Weight Gain After Ileostomy Surgery - Anyone Else?

What the heck is going on?

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  Had my ileo Dec 09 ... I'm gaining weight steadily. Not good weight -- past my optimum.



My diet has changed -- very little fruit/veg, much less meat, more carbs -- these diet changes are due to how I'm able to process the food. I seem to block pretty easily.



And I'm less active (but not that much) than I was prior to the operation -- have really low energy.



I've done the calorie counting and I'm at 1200 to 1400 per day -- which isn't really high for someone my age/height/etc. Bloodwork checks out fine - no thyroid issues or diabetis.



My tummy shape has changed enough that my appliance isn't sitting/holding as nicely as it did.



Anyone else steadily gaining weight?



Thanks for any insight.

Hi Beatrice in Vancouver,
I had an ileostomy in June 2008, and it took me over 1 year to gain my energy back, mostly due to the healing portion of the small intestine. Remember, the small intestine has to take over at some point and assume the duty of the large intestine...the colon.
It takes time for this physiological change to take place, which in turn will affect your own personal rate of metabolism.
This being said, then you are back on track to gain some new weight, of course, as the body reasserts itself since the small intestine now is absorbing all the vitamins, nutrients, and minerals from the food you eat now and behaves like a colon now.
That is good for the general health of digestion at first, but in some people, extra pounds will be added as the body readjusts to the new metabolism...but then how much you eat, what you eat, and even how you eat it will dictate how your body handles the food intake in the long run.
It is important to exercise, of course, daily, and watch your calorie (food) intake each meal.
Drink plenty of water to keep hydrated and eat foods with sodium, etc., to balance your electrolytes.
How do I know so much about ileostomy post-op, Beatrice, you may ask? Well, I made it my business to look and learn from ET nurses, clinical people, reading from the Net, and just some plain common sense and my own experiences related to ostomy.
It is a continual learning process, I might add.
Hope this may help you out, Beatrice, anyway.
mike in victoria

By the way, if your current flange and bag do not quite fit over your stoma with the ostomy, I would recommend conferring with your ET (enterostomal) nurses at your local hospital in Vancouver, as these nurses are highly trained and in great demand at the present time.
So much to know about ostomy care, and they can assist in cutting out the correct flange and maybe try a new make or model as well for a more conforming fit.




I did not want to bore you with technical info...only to provide you with an informed decision based on general and personal criteria connected to ostomy care, etc.
mike

Hi Beatrice,

Yes, I did get fat last year but am now back to a more healthy weight range.

I had my permanent ileo in November 2008. When I left the hospital, I was severely underweight, so I spent 2009 rebuilding my skeletal frame and actually got some curves back (and my boobs!).

I spent 2010 in the USA and I just overate and lived high on the hog (literally, mmm bacon!) to the point where I went up two dress sizes and was definitely in the overweight range.

Since being back in Australia, I have lost most of what I gained and now feel a lot better about myself physically. With all this yo-yoing, I still felt quite healthy throughout it all; I guess I'm just lucky.

It is probably a blanket statement (and I am biased), but I think Australia's food supply is a lot fresher, healthier, and tastier than just about anywhere in the world (I have heard international chefs actually say this!), and just from my perspective, that has helped in my weight loss.

It's definitely hard to be more active when your energy levels are low. Have you tried B vitamin injections? I know many ileos don't absorb the "energy" vitamins as well as the bowel intact.

Hope you find a solution to stop expanding,
Cheers,
Jo x

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Yes, I agree - I used to eat a lot of salads and can't do that now; I eat more carbs and the weight keeps climbing. So, I have gone back to a lot of the vitamins I used to take but really miss the salads. If I find that magic pill for weight loss, I will definitely let you guys know. All I know is that I crave a lot of sugar and carbs since I had my surgery. It has taken me about a year to gain 40 pounds. I got too thin after surgery, but now I have to really figure out what to do to lose the weight and exercise, which, as you all know, is not very easy having this bag. I wish someone would come up with a special diet for people who have a bag.

