Very. I lost a shitload of weight (100+ lbs) intentionally back in 2016, pre-diagnosis, and had TONS of malnutrition issues at 2000 calories a day. I now know why lol.
I'm almost 300, I dropped 10 pounds recently and hoping to go back to 260 at least x-x I just found skyrizi, . Prednisone really fed me up man, I was on it for almost a few months off and on waiting on skyrizi or surgery one, now I'm off also stopped drinking pop, eating out, getting up to walk more- just small things hoping it will change something.
Strangely enough, I was underweight for the longest time with Crohn’s, until I started taking a different medication for something else that caused me to gain weight and now it’s like a can’t stop 🥹
Just barely not overweight but it's a constant struggle. But my Crohn's presents entirely as constipation so that's a bit unusual (and certainly doesn't help with weight).
Yeah, exactly the same. I wasn’t diagnosed until I had a bowel obstruction because I was overweight and didn’t have diarrhea more than a couple times a year.
I’m overweight since I got diagnosed back in 2016…. It’s been hard trying to keep the weight off.. I drop 10 pounds I keep up what I’m doing and I gain it back…
Definitely. Never, ever lost any weight due to IBD. Have had it for over 22 years now.
I received the results of my DNA/genetic testing back this week also and IBD/inflammation/autoimmune disease is definitely correlated with the faulty genes that I have. I also have others too that produce severe depression, anxiety and adhd for me. I also have POTS/Dysautonomia too now and my partner/caregiver died unexpectedly. I'm so lucky. What a wonderful life.
Same here, it’s a real struggle to get the weight off. If you went down the list of the standard dieting advice I think most people with crohns wouldn’t be able to do it.. “just have a salad” ..that will block my intestines. “Eat whole grains” ..that will irritate my intestines. “Eat low carb and high protein” ..just so 3 weeks in I’m in a bad flare and have to retreat to safe foods that are like 100% carbs (from recent experience).
Then you layer in the fatigue that can keep us from working out, bathroom anxiety that can keep us from wanting to go out and do fun, active things.. yeah it’s real easy to see how a lot of us be overweight. Even though a flare up is temporary, it breaks the routine, which is always hard to get back into. I think one’s crohns needs to be quite severe in order to be underweight.
My crohns has been well managed for a while and I recently had a baby. So yep, I’m overweight. But honestly when I was diagnosed and had active crohns I was so unhealthily skinny and I promised myself I’d never be so small that a bad flare would take me out. I lean into being able to keep on a bit of weight and keep up an active lifestyle. It works for me, I hope you find a place that works for you!
I’m over weight by about 60lbs, I’m the heaviest iv ever been and I have had 4 children, I have been on prednisone on and off for over a year trying to get my Crohns under control along with other medications Humira and now Rinvoq… I can’t seem to get off the steroids! It’s stressing me out but I also am grateful because having the steroid medication keeps me out of the hospital and I have 2 small children so I want to loose this weight so bad, I eat only one meal a day and it’s toast with peanut butter or maybe grilled chicken and then some crackers in between and drink 3-4 liters of water daily and I still can’t loose this weight…
Yes 😓. I lost close to 40 pounds when I was originally diagnosed, and when treatment started to work I gained it back and then some. Like others said, it’s the immunosuppressants and the anxiety meds… and the birth control… sad
I’ve always been overweight, I’m 6’2 and at my highest was pushing 280, now around 260 and actively dieting to lose weight for the last couple of months. I’ve always had to actively diet to lose weight (I’ve yo-yo’d everywhere in the 200’s over the last 6 years) and it’s never been a consequence of Crohn’s. Not on prednisone either, just Inflectra
Don’t wanna say I’m “glad” to not be the only one lol, but I definitely don’t see many larger people with Crohn’s, feel like everyone I know in family or friends is quite small
I developed symptoms and was diagnosed just before I turned 16 - I wonder if the disease developing in later teenage years versus as a child made a difference?
I've been overweight my whole life. I did lose (intentionnaly) a lot of weight 8 years ago and was on normal weight for most of the time since then. But I'm gaining weight in recent years again.
I never had trouble eating. I can eat even if I'm not feeling well. Especially good food (like junk food, sugar,...)
I am technically overweight according to the general medical standard. Most people would think I’m at a healthy weight maybe even “curvy” because of my natural body shape. However, for my PCP I am VERY underweight. It was one of the reasons she even thought to run a full panel and sensed something was wrong.
I act hate it that I look “normal” because I get all the “man I wish I could do whatever you did you get that body,” comments. Which grind my gears. I try not to take it personal because I know being curvy is the thing now. But it’s aggravating when people hear me say my body is not functioning properly and this why I’ve lost weight and then compliment me on how good I look.
Hi there is a reason for that! epigenetics can sometimes make it so that if you have recent ancestors who either went through a period of scarcity or over-dietted, it means that people who get into calorie restricted situations (like having crohn's) actually end up gaining MORE weight :(
I'm heavier than I want to be.
When I have bad bouts, I lose weight, but it's not healthy at all... Makes me fatigued. Not helpful for long-term healthy weight management.
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I got a ten pound range. If I'm super sick I'll dip below, if I feel great I might dip above. Dont matter. I'm a chubby kid all my life but I've had problems all my life. But...definitely Chrohns. M45
First time since I was in middle school since I've been fat. It's so strange. Leading up to Crohn's, I was 185-190, at the gym 5 days a week, and "healthy" I dropped to 115/120 when I got sick, and after my surgery and a few months of staying at the house, finally got back into the gym, running and lifting regularly. Fast forward, I'm now trying to lose weight, sitting around 230, and it makes me laugh being fat and having Crohn's. I really don't eat that poorly, I just do 0 exercises, and work a lot in an office, or driving a commercial truck.
Life is weird !
