Out of the Bag: Body & weight changes

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyWhen you have surgery to remove your colon and to get an ostomy, your body sometimes reacts in unexpected ways. I can’t explain why it does what it does, but when you majorly alter your body’s normal functions, then it is going to impact other things, as well. I’m sure it reacts in different ways for different people, but there’s a good chance your body will undergo some big changes, one way or another. This was something I wasn’t quite ready for prior to my surgery.

I have debated talking about this because it does not always seem acceptable for a thin person to talk about weight issues. You usually get dismissed as either being ridiculous for worrying about your weight or as bragging about how skinny you are. That’s not my intention here. I think this is an important topic and something that changed for me over the past few years that I did not necessarily expect when I first decided to have this surgery.

Simply put, I’m just kind of a small person. I was before my surgery and I still am afterwards. I am only 5’2″ (and 3/4″!) and for most of my adult life, I have weighed between 100-110 lbs. Of course there are a few outliers in there and to be even more specific, my range was really between 103-108 lbs and would fluctuate between those fairly often. That was my sweet spot. And I knew that if I got below 103 lbs that I was losing too much weight and needed to put a little more on, and if I got over 108 lbs I would start noticing it (in my face mostly) and would do what I needed to drop a pound or two. Even once I got up to 109 or 110, without weighing myself, I would know that I was a little higher than I liked to be.

But after my surgery, things started to change pretty quickly. Within just a few months, I started to notice my weight going up. The funny thing, though, is that I didn’t feel like I was gaining weight. I didn’t notice it when I looked in the mirror or think that I should lose a few pounds. (Although, I do have a couple of pairs of skinny jeans from prior to surgery that I still am unable to get on.) I finally settled in around 111-115 lbs. And that’s where I’ve remained for the past couple of years.

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What I came to realize is that the previous weight I was before my surgery was not the weight I was supposed to be. My ideal weight was never where it should be and even when I gained weight, it did not go to the places where it was supposed to go. But after surgery, my body started absorbing all of the nutrients it is meant to absorb and putting them to good use. I also began running and working out just a few months after my surgery and when you increase your muscle mass it also increases your weight. So that’s weight I do not mind putting on.

My point here is to show that very quickly after having my colon removed, I gained about 8-10% of my previous body weight while changing very little else. And while this is how my body reacted, I’m sure there are many different stories from other people. I’m sure there are people who lose weight after finally being able to get off steroids and by feeling good enough to be more active. And other people who put on a ton of weight now that they are able to eat like a normal person again and because their body is actually absorbing nutrients like it should

Not having a colon will change the way your body behaves. Also, not having the inflammation surging inside of you will change it even further. So be prepared for however your body might react and whatever direction your weight might go. But also realize that putting on a few pounds is not always a bad thing and could be a sign of your body getting healthier.

How has your body changed after your surgery? Did you notice any significant shift in your weight? Or your shape?

76 thoughts on “Out of the Bag: Body & weight changes

  1. Beth Woodward

    I had my colostomy 1/28/15 and have lost 20 pounds since my surgery. Mostly muscle tone bc of being so sick after surgery and not able to really eat until the last couple days. To begin with I was the opposite of most people needing ostomy surgery bc my crohns was technically in a remission but my perianal disease and fistula were incurable, and I developed antibodies to remicade……add yeARS of eating my safe foods aka carbs and rarely leaving the comforts of home I was 20lbs over weight. I have a slow low output ostomy, and have been on a strict laxitive/stool softener regiment since my second hospitalization last week for a blockage (ended up being pills!!) With each day I can eat a bit more. Hoping to find a balance. I would like to keep the 20lbs off but build my muscle tone up to a healthy amount. With time I suppose. Its not even been a month since my end sigmoid colostomy and proctectomy. Its also been 3 months of no crohns medications (remicade for 16 years) so I’m interested to see what happens with inflamation from the trauma of surgery with time too 🙂 I love this blog…..it’s been my go to for almost every question I’ve had during the decision process, prepping process and post surgery process!!! Thank you.