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Good luck, Butterfly48.

I too am having weight gain issues. The winter here was really bad with a lot of grey, cold days and it's easy to ignore exercise at that time. I too eat a lot of carbs just to keep my energy up. My new staple drug is Imodium just to keep the diarrhea in check. Blueiis

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi.

At least you know you're not alone; just put up your post and look how many of us are responding.

I needed to gain maybe 10-20 pounds after my ileo in May 2009. Once I started drinking Ensure, that was easy. My weight seemed pretty stable, then less than a year after the surgery, my husband unexpectedly died. In about a year, I went from 100 to 150 pounds - gained 50% of my total body weight. It was so easy to lose weight when my Crohn's Disease was active! Now another year has come and gone and I'm down to 130. Depression seems to work both ways - sometimes I have to force myself to eat something; sometimes I can't stop. Since I don't drink coffee, I started having a large cup of clear soup in the morning. It kind of runs right through, but I think it has helped me cut back a little. It also seems the more I've focused on my weight, the more I gained.

Good luck.

Laurie

Hi Beatrice

I had my ileo in Nov. 2008 and like most people, needed to gain a bit of weight. Now, however, I need to stay stable and am having to watch the calories again.
I have no bag-related problems when it comes to exercise - I am just lazy.
I agree that it is harder to eat low-calorie meals because I don't absorb raw vegetables at all and bananas are the only uncooked fruit that really suit my digestive system.

I think I just got into a lot of bad habits when I had the luxury of needing to gain weight and now I will just have to be stricter on myself.

Carrie(Ireland)

Same here, was ok for 30 years—retired and stopped smoking 25 pounds ago!! I think age and activity level have a lot to do with weight gain after about age 55, ileostomy or not! My job kept me moving around all day, plus smoking; now retired and not half as active. Carbs and sweets, right on! I do eat lots of salads and vegetables, but also the other foods with it. Lucky my husband loves me either way—I was so underweight at the time of ileostomy (34 years ago), I never realized how very sick I was, so I say mine is Happy Fat! Just try and walk each day a mile or 3 or 4 and watch the serving size. I gained 60 lbs after ileostomy, lost 45 lbs at Weight Watchers 30 years ago, and had kept it off for 30 years. Weight Watchers worked then, but I was younger with a small child to run after too. Serving size is the main thing. Good luck, be happy, and feel good; a few extra pounds will not hurt you. An ET nurse should be able to help refit the appliance; mine did.
Sooziq

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Well, I agree I have put on 5 kg—sorry, pounds. I have no idea... but if you didn't put on weight after operations, then you would be in trouble. Oh, I'm craving sugar as well, like badly... Yeah, soup would be good. I couldn't have that in the morning, and yep, straight through, lololol... EXERCISE.




YEAH, I will do that tomorrow. I've been on a tablet, Lyrica, which even makes you not want to eat, BUT I keep putting it on. Grrrr, I want my old jeans back...




I'm in winter in Melbourne; it gets cold... Come on, summer, awww

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Roasted red pepper soup and broccoli cheese give me no problems eating with a slice of French bread. Mmmm. And I wonder where this weight came from!!!
Sooziq
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I am one of the people who never seems to be able to take weight off. I had to wait 2 weeks and have IV feedings before they could do my ostomy surgery. I have not figured out how I could be obese and malnourished. I have a huge appetite and I can eat as much as I want or starve, and my weight just stays the same. I try to exercise several times a week, but I just don't see any change. I also have no thyroid issues. I am reading and researching, and so far, I have realized that most of us who have taken high doses of steroids in the past are more resistant to losing or keeping weight off. I think I would rather feel good and be overweight; what's a little more baggage
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Sorry, couldn't resist the pun! It must be common because I lost 50 lbs. during surgery, and my ostomy nurse told me I would gain it back and then some. I am almost back to the top. The hard part is, I think I would have more energy if some of the weight was back off. Who has the magic pill?
Thanks for sharing,
Lisa

Hey, move over. I need more room.
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I have gone from a 30 waist to 40. I do keep them loose and wear suspenders. I was eating everything in sight to gain this weight back. Now that I have gained it and more, I have stopped eating the 1 lb chocolate bars and am trying to cut out the soda and ice cream. I stopped the energy drinks like Ensure too. I laugh when I get on the scales,
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as I try to maintain this weight.
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It must be healthy for us though.