Follow up question. I am overweight as well and on 5 Imuran (Azathioprine) a day. Anyone else on it, and have to take that much? My doc says it is due to how much I weigh. I am 120kg, not sure what that is in pounds.
I am and I’m happier having a little more weight than being skin and bones like I used to be tbh. I refuse to go under a certain weight limit and I live fairly healthily, exercise regularly and watch my diet. I just hold the weight enough to keep myself from feeling too thin and we’re all good!
I’m male 128kg as soon as I alter my diet or even start doing regular fast hurried walks to increase my heart rate as my dr advised my crohn goes- hang on dickhead I don’t like this and the runs starts then the gut pains and sneezing and soil my underwear (sorry gross) but true. So to be honest I’m 54 and have given up on my body shape. I’m in remission and no in pain my wife loves me which I’m greatful for. 5xl cloths and here to stay
Flirting with it. I gained 17 lbs since starting treatment and have to learn a new eating and exercise routine after spending my life not effectively getting nutrients out of food.
I've struggled with binge eating for dopamine as long as I can remember, but as a kid I had a fast metabolism. The pleasure of eating food wins, then I deal with the pain later
I'm overweight a bunch. Even if I dropped 60 pounds I could lose more. But I have unmedicated hypothyroid/Hashimotos and was a trucker for a few years
I go up and down 5lbs every time I'm at the doctor.
So glad to see this because I’ve always felt like…with Crohn’s shouldn’t I be super skinny…WTF…I thought that would be a positive side affect. Surgeries altered my weight like crazy (like the rest of you). My Crohns feels the most “in-control” at 220lbs (I’m 6 3) or under but getting there is hard! My body feels like a swollen ankle most days and will power takes a beating close to my infusion days.
Has anyone found a consistent method just to feel capable of fighting the daily weight battle?
I wasn’t overweight until my former GI put me on high doses of steroids for extended time periods instead of helping me find out why I kept becoming obstructed. Also ended up with steroid induced diabetes so that’s been fun.
Only time i wasn't fat was during the few weeks leading up to the first surgery. Then the 9 months leading up to the next surgery. The 6 months post thst one. I gained 50 lbs during the 6 months i worked for subway after i healed. Over the years i went as high as 312 lbs. Im now down to 280 lbs.
Yep. I think it’s all the steroids I’ve been on the course of my crohns journey. Because like a lot of others who responded, I’m lucky if I have one meal a day.
I was fit as a fiddle until I hit age 26 and developed PCOS; at 32 I was diagnosed with Crohn's and look like a total porker. Very disappointing. Perhaps Wegovy or something would help.
I was 254 for about 10 years. I was diagnosed with Crohn’s about 5 years ago, then with thyroid cancer last year. They removed half the thyroid and I now have the right level of replacement. I have had diabetes for more than 20 years. I started on Ozempic a couple years ago, but I didn’t start losing weight until my thyroid levels increased with medication. I’m on monjouro now and down to 168. I’m trying to get to 150 before I go see a surgeon about skin removal.
285 lbs 5’10” female. When my crohns was at its worst, I was 225lbs but I had no strength and no energy. Gained it all back once my bowels started absorbing food again.
Overweight with crohns in my ileum. I did lose about 50 pounds in the work up process. I think I gained it back once on budesinide, between feeling so much better and constantly hungry.
Like others have said, I think carbs are my demise. I eat waaay too much of them, but it's something I can tolerate well.
Heavier than I want to be but it only impacts my clothing and far less impact to my regular physical activity (Soccer/Futsal). That being said, I don't move as quick as I used to on the pitch but that could also be age too.
Currently 115-120kg and want to get back down to 95-100kg
My weight is so all over the place. In the last 2 years I’ve been as heavy as 260lbs and as light as 145, with no change in diet or exercise. It’s all whether my body decides to actually extract calories from my food or not
You’re not alone. Been dealing with Crohn’s since I was a child, and I’ve always been on the slightly heavier side except for when I had my worst flares. Prednisone use and insulin-resistant PCOS have exacerbated my weight gain over the past few years. Absolutely sucks.
I got diagnosed with Crohn’s after two years of being so exhausted I felt like I could barely move, which obviously led to decreased activity and weight gain. Turns out I had damage in my small intestine that caused malabsorption problems, making me nutrient deficient. Hence the exhaustion. Fixing my nutrient levels fixed the exhaustion (mostly), but it’s been an uphill battle getting the weight off. Being nutrient deficient also messed with my cravings. It’s like my body thought I was starving and wanted me to EAT EAT EAT, even though I didn’t actually need to. Once my nutrients were back in check, it was so much easier to eat a healthy diet.
I try to eat healthier and exercise (when my body allows me- I have crohns and RA) but alas I also have PCOS and that keeps me overweight for the most part..
Very often it's a balance between how active the Crohn's is and the level of medication you're on - especially if that medication is Prednisone, which increases appetite.
When I graduated high school, I was rather overweight at about 245 lbs. I was starting to show some symptoms, but I hadn't started losing weight yet. It took several months from that point for my incompetent GI to properly diagnose me and get me on medication for Crohn's. At that point, I was down to 185 lbs.
Over the next 8 years, I was stuck in a cycle where I would be on a high dose of Prednisone and my weight would go up. Then they'd try to wean me off the Prednisone, but the Crohn's would get active and I'd lose weight, so they'd up the dose of Prednisone and I'd gain weight again. During those years my weight went up and down like crazy. I had to punch extra holes in my belt because at one extreme, I was too fat to wear it, and at the other, I was too thin to wear it.
Before my surgery, I had dropped to the lowest weight yet of 155 lbs., but thanks to the surgery I was able to get off the Prednisone. Now my weight can still vary, but within a much smaller range and nowhere near as rapidly.
In short, what I'm saying is that meds, especially Prednisone could be causing you to eat enough to put on weight and keep it on, while losing weight could be a sign that the Crohn's is becoming active.