    Reply
    1. Stephanie Hughes Post author

      Hi, Beth. Thank you for sharing. I hope you are doing well. I know those first few weeks can be difficult and a whole lot of adjusting. Give it a little time and things will settle down and you can start building up that muscle! I’m glad this blog has been a help to you along the way. Please feel free to reach out if you have any other questions.

      Reply
      1. Denisha

        Hey I have been trying to look up people that only have nerve damage to the spine. And legs is weak and give out on me,but most of time I am in a chair and be in alot of pain. Feeling is off in my legs but also damge was done to that what up above and bowel and bladder. So doctor said I have to have a ileostomy bag but I can’t fine and one with my condition, having this same thing I have. But the doctor saying I have to lose weight because it will benefit me. I am only 235 and my weight gose up and down. They told me avery thing to do. But when it got time to set up the surgery she said I need to lose weight.i am like why she didn’t tell me this before and I remember I did ask is their any thing the doctor want me to do? She stated no nothing at this time.

        Reply
      2. Sarah Bowler

        Hi I had loop ileostomy done in April this year and I had a bad time, I ended up back in hospital because I got a obstruction and was vomiting faeces. So had another operation. Since then my belly is always bloated like a balloon. It looks like I’m 6 months pregnant. I’m worried could u give me some advice please thank you

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    2. Gregg Harper

      Thanks for sharing. I’m trying to take weight off but nothing works. I can’t eat less than I do. Some days very swollen around the colostomy. No matter how little I eat that doesn’t change. Guess I just do the best I can. Best Wishes.

      Reply
      1. Nina Clark

        Please check into having a B.C.I.R. procedure. Had colon/rectum removed April 2015, I am a new person. I had colonic inertia since birth, now 68. This procedure has been around for 25 yrs, but Dr’s won’t take time to learn it. IT Will Give U Your Life back. No laxatives, no leaks, no running to bathroom 20 times a day. Contact me or look on Internet for info. Best of luck

        Reply
        1. Tyler Polsgrove

          BCIR here as well. I agree with everything Nina said. After 11 years of living with an ileostomy, I am free again! I’m not a supporter of western medicine but this surgery was life changing for me. Thank you Palms!!!

          Reply
    3. Nina Clark

      I never had to take laxatives with my bcir I don’t have any accidents or running to the bathroom 20 times today please please check out this website dr. Ernest rehnke at Palms of Pasadena Hospital in st. Petersburg Florida after 68 years of suffering with colonic inertia I am a free person have no activity limitations other than what arthritis and fibromyalgia in part on me as far as food I’ve always been allergic to citric acids which presented small problem as far as fruits and fruit juices but the only so-called restrictions on things like feelings with don’t digest and can clog your catheter and corn on the cob which is not small enough to pass through the catheter you just have to be reasonable try it works you will find out please please I urge you to check the bcir surgery out you will not be sorry if you are a candidate good luck

      Reply
  2. tj

    I always wondered if the calories absorbed was the same pre vs post surgery. I lost weight (on purpose) before getting ill, and now i wonder about calorie intake vs absorption.

    Reply
    1. Stephanie Hughes Post author

      TJ, I don’t know any specifics on this, but I can just tell that my body actually absorbs more now than it did previously. But in a good way, as in it’s getting the nutrients it needs and not just pushing everything through because of the inflammation.

      Reply
    2. Nina Clark

      Your body is absorbing calories better now since the colons removed the calories are absorbed through your better through the small intestine

      Reply
  3. Stacey

    Me too! Before surgery I was always talk and scrawny and gangly. I wasn’t upset with my body but I ways associated it with being sick. Now, post surgery, I’ve got some weight out on and I’m loving it. I’ve actually got boobs!