Take care.

Wow, I'm the opposite. I had my ileostomy in May 2010, came out of the hospital at 55 kgs (20 to 25 lighter than I was pre-illness), and am currently stuck at 60 kgs despite eating high-protein meals, drinking protein drinks, etc.

I did once get as far as 64 kgs, but a dose of the winter vomiting bug earlier this year robbed me of four kilograms!

I would like to gain weight to the point where I look a little healthier. Obviously, I don't want to be overweight or anything, but it would be nice to get a little nearer to what I used to look like (providing that doesn't give me problems with the bag fitting like the OP highlighted).

Yeah, Scott, I was having problems gaining weight when I first came out of the hospital. I had gained 30 lbs and then I tried to go back to work and lost most of what I had gained. Then I started eating big chocolate bars, cheeses, soda, ice cream, and all the stuff you should not be eating, and eating three square meals a day. I had told my ET nurse and she said it was OK as I do look healthier. So once the weight was on, I started cutting back on the junk food. Try it, you may like it. Although I was steady going to the washroom, it helped me gain the weight I felt I needed. Now I am steady at about 190 lbs. Be patient and you will gain it and then some. Good luck.

Wow -- I'm sure I'm not alone!

Great ideas on activity and such... I just have to accept that my energy is low so that things will happen slowly, both with the extra activity and some pounds (hopefully) coming off.

My appetite hasn't changed - always had a good one
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.

Thanks for the reminder about portion size. Since the variety of what I can eat is limited, I do seem to be eating too much at a sitting. And I am doing the more frequent meals... so put that all together... no wonder I'm getting round!

Yes, I have gained 39 lbs in 4 years since my ileo. I had a severe colon, rectal, and small bowel injury in a surgery (which on review) did not need to be done at all. It took me 13 months to find a surgeon who would fix me the best that could be done. But during those 13 months, I was unable to eat due to small bowel adhesion obstructions. Finally, I found a doctor who removed the small bowel adhesions and did a permanent end ileostomy. This was all that could be done to save my life. Thankfully, I found someone after seeing 11 surgeons at 7 hospitals over these 13 months. I had weighed 125. During the 13 months, my weight dropped to 99 lbs. After I could eat again, thankfully, I did regain my premorbid weight. But now I am up to 139 and have got to lose at least 10 lbs.

My issue is the same as others: sweet cravings, eating mostly carbs as I cannot eat salads and the veggies I used to. Even potatoes gave me a stomal food blockage. I've been fine since I quit them. I can only eat really well-cooked summer squash. But if I have a cheese sandwich, then it seems like the bread pancakes on the stoma and only chocolate or grape juice or Bailey's Irish Cream or ice cream sugary stuff will melt the bread down so it will drop off the stoma. So, the bottom line is that we cannot eat the low-cal good roughage anymore, so we go for the carbs and sweets that are easier to get through our guts and move out easily. Does anyone else find that they have to use this method? Roseileo

Hi there,

I am in the same situation as everyone else who has an ileostomy. I had mine created on June 30, 2010, so I'm just past the 1-year mark. Since about December, I have stacked on the weight. I was never really one for eating a lot of veggies, as with my UC it affected it so much. I've always loved rice and pasta and still eat it, but since my operation, I can eat more than before and I still don't feel full. I am the biggest I have ever been and it hurts. I am trying to lose the weight so I can fit into my wedding dress. Before my surgery, I was an Australian size 10; I am, to this day, an Australian size 18-20 and I cannot stand it. My fiancé tells me that I am still beautiful, but how can I love somebody when I don't love myself? I keep asking myself this question. I know that I love him and I am forever grateful that he has stood by me throughout all of this, and if it wasn't for him, I wouldn't be here, etc. But it's that question... I am miserable all the time because I can't fit into my clothes; I just feel like crap every day. I am trying to eat more veggies and now that it's winter here in Perth, I will start to cook lamb and veggie soups, etc., but winter is the hardest time to try to lose weight, but I need to! Is there any advice anyone can give me? I've tried the tablets that help suppress your appetite; they are great but need to also drink the shakes, and they are expensive. I will be learning about all this within the next few years since I am going to be studying nursing, with gastroenterology as my specialty, but the information now would be helpful. I cry most days as I am so depressed; I need help, I really do... I saw my sister become big and then needed to have the lap band put in; I don't want to get like that. I am only 23 for crying out loud!