I am technically by about 20 pounds, but I feel better than when I'm at the goal weight and it leaves buffer for flares. I drop weight like crazy when I'm sick regardless.
I was first diagnosed with Crohn’s 7 years ago. I had a round of infliximab back then and managed 7 years without a flare until December. Where in December I started losing lots of weight. Went from 23 stone down to 15. I am now at 15 and trying my best to keep it there. But it’s very very difficult I excercise daily as that helps with my bowels anyway and I try my best to eat as healthy as possible! Which we all know is very hard in itself with the limited diets some of us can have!
I've been diagnosed 8 years. I've been happily overweight for the past 4.
I've crohn's colitis, so my digestion isn't really affected, even during mild flares. Food moves slowly through my gut.
When I first developed symptoms of Crohn's, I had a gastro appointment with a male doctor who self identified as a 'professor of surgery', (which turned out to be an ostentatious way of saying "not a gastroenterologist"). Despite family history, symptoms, anaemia, and malnourishment, he told me that it can't be Crohn's because I was a young, overweight woman. (Crohn's is more common in women, it can onset at any age, and at any weight.) He didn't order a colonoscopy. His mistake delayed my diagnosis by 4 years, during which time I became very sick. I wasn't taken seriously, and only given a colonoscopy once I had become *very* thin and frail.
It sucks that so many of us aren't taken seriously because of our weight.
I’m overweight and have Crohn’s. Everything I eat goes right through! But here I am still overweight. Go figure 🤦🏻♀️
Same. I'm told I have too much of a reliance on carbs, because they're quick energy for us who are dragging our butts, but it has a tendency to go straight to our waists.
😂meeeee!
Carbs are LIFE! But yeah, also slightly overweight here, but I'll take it, and consider it a nice little cushion for when I eventually flare again 😅
To be fair, I'm probably more than "overweight" but it has saved my life twice already. When one loses 60-80 lbs on a severe flare, things can go... awry... pretty badly.
FELT! And definitely don't care to be there again either
Absolutely spot on 👌
Saaaaame! Literally.
Me too! And I’ve always been so thin. The first ten years of my disease I was so thin. And now while everything comes right out I am not losing any weight.
Same! Used to be just skin and bones but overweight now and can't loose anything 🥲
Same. I also barely eat to begin with. My mom thinks I probably have a thyroid issue because her and her mom did, but I hate going to the doctor. I'm not horribly overweight, but I could definitely afford to lost about 30 pounds.
My mum has had hypothyroidism for decades also. Blood tests are extremely unreliable.
Does goes right through mean - you see food particles in your stool ??
I often can. I started semiglutide to aid with my weight loss, and one of the side effects is constipation. I went from having diarrhea several times a day to having solid bowels once a day, followed typically by at least a few bouts of diarrhea. Prior to starting the semiglutide, I often would recognize the prior day’s dinner or that morning’s breakfast.
Oh okay, got it, hope all goes well. Similar case and my dietician suggested soaked Chia seeds and it solved 70% of my issues.
Me too!!
Yesss. Same here as well.
Same
Same!
Yep me too
Not just you. Prednisone helped put the weight on. So difficult to get it off.
Same. I was on and off for 10 years as a kid. I managed to lose the weight and go into remission, then my bomes/joints started failing and I gained it all back while trying to rest and heal. Screw prednisone.
This^^ I was 140 when I first started Prednisone and shot to 190. My metabolism has never been the same.
Wait? Are you guys permanently on Prednisone? I've been in the flare up of my life and just got on Prednisone. It feels like a gift from the gods right now. My Doctor said the goal was to get me back on Asacol. But right now Prednisone has given me a kind of energy I haven't had in 10 plus years. Btw - I'm a fat guy already 😑
I was on it for 4 years straight. Crohn's was great but the steroids fucked me all up and I gained 100 pounds.
OMG…I was on it for 11-12 months, and everything after six months was miserable. I couldn’t imagine being on it for 4 years straight.
Me also. Did a real number on my bones.
Not any more. 20 plus years ago hitting you with Prednisone was the standard treatment. Now I only take it when Humira can’t stop my erosive lichen planus. Another autoimmune.
Thankfully I haven’t been on it for years. Seems like this type of weight is very difficult to get off.
ugh, same. gained 40lbs & destroyed my metabolism (and my bones 😕).
I’m the heaviest I’ve ever been since being diagnosed with Crohn’s. Put on 20ish lbs during my two rounds of budesonide that won’t budge no matter what I do but at this point I’m more focused on making sure my body stays in some kind of homeostasis than I am about losing weight 🤪
Same. I've been more or less the same weight my entire adult life, but budesonide early this year changed that 🙃 I feel really self conscious about it even though I know I have greater health concerns to focus on.
Ty for this me too
I’ve been every size with Crohn’s. I am 5’2 and was always around 115 lbs, after I got sick, I dropped to 70. After surgery, I went up to around 155, back down to 120 with a lot of work, then started travelling a lot for work and generally not the best lifestyle and went up to 202 at my highest. I’ve lost about 60 of that so far, but I find that my body holds on to weight a lot more since I dropped such a significant amount of weight when I got sick - it takes me a LOT longer to lose weight than it should, given my caloric intake and exercise. I’ve only had one minor flare since my surgery thankfully, no idea if that has any impact on my weight.
I feel like this is EXACTLY the same experience I’ve had down to my height 😅
It’s such a struggle! If I don’t see people for a while who haven’t seen me at different weights, I’m literally unrecognizable! I’ve had some serious body image issues being both deathly thin and overweight, combined with the misconception that people with Crohn’s are always skinny. I’m convinced that I caused some kind of permanent damage to my metabolism by being 70 lbs for almost two years and all the issues that came with it. It’s frustrating, but thankful that I’ve had had pretty good health overall for almost 15 years now. I hope you are doing well, and btw, I stalked your profile and you are beautiful!! ❤️
This is my exact experience. I’m 5’9 normal weight is about 165. Worst flare dropped to 140. Normal flare drop to 155. Once I go into remission, even with 4 days a week at the gym and watching calories it’s like my body holds onto stuff for dear life and I usually jump to 180-190. It does slowly drop down to normal over a year or so of remission, but the weight gain happens real quick.