    Reply
  4. catchersrule

    Hi Stephanie. I ended up here by accident; it’s been a very trying day for me, and I was looking desperately online for some way to do yoga with the I guess end ileostomy I have (it’s where there’s no real stoma and the thing just drains out your side, but uses the same kind of bag I guess). You see, I started having intestinal issues last July and the ileostomy was put in about three months ago, in December. I unfortunately have had this terrible conundrum though, because before all of this, yoga was always my go-to excercise. I have had lupus since I was ten, and done yoga since I was sixteen, so before July I was in pretty good shape! And now… well I’m questioning my sanity some days. I’ve figured out little bits of Hatha Yoga, which was always my favorite kind anyway, but you know how this can screw with your thinking? We only just, after three months’ pain and mess, figured out how to sort-of get a good seal on the thing, but now I’m feeling very tentative about moving around too much, to keep the integrity of the bag. Obviously I know this isn’t right; I should be moving some at least, hell my doctor sent me home with two missives: 1)build up strength, and 2)gain weight.

    …Which brings me to my other comment here:) You’re the first person I’ve found on the internet who actively said they felt odd talking about the other end of weight issues. I hate that you have to feel that way! I do know why, though; it’s always been an issue with me as well, although for a slightly different reason. You know how everyone’s body works differently? Well, in my case, my bodily weight will drop like a rock as soon as I become ill. I was 129 before July, for instance, and by the last surgery I was maybe 90 pounds at best. So, in my case, it has always been good for me to weigh at least 120. My rheumatologist used to throw fits if my weight dropped below that and I was not sick, because he knows this as well! Like you were saying, don’t be surprised at stuff happening with your weight after such illness stuff.

    But, back to the exercise issue. As I’d said, yoga’s always been my go-to exercise before all this happened; unfortunately before last July I never had surgery in my life, and it would have to be right in my trunk, huh? I’m still kind of nervous about trying some things with it now, especially things like Half Lord of the Fishes, and unfortunately I still don’t have really stable and good pain control. But, reading other writings in your blog has given me hope. I’m a writer and an aspiring game designer, so I know how to rehab my brain, but I’ve really been struggling with rehabbing my body (unfortunately the OT who came today got the brunt of that frustration, and she took it completely the wrong way, as in, “well, of course you get used to people doing things for you.” Which is absolutely the opposite of me: I’ve injured myself I dunno how many times in hospitals trying to get up by myself when I’m not strong enough!).

    So, thank you for even just writing in this blog. If you want, look for me over here (my WordPress blog is where I talk about my writing/programming efforts) and/or on Livejournal, where I’m Hyperbard, and where I talk about illness/disability issues (mostly). Regardless, though, THANK YOU!

    Reply
    1. Nina

      Please check out the B.C.I.R. surgery website. The surgery will give you your life back..yoga to riding horses and everything in.between .I had this surgery April 2015, still have some minor recuperating, lifting, but feeling great. My energy levels are good. Having some weight gain issues even though keeping caloric intake between 1000-1100 a day. Dr states from Fluid. Body trying to figure out what to do with fluid the colon used to take care of. Good luck.

      Reply
      1. catchersrule

        I – REALLY – hope so, Nina. We’re closing in on 11 days or so till surgery on the 25th, and my husband and I are both just stressing more and more about it. I really want my life back, I want his life back, I want OUR life back! Even though this surgery is just intended to try and reattach the ileostomy site to the older colostomy, that’d be HUGELY better if it succeeds, because a much tinier bag to deal with, and therefore more movement, etc. I could (eventually) do my yoga again, take more walks, get around the fricking house without constantly dealing with a gigantic bag exploding and leaking everywhere. Just trying to hang on here, a few more days, then – well,we don’t know. Thank you for this though. Even a small message is helpful.