Hope to get some advice
Brooke =)

Yeah, I've never weighed more than 125 lbs ever. After the surgery, I eat like I did when I was a kid, a whole pizza, and still have a hungry attitude.
Before getting sick, I used to run around 2 miles a day. I've just now started back after a few months to help get back in shape. I'm almost at 150 lbs now. It's uncomfortable to weigh more than I'm accustomed to, definitely.

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  Wookie tries winter in Melbourne, colder than Perth. And yeah, I put on weight a lot. I do know what I need to do: EXERCISE. I'm taking a nerve damage tablet, Lyrica, and yep, it's very expensive at $75. And just for a kick

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side effect: WEIGHT GAIN. But a lot of us who had been sick for so long and being used to not eating and being a lot more thinner and underweight

maybe we didn't get the same chance as other people who can control weight because we never had control. Went to a nutritionist because I couldn't stop eating sugar, was told depression and to see a shrink. Didn't happen and I for sure need to get exercise. Wookie, I feel for you, hun. Size 10 is pretty small. I have not been a 10, maybe a long time ago, but see someone about the weight if it's that bad, matey. Your GP, were you taking those diet (speedy) tabs? So

bad, darlz....

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  Not giving my weight, but I was 60kg but looked shite in the face.

Mooza
I hope the Lyrca works for you, as I had no luck with it about 12 months ago after 3 prescriptions; so expensive, waste of time for me.
I didn't put on weight from it.
I just try to keep my exercise levels up to stay healthy.

Thanks, Mark. $75 - I bought 3 lots so far and am going to 2 doctors to scavenge some freebies, so yeah, I'm worried I have put on heaps. Plus, I cannot eat all day; I don't get it.....

Another chemist said they would do it a bit cheaper. It's pretty sad when I go to 3 chemists like an auction. I can't afford it either and am not sure of the side effects. Really, I don't want to know. Just seen that and also addictive... whatever that means... goes with the morphine I'm taking.....
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If I don't use it, my back feels like concrete and nothing, no pain relief works. Even got a TENS machine, all B/S.......

I don't know. I had my last op in 2008 and have been in agony with back pain ever since. Has arse lol. Rectum taken out, got Crohn's, and I was promised I would be so much better. Now, Gastro doc said we tried everything. Going to a Neurologist, spell check, and I think we don't like each other. I missed appointments I didn't know I had. No rheumatoid, he said first time, can't help me, so I didn't go back. He said I was supposed to. I don't want to pay for an MRI to tell me what the one I had at my other hospital told me. Faaaaaaaaaaak, sorry, venting. I think I'm getting sicker... But Melbourne winter or me, dunno... Thanks, Mark, for the replies. Cheers, Mare-mooza
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It took over a year after my ileostomy, but I started gaining weight. Discovered I could eat again without pain and soiling my panties (that's putting it nicely; actually, I lost all bowel control and went every 10 minutes or less). My husband would order for me in restaurants because I did not remember the foods I liked. I started walking on a treadmill and eating a proper diet and lost the excess weight and have kept it off for 15 years.