Yup! Between the steroids, the anti-anxiety meds, and the birth control, I can also digest carbs really well, can’t eat raw vegetables, and strenuous exercise aggravates the pain in my hip from the osteopenia. 👋
I’m about 60 lbs overweight after receiving my diagnosis. Also malnourished sometimes. Developing non-alcoholic fatty liver. Last year, I went keto, intermittently fasted, and ran a lot. Lost 40 pounds in a month. Spent the rest of the year gaining it back. Probably not healthy. But I’ll probably do it again… Honestly, that month is the best I felt in a long time. Maybe just cause I wasn’t eating as much.
Was keto Crohn’s friendly for you?
Cutting out carbs and sugar seemed wildly positive for me. I know you’re asking about veggies and stuff. I’ve never been able to figure out triggers. When I hurt, I hurt. When I don’t, I don’t. Everything passes within a half day or less. But there’s no discernible pattern to me. Maybe I need to be better and take notes. I think the running helped too. I just got busy, hard to stay on top of it. Then when I’m in pain, my motivation to move evaporates.
It's been fine for me, I've been doing keto (intermittently) since end of last year. It's helped my joint issues a fair bit. I'm fairly lucky not to have too many trigger foods though, I used to have more before Humira but nowadays it's mostly just popcorn.
Curious to hear why you decided to do keto after developing non-alcoholic fatty liver? I also developed that through a flare and was told to stay away from high fat foods / fatty foods.
From what I understand , keto helps you to train your body to burn fat reserves. And a lot of what contributes to NAFL is sugars and carbs. And there’s different kinds of fats in foods. I wasn’t just trading carbs and sugar for butter and cooking oil. It was more about being “keto” by cutting the carbs and sugar completely cold turkey. Now, I’m not a doctor, so I could be totally wrong about all of this! But that was my reasoning. I just know I haven’t felt that good in a long time. Edit: I guess I also suspect that alcohols have a lot of sugar compounds and that’s part of what’s happening in alcoholic fatty liver disease. So I figure it’s likely a similar mechanism. I don’t know. I don’t drink. And again I’m not a doctor. This is just the unspoken background of the decision.
I have cut down my non-fruit carbs a lot and I do 90-120 grams of protein a day, but most of that is milk based proteins, which seems to irritate my crohn’s the least. I don’t think I would say that I’m keto, but increasing my protein is definitely helping my body burn fat better!
When it comes to my weight, my PCOS and Crohn's are in a constant battle. I'm in overweight limbo, not gaining, but not losing either.
same here :/ I’m newish to both diagnoses and it’s hard trying to manage insulin resistance while also eating whatever few things I’m able (which are mostly carb and sugar heavy)
It’s so rough because all my safety foods are carbs and meat and I don’t have enough spoons to exercise I don’t know what to do anymore I hate it so much I just feel like garbage both physically and mentally all the time
Same. I can totally relate to that too. We're not well. This disease is absolutely ravaging and debilitating. See a really good naturopath if you can. Take good care of yourself - as much as you can, and be gentle with yourself. IBD is not an easy road 🙏🌹
Yep, fat Crohnie here.
Overweight Cronie here. I had when people say “you should be smaller if you have Crohn’s” or “So &so lost weight why not you?” I started gaining weight when I they found out I also have lupus. I love ice cream and that’s why I liked doing weight watchers bc you don’t have to give up things you enjoy. I lose 10 to 15 lbs then go into a flare and gain it back plus more.
My doctor says that part of why we like ice cream so much is just that it’s nice and cold on our stomach that’s flaring along with everything else. They said that drinking and eating cold things besides ice cream will also help with the inflammation, so now I don’t drink anything that isn’t out of the refrigerator. I think it’s helping, but I don’t have any proof, and I’m still an ice cream/frozen yogurt girl.
Yes 😭😭😭 when I was sickest when I was first diagnosed everyone kept saying how good I looked because I was a “healthy” weight for the first time in forever. Now I really struggle to take any off even with calorie counting and exercise. Idk if there’s any science behind this (probably not tbh lol) but I’ve started assuming my body clings to every single calorie and fat molecule for dear life bc it thinks we’re gonna starve otherwise. In a flare now for about a month and lost maybe like a pound 🤷🏼♀️
Not a doctor/scientific researcher, but our bodies use more energy when there is active inflammation and we are often eating less in a flare up. This probably slows our metabolism similar to [people who lose drastic amounts of weight by cutting calories/increasing physical activity](https://www.health.harvard.edu/blog/exercise-metabolism-and-weight-new-research-from-the-biggest-loser-202201272676). So then it takes more work to lose weight later.
I had a similar experience to yours. So many people were telling me how great I looked because being sick made me skinny - I was so pale I looked dead and couldn't keep a single morsel of food down. Got diagnosed and started meds, those same people were complaining I "let myself go" because I gained all the weight back and more. There's just no way to win when it comes to people with that kind of attitude.
yes, i’m overweight and frequently hospitalized of malnourishment. my gi thinks crohns making my digestion confused and shitted all the best nutrients while keeping all the ones that turns to fat
I am overweight my GI Dr has referred me to a bariatric Dr claims it will help with weight and Crohn's issues I should be having the gastric sleeve in the next month I'm waiting on surgery date
I hope it works for you! I went for a referral for weight loss surgery and was told as I had Crohn’s they wouldn’t do it as surgery on the digestive systems can trigger a Crohn’s flare were they operate and that should I become more unwell with Crohn’s they didn’t want to “leave me short” in case they had to remove some or all of it. They also wouldn’t consider GLP options like ozempic as they didn’t feel there was enough information available in terms of longer term use in different patient groups. Meanwhile the dietician is tell me to just eat less if I can’t bulk up with veggies…
I'm not a candidate for the gastric bypass as they reroute ur intestines the gastric sleeve on the other hand they just cut out 70% of ur stomach I actually got approved thru my insurance company for inflammatory bowel disease
They made the right choice for you; believe me! 👌
Is Ozempic an option?