        Reply
        1. NINA

          I’m four months out, and doing really good. How did your suegery go? Did you have the BCIR surgery,? I had a lot of questions, but a lady, who is now my friend, had the surgery for the same condition I had ,and we share experiences. If you have questions please reply and I will help as much as I can. Best wishes on an improved life.

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        2. Nina Clark

          , I hope your surgery went well but I also hope you checked out the bcir surgery there is no bag everything’s internal you have no activity restrictions I do hope things went well but I hope you also checked out the bcir

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        3. Nina Clark

          Indian Rog the check out to bcir procedure had colon and rectum removed April 15th 2015 had to bcir which is an internal Reservoir patch created it’s created from your own small intestine nothing artificial to reject it’s all your own body organ I have no diet restrictions other than peelings things that normally wouldn’t digest in your system are too big to pass through your catheter no activity restrictions no leaks no bags to deal with your small intestine is a constantly producing organ that only produces liquid it’s just why this procedure works please check it out I think you would be a happy person and an active person and a person with a life

          Reply
          1. Tania

            Nine you mentioned you had some weight gain. Did you manage to get it off. I’m 1 yr post takedown with jpouch and gained 20 pounds. I’m looking into BCIR but don’t want to struggle with weight GAIN

          2. Nina Clark

            I’ve gained 10 lbs I cant seem to lose, but have to say it’s mostly because I’m not as active as I should be, due to arthritis pain. I vary about 8 additional lbs from fluid retention. I use diuretic prescribed pills a couple times a week. I had fluid retention issues before surgery, not everyone who has their colon removed has that problem . If you have gained 20 lbs since your colon removal I think you should be leveling out. I have discovered my system is absorbing nutrients better, and that carbs bloat me really bad. Proteins seem to agree with me better. For the 1st time since 2011, my iron level was great at my check up 6-7-2016. I was getting an iron or blood transfusion very 6-8 months before my surgery..Would I go thru BCIR surgery again? In a heartbeat! Wish had known about years ago…Please let me know how you are doing.

      2. Tyler Polsgrove

        Again, +1 on Nina’s comment. I had my BCIR in October of ’14 after 11 years of having an ileostomy. I managed ok with the bag, but I was constantly checking it and had several accidents due to an active lifestyle. It was only after BCIR that I felt freedom, realizing just how much the ostomy was dominating my life! I still wear my pants a little high out of habit, and my wife says I occasionally brush my hand across my abdomen as if I were checking something.
        BCIR is one of the greatest unknowns in modern medicine that I have come across. I’m 37 and I can literally do anything I want. Email me if you’d like a guy’s perspective or if you are just curious.

        Reply
    2. Penny Decker

      Hi,
      I had the majority of my colon removed just over 2 months ago and rectopexy at the same time without a bag. So, although I don’ t have a bag I am having a heck of a time trying to figure out diet and why I have liquid watery poo coming out and how do I correct for this without having to have someone run me 2 hours away to the hospital that did the surgery.
      I am also living in a region of California that is small townish in that that although it is civilized does not seem very resourceful medically and I was told no one locally can help me. that was deemed true from pointless excursions to the ER (before surgery) that did nothing but pump narcotics into people and then robs them blind and I was told live with it.
      At least I can see that what I have been experiencing is so totally much like what I am reading from you and your guests.
      I too am struggling with the rehab issues of my body and my mind. All of my friends still will recognize me as being so sick and I am actually getting better but they will always see me as the sick one. I cannot grow as a person from that position. I am not strong enough to be out socializing all the time but I am getting better and hoping I will find some new friends with my transformed body and working on transforming my self.
      So, although I am trying to figure out where do I go from here (figuratively) and for a good long while could not see my future beyond the surgery, I am actually beginning to feel better.
      I am struggling a little with dehydration and currently have a PIC line but that should be gone in about a week after another set of labs. I found a recipe for home made pedialyte which is easy and better than gatorade, it is great for kids and to have on hand.
      What I am so happy about is that my lab work and body chemistry is better than it has been in a couple of years. I was struggling with colon inertia. Some of that I still have which is what I suspect too with the watery poo when I know there is other in me but overall I am eating better and healthier and my friends are also telling me I look so much better. I can not see the changes myself because I look at myself everyday.
      So again, I am back to trying to figure out what to do with my life. I can cope with diet changes and am actually better than I was. I am walking a fair amount, I have a dog who likes to run and exercise so she helps me get better because I have to exercise for her. Why can’t I do it for myself or by myself, that I don’t know.
      so thank you for reading my rant if you have read it. I would love to hear from any of you about how you are coping, what challenges and successes you have. It will help me know I am not so lost and that there is still a life waiting for me.