Hi, I'm just the reverse. I can't gain a pound. I lost 20 lbs before my ileo and another 30 lbs after. It is very painful for me to eat due to all the scar tissue. I've already had 2 blockages since March. The last one almost killed me; the adhesions were so bad they had to completely open me. Since this, I am in pain no matter what I eat, so I just don't. Hunger pains are less. It's hard to function when you are in pain, so if I eat, I have to take a lot of pain meds, and then I am a zombie. Be glad you can eat. I look like a corpse at 115 lbs from 150 lbs. I don't know what to do anymore. I've tried everything and so many doctors. I'm tired of being hungry, but the pain isn't worth it.

Oh Wookie2005 - I hear ya! Quite a bit older than you (56), but I have a hubby who says I'm beautiful no matter what (and I know he means it) ... but I feel like crap because of the weight gain. Libido? Menopause/Ileo/lousy body image ... we're not exactly rocking the sheets around here lately
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Yeah, I know ... it's not cancer, brain tumor, blindness ... all the really bad stuff that people have to deal with. So why is it such an issue with me and some of the other ileos?

Just came back from a week at the lake. I watched every morsel that went into my mouth. If I had a 'treat' (like a tiny slice of cake for dessert one evening) I eliminated empty calories for the next day. We hiked and walked (took a lot out of me -- my energy is poor) - more exercise than when I'm at home. Today I stepped on the scale ... up 3 pounds
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. The same slow weight gain continues.

Right now I can live in baggy elastic waist capris and loose tops for summer ... but I can't fit into my fall clothes from last year. Shit.

Briefly discussed it with my GP. Besides giving me the "you're healthy and alive and not morbidly obese - so what's the problem/don't waste my time" look -- he just said to make sure I exercise and don't eat empty calories.

Here's something that I can't understand ... the weight gain is more depressing to me than having the ileo ... weird.

My daughter had ulcerative colitis. She now has a J-pouch. She recently lost 65 lbs going to Weight Watchers. She is keeping her weight off!

Hope things go well for you!

Louise

Yes, I thought the only good thing to come out of this, and then I had a reversal and started gaining weight. I can hardly exercise; I was left with a huge hernia in my stomach. I don't even have a belly button anymore. I have hard feelings against the Dr that caused this, but I can't sue; it's been too long. I pray God to put forgiveness in my heart.

I understand I had to buy all new clothes because I lost over 100 pounds. I was in a skilled unit but refused any sweets and bread; it just fell off. I am determined to get this weight off because I have a large hernia in my stomach. It's hard to exercise when you can't hardly walk.

Even though my mom told me that my hips were getting wider, I was already self-conscious about them.

Hey Diggs, don't overwork the wrong muscles; you will be in worse shape. With all the crap we all have been through, it's hard to see the bright side all the time. But really, this is better than our worst days or day! Diggs, you may not be able to lift much, nor should you anymore. But now you can hip check with confidence, learn to use your new tools. Have some fun. For the clothes, I have about ten different sizes too; it does suck. I go to Sally Ann's. The price is right when you're swinging through these sizes at rapid speeds.


As for your praying to God, well all I can say is you're in good hands, be patient. It has been a long road, and I am not sure where I am on this journey. But I have come to terms with myself, that I will never have the lifestyle I so enjoyed. Rather, I am starting to embrace the beautiful life that now lies ahead of me. I still have plenty of bad days. Just now, I try to make my better days a little better! And I do thank God for my life. God bless all of us

Take care

Hi Diggs--I seem to have the opposite problem...I eat & eat & eat and don't gain a pound. I was a thin kid before my first surgery and at 21 only weighed 98 lbs.  I did get very heavy at one time during my last marriage....220 pounds...but it was because all the stress of a bad marriage made the pounds pile on. After my divorce the weight came off again.  I stay right are 150 pounds. But I remember how awful I felt when I was over 200lbs. Even walking was a chore and most of my fat was around my middle so I looked pregnant. Plus I had a hard time getting my appliances to stay on.  I was miserable.   Now I eat anything and everything (except seafood--can't stand the smell) and never have had problems with blockages...things just move through me really fast because I have no large bowel left.  I think the difference for me is that I had my first ostomy at 8yrs old and grew up not knowing how a "normal" digestive system works.