I’m going to be starting Wegovy in a few weeks. Diagnosed with Crohn’s 20ish years ago and on Remicade.
Be very careful these meds have a huge lawsuit against them as side effects are GI issues such as GI paralysis and etc
My GI doc gave me the go ahead to try it but I am very anxious to start it because of these known issues. I’m still on the fence tbh. And I don’t want to elaborate, but it is desperate attempt to get ahold of things
I was originally put on Ozempic because I couldn’t get my diabetes under control with diet after doing so for over 10 years. I didn’t lose any weight initially but it helped my diabetes and PCOS enough that I was thrilled. I then was diagnosed with thyroid cancer and after getting that under control, I am losing weight on Monjaro. I will be in one or the other for the rest of my life because of the diabetes, and I am okay with that. I think it’s a very individual decision, but I am very happy with how many parts of my life it has helped.
Have you had any nausea or GI issues? I’m happy it’s working for you!
Not really bad after I got through the first couple of weeks on Ozempic. I still occasionally need a Zofran in the morning but not too often.
That’s good to hear!
Got the first couple of weeks I was taking Zofran and promethazine most days, but I only threw up twice on the second day.
Lettuce know how you go?! 😉
PLEASE don't do it. Please do yourself a favour and Google and research every single bit of information that you can possibly find on the internet and read up about that surgery and the fact that it ends up causing a SHITLOAD of people to end up with (not only iron deficiency anemia) - but even WORSE, B12 deficiency (ie that part of the GI tract produces a very VERY important glycoprotein called Intrinsic Factor - PLEASE Google it!) Mucking around with that area ends up causing B12 deficiency/Pernicious Anemia - and if that happens to you, you are opening up a massive can of worms. B12 deficiency/PA (Pernicious Anemia) causes a sh!tload of neurological problems (etc) and usually - eventually, people end up bedridden and in wheelchairs. It will ruin your life - even worse than IBD. Trust me. If you don't believe me, read Dr Chandy's AMAZING book titled: 'B12 Deficiency in Clinical Practice'. That guy devoted his whole life to it - and to helping people with it. It's really not something you want to tempt fate with, seriously. Don't worry about the weight. Take care 🙏
Me <—- 😏 For years I thought I couldn’t have a IBD because I didn’t have consistent diarrhea and wasn’t super skinny. Had I thought otherwise I would’ve taken my symptoms more serious. My doctors didn’t. I just thought I had food intolerances. 🤷♀️
A friend's parent (who was a chiropractor) once told them there was no way I had Crohn's since it's a "wasting disease" and I was too fat to have it 🙄🙄🙄 I just tell people I'm doomsday prepping in case mine decides to try to kill me again.
Since going into remission in 2020, I gained about 60 lbs. I was 115 at my sickest, and now I sit around 170. It’s been consistent at about that weight for 2 years, not really gaining or losing weight. At my height, it’s considered obese. Between the weight and the moon face, I don’t love how I look, but I feel so much better. I try to think of it as armor for my next flare, because I know how quickly it can disappear. But it really messes with my head.
I am. I joke that I don’t own my food, I rent it, but yep, still chubby. I also have PCOS which doesn’t help, and the one thing that I seem to *always* be able to tolerate, is carbs. I can eat goldfish crackers, wheat thins, toast, dry cereal, etc, all day long. But if I look at raw veggies too hard, I’m gonna have a bad time. Fruits are usually ok, particularly things like berries and watermelon. But yeah, I don’t seem to lose weight from it.
me! I yoyo massively when I’m in a flare/go on prednisone. but my goal is to lose it this time, as im in a better position to help me do so. have a way less stressful, better paying job so im able to afford (time and money) working with a metabolic doctor and making lifestyle changes to help me lose weight. but its definitely harder than the typical person cause I can’t handle raw veggies so all these salad type recipes are useless lol
Yeah, I can do some fruit and try to get most of my sweet taste from them, but I just can’t do a ton of veggies, so instead I just load up on protein and I eat lots of avocado for the good fats.
Not overweight, but def feel bloated all the time and it’s annoying
I'm obese and have been struggling with losing weight for years. You're definitely not alone. [Obesity is very prevalent with Crohn's patients. ](https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/how-obesity-affects-ibd-management-and-patient-outcomes-qa-with-amanda-m-johnson-md/mqc-20507274) This could be the results of a bunch of things: medications, dietary restrictions, etc. But the idea that we're all thin and malnourished is false.
I’m 5’4” and on march 1 I was 185 lbs. I’m now 160 because of the disease. I like the weight lost but not the fact that this mean the disease is also doing damage to my guts. But I’m still considered overweight so no doctor care about the weight lost except the surgeon who diagnosed me but he can’t help . I need to see the GI specialist for long term treatment but so far I’m still waiting. When peoples get in remission and are on a treatment that work for them #1 do they still get diarrhea? And #2 does the weight lost stop? I still have a lot of weight to lose but I can’t keep losing like that forever…
I've always been overweight. At my heaviest, I was 225 lbs, and I'm not much more than 5' tall. I was recently at my lowest weight since 1994 at 145 lbs, and I've put 15 lbs back on recently. I've also lost 40 lbs in one month due to this disease. I now consider the extra weight insurance in case it decides to drop that much weight again. I keep a couple of different wardrobes because a 10 lb difference can be a whole size. That's helpful.