      Reply
      1. patsygazaleh

        I have an Ileostomy for almost 2 years after struggling with Crohn’s Disease for 35 years. I have had approximately 18 surgeries in last 3 years. I started with most of my colon removed and had remaing colon attached to rectum. I struggled for a year, then had remaining colon removed and placement of Ileostomy. It’s very easy to get dehydrated. Smart water is the best thing I’ve found. I try to drink 2 liters a day. There are some places that have generic waters that are just as efficient, Walgreen’s, Kroger’s, Walmart. Sam’s warehouse has the least expensive and you can get it by the case. You can add things like crystal light to give you some variety. I use it occasionally, but I stay away from aspartame.

        I hope this helps.

        Patsy

        Reply
        1. Mary

          Nina, is this BCIR procedure done nationally? I am in the process of setting up ostomy surgery and this looks awesome. Would my doc know about this procedure? Thanks!!

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          1. Nina Clark

            IHI Ellie, where to start..I was diagnosed with colonic inertia after a lifetime of using laxatives,being told I had IBS, possibly Crohn’s, eat more fiber, drink more liquids,calling work to take 4 hr sick time because “I had a stomach virus”,( which really was me being sick, cramping and throwing up from the laxatives). Those were the good days, the bad ones were when the side effects lasted all day.I eventually developed allergic reactions to every laxative on the market that resulted in my being told I was out of options,, time for surgery.My worst nightmare was coming true, a colostomy bag. Being the stubborn person I can be, I started researching the internet to see what my life was about to become.I came upon the article about the BCIR.I firmly believe God put that article in front of me because He knew I could not wrap my head around having a bag.I called the number on the website, sent my medical records, called several people, whose numbers the office sent of people who had the surgery, decided I could live with that , was approved for the surgery.This surgery has been around since 1985, so it’s not “new”.I think drs won’t learn the BCIR procedure because in most cases, it “cures” the problem.This procedure is mostly done for people with crohn’s and ulcerative colitis. The hospital has a set program they follow.21 days in the hospital.. My surgery was on Wed .April 15, 2015, on Sat, the 18t, I had my last pain meds, other than the occasional tylenol.I have a high pain tolerance, but I actually wasn’t in pain, The dr makes sure you are not in pain, you don’t have t worry about that. The hospital stay is 21 days,was on tpn until you start eating, They have a set schedule they follow.When I came home I was very sore in the abdomen for about 2 weeks.I had to intubate on a schedule starting every two and working my way to intubating 3-4 times in a 24 hr period.I gained about 10 lbs from eating to stretch the pouch, I’ve gained about another from fluid retention.My r said that happens to some people because the body is trying to figure out what to do with the fluid the colon normally deals with. Working on trying to lose the weight.Recoup time i a total of 3 months, this includes the month in the hospital.My energy levels are good. I have had two iron infusions in the last year and 2 b12 shots. You lose microscopic amounts of blood when you intubate, so you need to keep it checked every 6 months. I am retired, so work wasn’t an issue for me.I maintain a home,yard and 3 dogs myself though. I imagine based on the type of work you do would determine when you would go back to work. I’m doing great, can’t believe how good I feel. No laxatives, leaks,odors, or running to the bathroom.Hope this answered your questions. If you have more, please contact me. Hoe things have gotten better for you. All colorectal surgeons should be trained in the BCIR procedure, to give their patients an informed choice.