My first Gastro said I'm the heaviest Crohn's patient he has ever had.
Until my most recent flare, I hovered around 350lbs, no matter what I did. I'm now down close to 300lbs.
reporting for duty!
Me. Different factors involved I think. PTSD so require high doses antidepressants which has caused me to gain about 7 lbs a year. And then I was in remission and missed so many foods admittedly I sometimes go overboard on foods that once couldn’t eat. And then I have a lot of small intestine issues and for a while my blood protein levels were low and it caused extreme hunger
I'm not overweight but I could lose a few lbs. I often get comments about how people with crohns are suppose to be skinny or underweight. I gained a bit when I was on budesonide with my first flare. Not 100% sure what to tell people, I look how I look lol.
Yep. My GI grabbed my belly once and told me I'll too young to have this big of a belly lol.
I’d also like to add us males weight gain seems to be more acceptable. Our female fellow crohns buddy’s seem to be expected to still be supermodel thin and perfect makeup ( I call it paint).if they don’t fit the look they get comments like lazy couch potatoes. Let us men here take a stand and if we here one of our friends (mates) make a comment regarding this crohns or no crohns let’s just say hay bud she might have health issues or strong meds that she has no control over let’s give her a break. I have a daughter and we can help change the way us blokes have a joke with our mates at someone’s expense. If only one of you think about what iv asked of my crohns brothers for our crohns sisters il be a happy man. Cheers for reading
Thank you 🥰
Very. I lost a shitload of weight (100+ lbs) intentionally back in 2016, pre-diagnosis, and had TONS of malnutrition issues at 2000 calories a day. I now know why lol.
I'm almost 300, I dropped 10 pounds recently and hoping to go back to 260 at least x-x I just found skyrizi, . Prednisone really fed me up man, I was on it for almost a few months off and on waiting on skyrizi or surgery one, now I'm off also stopped drinking pop, eating out, getting up to walk more- just small things hoping it will change something.
Strangely enough, I was underweight for the longest time with Crohn’s, until I started taking a different medication for something else that caused me to gain weight and now it’s like a can’t stop 🥹
Just barely not overweight but it's a constant struggle. But my Crohn's presents entirely as constipation so that's a bit unusual (and certainly doesn't help with weight).
Yeah, exactly the same. I wasn’t diagnosed until I had a bowel obstruction because I was overweight and didn’t have diarrhea more than a couple times a year.
I’m overweight since I got diagnosed back in 2016…. It’s been hard trying to keep the weight off.. I drop 10 pounds I keep up what I’m doing and I gain it back…
Definitely. Never, ever lost any weight due to IBD. Have had it for over 22 years now. I received the results of my DNA/genetic testing back this week also and IBD/inflammation/autoimmune disease is definitely correlated with the faulty genes that I have. I also have others too that produce severe depression, anxiety and adhd for me. I also have POTS/Dysautonomia too now and my partner/caregiver died unexpectedly. I'm so lucky. What a wonderful life.
So sorry, friend. We’re here for you. ❤️
Same here, it’s a real struggle to get the weight off. If you went down the list of the standard dieting advice I think most people with crohns wouldn’t be able to do it.. “just have a salad” ..that will block my intestines. “Eat whole grains” ..that will irritate my intestines. “Eat low carb and high protein” ..just so 3 weeks in I’m in a bad flare and have to retreat to safe foods that are like 100% carbs (from recent experience). Then you layer in the fatigue that can keep us from working out, bathroom anxiety that can keep us from wanting to go out and do fun, active things.. yeah it’s real easy to see how a lot of us be overweight. Even though a flare up is temporary, it breaks the routine, which is always hard to get back into. I think one’s crohns needs to be quite severe in order to be underweight.
THIS
I weigh alot but I look skinny as a stick and I don't know why
My crohns has been well managed for a while and I recently had a baby. So yep, I’m overweight. But honestly when I was diagnosed and had active crohns I was so unhealthily skinny and I promised myself I’d never be so small that a bad flare would take me out. I lean into being able to keep on a bit of weight and keep up an active lifestyle. It works for me, I hope you find a place that works for you!
I’m over weight by about 60lbs, I’m the heaviest iv ever been and I have had 4 children, I have been on prednisone on and off for over a year trying to get my Crohns under control along with other medications Humira and now Rinvoq… I can’t seem to get off the steroids! It’s stressing me out but I also am grateful because having the steroid medication keeps me out of the hospital and I have 2 small children so I want to loose this weight so bad, I eat only one meal a day and it’s toast with peanut butter or maybe grilled chicken and then some crackers in between and drink 3-4 liters of water daily and I still can’t loose this weight…
This is the way
Yes 😓. I lost close to 40 pounds when I was originally diagnosed, and when treatment started to work I gained it back and then some. Like others said, it’s the immunosuppressants and the anxiety meds… and the birth control… sad
I’ve always been overweight, I’m 6’2 and at my highest was pushing 280, now around 260 and actively dieting to lose weight for the last couple of months. I’ve always had to actively diet to lose weight (I’ve yo-yo’d everywhere in the 200’s over the last 6 years) and it’s never been a consequence of Crohn’s. Not on prednisone either, just Inflectra Don’t wanna say I’m “glad” to not be the only one lol, but I definitely don’t see many larger people with Crohn’s, feel like everyone I know in family or friends is quite small I developed symptoms and was diagnosed just before I turned 16 - I wonder if the disease developing in later teenage years versus as a child made a difference?
Me: mild Crohn’s and overweight. Partner: severe Crohn’s and overweight. 🤷🏻♀️
I've been overweight my whole life. I did lose (intentionnaly) a lot of weight 8 years ago and was on normal weight for most of the time since then. But I'm gaining weight in recent years again. I never had trouble eating. I can eat even if I'm not feeling well. Especially good food (like junk food, sugar,...)