          2. Nina Clark

            Most doctors don’t do the procedure I guess for the reason that it takes 6 months to learn it and in most cases correct the problem the only two places it do it right now is dr. Reinke at Palms of Pasadena Hospital in st. Petersburg Florida and a doctor killer in Los Angeles this procedure has been around since 1985 it is not anything that is based on the Koch pouch basically the Cadillac version nothing artificial is used to there’s no chance of your body reject in it please go online and check it out you will not be sorry

  5. yvonne

    Hi…my dad has a temporary ileostomy and the weight loss is frightening. His is high output and he has been in the er for dehydration because he couldn’t keep up with liquids. He is now on tincture of opium to help slow down the output but we both wonder if the weight loss will continue. He had his surgery a month ago an is 40 lbs lighter. We are scared.

    Reply
  6. Lauri

    Like you, Stephanie, I have always been a thin person, but at 5′ 6″, I like to weigh about 120-125. I have had an ileostomy due to ulcerative colitis, for 20+ years now. For a long time, living with the ileostomy, I was able to eat most anything. (no popcorn!) Over the past five years, due to stomach pain, I chose to go dairy free and gluten-free. That was difficult, as I really missed a great piece of crunchy bread and Brie cheese, but I felt so much better. Over the last year, I was experiencing the stomach pain and a flush stoma (many nightly “blow-outs,” and pouch changes) so I decided to go Grain-free, even harder. I am basically following the Specific Carbohydrate Diet, SCD, which has been around since the 1990’s. I feel better, but have lost 12 lbs, which is way too slight for my height and comfort level. So, I understand where you are coming from. It’s tough to put weight on when you aren’t eating carbs, bread or sugar! Just as I wouldn’t say to a heavy person, “are you o.k., you’re so heavy, is something going on?” the same should go for a thin person. I actually had an acquaintance ask me several times if I was anorexic. I do find, as an ileostomate in my 50’s, that more frequent meals and smaller amounts help with my digestion. Anyone have any suggestions for food on the SCD diet that will help me put weight back on?! I cook with coconut oil, eat avocados and make protein smoothies with a Paleo protein powder.

    Reply
    1. NINA

      Check out B.C.I.R. website.. Has th his surgery April 2015. This is as internal pouch. Food restrictions are mainly peelings on fruits and veggies. No outside appliance to worry with. A bandaid or small piece of gauze and tape over the flush stoma is all you need. It’s the size of a buttonhole.

      Reply
  7. melissa

    I had my ileostomy given to me in an emergency surgery two years ago and ive actually gained weight. I was so sick before I had it and lost alot of weight at the beginning but now I have meat on my bones and im happy for that.

    Reply
  8. Kim

    Thank you so much for this post. I am 5’9 and since my 30’s settled at 140lb but since my surgery in June I’m now 160-165lb. It’s been hard because I had to buy new clothes and I wasn’t doing anything different with what or how much I eat. My mom was very concerned at the rapid weight gain so I asked my GI and sure enough she thinks it due to absorption. Glad to know its not just me

    Reply
    1. Andrienne

      Okay finally someone who is having my reaction. I have a temporary diversion and can’t seem to lose any weight. My normal is about 150 and because of steroids before surgery I’m at 200! I have stopped eating like a crazy person and am exercising but no weight will leave my body. It’s depressing. I try to stay away from junk food but am asking myself why the torture when you’re getting bigger regardless?

      Reply
      1. Gregg Harper

        I’m on the side of gaining weight after my cholostomy. I had lost muscle because I was so sick. Now it wouldn’t matter if I ate nothing I gain weight. People tell me I look healthy. I interpret as getting fat. I look awful. I diet and get headaches…go to the gym can’t do excercised that help do to to restrictions. Just venting. Merry Christmas to all my friends….