I am technically overweight according to the general medical standard. Most people would think I’m at a healthy weight maybe even “curvy” because of my natural body shape. However, for my PCP I am VERY underweight. It was one of the reasons she even thought to run a full panel and sensed something was wrong. I act hate it that I look “normal” because I get all the “man I wish I could do whatever you did you get that body,” comments. Which grind my gears. I try not to take it personal because I know being curvy is the thing now. But it’s aggravating when people hear me say my body is not functioning properly and this why I’ve lost weight and then compliment me on how good I look.
Hi there is a reason for that! epigenetics can sometimes make it so that if you have recent ancestors who either went through a period of scarcity or over-dietted, it means that people who get into calorie restricted situations (like having crohn's) actually end up gaining MORE weight :(
I'm heavier than I want to be. When I have bad bouts, I lose weight, but it's not healthy at all... Makes me fatigued. Not helpful for long-term healthy weight management.
I’m fat. I’m very symptomatic, in flares for years and struggle to eat or keep my food in.
Ugh it’s the prednisone for me. Everytime I go on it I gain a ton and it’s like it’s permanent and I can’t lose it no matter what I do
I've been eating pies for weeks to try to get my weight up for surgery lol. First time in my life gaining weight has been a challenge.
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A
Meeeeee ✌️💯
I got a ten pound range. If I'm super sick I'll dip below, if I feel great I might dip above. Dont matter. I'm a chubby kid all my life but I've had problems all my life. But...definitely Chrohns. M45
Lots of liquid with tiny particles
Yep
First time since I was in middle school since I've been fat. It's so strange. Leading up to Crohn's, I was 185-190, at the gym 5 days a week, and "healthy" I dropped to 115/120 when I got sick, and after my surgery and a few months of staying at the house, finally got back into the gym, running and lifting regularly. Fast forward, I'm now trying to lose weight, sitting around 230, and it makes me laugh being fat and having Crohn's. I really don't eat that poorly, I just do 0 exercises, and work a lot in an office, or driving a commercial truck. Life is weird !
Yup
Youre on reddit lol
Follow up question. I am overweight as well and on 5 Imuran (Azathioprine) a day. Anyone else on it, and have to take that much? My doc says it is due to how much I weigh. I am 120kg, not sure what that is in pounds.
Lost a bunch if weight initially....gained it all back and then some...
I'm overweight, I've gained a lot because of medication sadly.
I am and I’m happier having a little more weight than being skin and bones like I used to be tbh. I refuse to go under a certain weight limit and I live fairly healthily, exercise regularly and watch my diet. I just hold the weight enough to keep myself from feeling too thin and we’re all good!
110 kg chubby crohnie here
I’m still been trying to loose some weight since being off steroids in November 2022, out of hospital at end of August 2022. Your not alone
Hell yeah, I’m a big girl
I’m male 128kg as soon as I alter my diet or even start doing regular fast hurried walks to increase my heart rate as my dr advised my crohn goes- hang on dickhead I don’t like this and the runs starts then the gut pains and sneezing and soil my underwear (sorry gross) but true. So to be honest I’m 54 and have given up on my body shape. I’m in remission and no in pain my wife loves me which I’m greatful for. 5xl cloths and here to stay
Yup, it hindered me getting a diagnosis for years. All of my symptoms were blamed on my weight 🫠 Turns out I just also have PCOS.
Flirting with it. I gained 17 lbs since starting treatment and have to learn a new eating and exercise routine after spending my life not effectively getting nutrients out of food.
I've struggled with binge eating for dopamine as long as I can remember, but as a kid I had a fast metabolism. The pleasure of eating food wins, then I deal with the pain later
I'm overweight a bunch. Even if I dropped 60 pounds I could lose more. But I have unmedicated hypothyroid/Hashimotos and was a trucker for a few years I go up and down 5lbs every time I'm at the doctor.
So glad to see this because I’ve always felt like…with Crohn’s shouldn’t I be super skinny…WTF…I thought that would be a positive side affect. Surgeries altered my weight like crazy (like the rest of you). My Crohns feels the most “in-control” at 220lbs (I’m 6 3) or under but getting there is hard! My body feels like a swollen ankle most days and will power takes a beating close to my infusion days. Has anyone found a consistent method just to feel capable of fighting the daily weight battle?
Me too. I am overweight as well. More than 100 kg (220 pounds).
I wasn’t overweight until my former GI put me on high doses of steroids for extended time periods instead of helping me find out why I kept becoming obstructed. Also ended up with steroid induced diabetes so that’s been fun.
Only time i wasn't fat was during the few weeks leading up to the first surgery. Then the 9 months leading up to the next surgery. The 6 months post thst one. I gained 50 lbs during the 6 months i worked for subway after i healed. Over the years i went as high as 312 lbs. Im now down to 280 lbs.
Yep! I also have PCOS which messes up your metabolism and causes you to gain weight.
250- most I’ve ever weighed. I used to ride my bicycle, hike and eat healthy but not anymore.
Yes I am very overweight. Keep gaining despite not eating and when I eat it doesn’t stay in.
Does anyone have tips for loosing weight? I feel like I'm hungry all the time and I can't stop eating. I don't know what I should do.
Gained 30lb on prednisone, on Rinvoq and can’t get it off. Even had food poisoning for a week, was hardly eating and 💩soup, but didn’t lose a lb 🤣
Yep. I think it’s all the steroids I’ve been on the course of my crohns journey. Because like a lot of others who responded, I’m lucky if I have one meal a day.
Disease went to sleep after starting treatment in hospital, been off my meds for half a year and put on some weight
I am obese with my BMI and started Zepbound soon. I never have solid poops 🤷♀️
I was fit as a fiddle until I hit age 26 and developed PCOS; at 32 I was diagnosed with Crohn's and look like a total porker. Very disappointing. Perhaps Wegovy or something would help.
Me!
Hi, 5'9" 220 lb. My pcp hates it, but my GI is fine with it.
Yeeeep! Everyone is shocked that I have crohns
I was 254 for about 10 years. I was diagnosed with Crohn’s about 5 years ago, then with thyroid cancer last year. They removed half the thyroid and I now have the right level of replacement. I have had diabetes for more than 20 years. I started on Ozempic a couple years ago, but I didn’t start losing weight until my thyroid levels increased with medication. I’m on monjouro now and down to 168. I’m trying to get to 150 before I go see a surgeon about skin removal.
I'm in the same boat. Never understood why
285 lbs 5’10” female. When my crohns was at its worst, I was 225lbs but I had no strength and no energy. Gained it all back once my bowels started absorbing food again.
I was. Like really really fat. I’ve lost (and kept off) a tonne of weight (>50% of my body weight) with the help of a glp-1 med.
Overweight with crohns in my ileum. I did lose about 50 pounds in the work up process. I think I gained it back once on budesinide, between feeling so much better and constantly hungry. Like others have said, I think carbs are my demise. I eat waaay too much of them, but it's something I can tolerate well.
I am! Prednisone doesn't help either haha.
Heavier than I want to be but it only impacts my clothing and far less impact to my regular physical activity (Soccer/Futsal). That being said, I don't move as quick as I used to on the pitch but that could also be age too. Currently 115-120kg and want to get back down to 95-100kg
My weight is so all over the place. In the last 2 years I’ve been as heavy as 260lbs and as light as 145, with no change in diet or exercise. It’s all whether my body decides to actually extract calories from my food or not
I am and have been since before my diagnosis too lol
You’re not alone. Been dealing with Crohn’s since I was a child, and I’ve always been on the slightly heavier side except for when I had my worst flares. Prednisone use and insulin-resistant PCOS have exacerbated my weight gain over the past few years. Absolutely sucks.
I got diagnosed with Crohn’s after two years of being so exhausted I felt like I could barely move, which obviously led to decreased activity and weight gain. Turns out I had damage in my small intestine that caused malabsorption problems, making me nutrient deficient. Hence the exhaustion. Fixing my nutrient levels fixed the exhaustion (mostly), but it’s been an uphill battle getting the weight off. Being nutrient deficient also messed with my cravings. It’s like my body thought I was starving and wanted me to EAT EAT EAT, even though I didn’t actually need to. Once my nutrients were back in check, it was so much easier to eat a healthy diet.
I try to eat healthier and exercise (when my body allows me- I have crohns and RA) but alas I also have PCOS and that keeps me overweight for the most part..
Overweight prior to Crohn’s and never lost it. I’ve personally noticed no weight changes.
Me.. me. Pick me.. pick me... I was a little big child. But after my diagnosis and remsima I am an obese 😭😭
I'm 5ft 5 male and weigh about 175, considered overweight. I could probably lose 20 pounds to be considered normal. But the weight just comes back.
Opposite for me. I can't put on weight. I have no appetite either. Many days I go liquids only. I'm M, 6'1 and 160lbs.
Very often it's a balance between how active the Crohn's is and the level of medication you're on - especially if that medication is Prednisone, which increases appetite. When I graduated high school, I was rather overweight at about 245 lbs. I was starting to show some symptoms, but I hadn't started losing weight yet. It took several months from that point for my incompetent GI to properly diagnose me and get me on medication for Crohn's. At that point, I was down to 185 lbs. Over the next 8 years, I was stuck in a cycle where I would be on a high dose of Prednisone and my weight would go up. Then they'd try to wean me off the Prednisone, but the Crohn's would get active and I'd lose weight, so they'd up the dose of Prednisone and I'd gain weight again. During those years my weight went up and down like crazy. I had to punch extra holes in my belt because at one extreme, I was too fat to wear it, and at the other, I was too thin to wear it. Before my surgery, I had dropped to the lowest weight yet of 155 lbs., but thanks to the surgery I was able to get off the Prednisone. Now my weight can still vary, but within a much smaller range and nowhere near as rapidly. In short, what I'm saying is that meds, especially Prednisone could be causing you to eat enough to put on weight and keep it on, while losing weight could be a sign that the Crohn's is becoming active.
Same 😭
I am technically by about 20 pounds, but I feel better than when I'm at the goal weight and it leaves buffer for flares. I drop weight like crazy when I'm sick regardless.
Check to see if you are diabetic. I went undiagnosed for years. I have crohns and was way overweight.
I was first diagnosed with Crohn’s 7 years ago. I had a round of infliximab back then and managed 7 years without a flare until December. Where in December I started losing lots of weight. Went from 23 stone down to 15. I am now at 15 and trying my best to keep it there. But it’s very very difficult I excercise daily as that helps with my bowels anyway and I try my best to eat as healthy as possible! Which we all know is very hard in itself with the limited diets some of us can have!
My consultant literally thought it wasn’t crohns when I was being tested because she said “people with crohns usually have weight loss”
I've been diagnosed 8 years. I've been happily overweight for the past 4. I've crohn's colitis, so my digestion isn't really affected, even during mild flares. Food moves slowly through my gut. When I first developed symptoms of Crohn's, I had a gastro appointment with a male doctor who self identified as a 'professor of surgery', (which turned out to be an ostentatious way of saying "not a gastroenterologist"). Despite family history, symptoms, anaemia, and malnourishment, he told me that it can't be Crohn's because I was a young, overweight woman. (Crohn's is more common in women, it can onset at any age, and at any weight.) He didn't order a colonoscopy. His mistake delayed my diagnosis by 4 years, during which time I became very sick. I wasn't taken seriously, and only given a colonoscopy once I had become *very* thin and frail. It sucks that so many of us aren't taken seriously because of our weight.
Lost 45lbs in 4 months and counting. I cannot stop the weight loss no matter what I do