        Reply
        1. WilliamKotewa

          I started on anxiety/depression meds 3 yrs ago. I started taking anxiety and depression meds same time. Jan 2015 they took everything from my rectum to several feet of my small intestines. My weight increased from 155 up to 210, that’s a pound a week. It never occurred to me my UC and Crohn’s could be the problem. And it’s all right around my belly 🙁

          Reply
      2. Crystal

        Hi Adrienne, I’m the same. Before my surgery, I was usually around 140-150, but now I’m at 194. My eating/exercise habits haven’t changed; I just gain 5 ish pounds every few months. I know you posted this awhile ago, but have you had any luck losing the weight?

        Reply
        1. Andrienne Dabney

          Nope. I spoke to my doctor about it and she seems to think it’s just me. She doesn’t think it has anything to do with the bag. I’m still trying however since posting, I gained another 20….I’ve started juicing this week and hopefully I will see some results with this. What has surprised me is the more weight I gain, the larger my stomach gets….I HAVE to get this weight off! Any suggestions are welcome.

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  9. Sandra Williams

    Ok. I guess I’m the odd one! I have a diversion ostomy and I’ve gained well over 55 pounds since my surgery last June!! For 13 years I could not eat dairy, beef or ANY produce except for potatoes!! Well let me tell ya… After that first scoop of ice cream….! I know when I have a reversal chances are good I’ll go back to restricted eating. So I’m really fat right now! I don’t care! Just pass me more ice cream!!

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  10. Christine Parry

    I am on TPN overnight every night for 12 hours and will be for the remainder of my life. For those that don’t know what TPN stands for it’s Total Parenteral Nutrition. I have been on TPN for 3 years so far, I have to link up to a 2 ltre bag of nutrition via a line which goes into my heart, at the same time being extremely careful that everything is done aseptically so as to avoid infection.

    I have had Crohns disease since the age of 14 which was diagnosed when I was 17. I had many small bowel resections over the years and had periods of severe illness throughout my life the worst episode of which began in January 2011 when i was admitted into my local hospital with severe abdominal pain apparently due to 3 strictures in my colon. Because of this, i was operated on to remove the strictures but came apart inside and nearly died because of all the infection. One thing led to another and nearly 4 years later and having had yet another 4 major operations to remove fistulas and being fitted with a Jejunostomy I look to most people that don’t know me, as though i have nothing wrong! I still suffer a lot of pain every day but i have learned to manage and live with it.

    I have put on 3 stone since being on the TPN. I mostly live on a diet of cornflakes and soya milk topped with squeezy honey as i know that it won’t upset me or give me too much pain. I really miss going out for a meal with friends or just the pleasure of eating a nice piece of sirloin steak, but all I have to do is think about the dreadful pain I would be in and probable hospital admission if I did, and that stops me!

    Reply
    1. Nina Clark

      Please check out the BCIR SURGERY SITE. It’s the best thing thats happened to me. Had colonic inertia entire life. This surgery is usually done for people with crohns or ulcerative colitis.

      Reply
  11. Gregg Harper

    I had a ruptured colon from diverticulitis 4/15. Emergency surgery 9in of colon removed. Got bag and scheduled to be reconnected again. I’m gaining belly fat like crazy. I weighed 180 for years. I’m now 210 3 months later. It’s like blubber all around my belly where my stoma is. I can’t stand to see myself. Everybody thinks I should be losing. Very depressing. My Dr. Said I must have increased caloric intake…I haven’t. I don’t want to be seen. It’s all just blubber. I also have horrible indigestion. I don’t see a future of looking anything like me again. Nobody understands how this happening with surgery I’ve had.
    I feel very depressed and miserable from the fat. I should be losing. Also legs and feet swell sometimes. I can’t even get shoes on. Am I alone?

    Reply
    1. Carilee

      Greg, I can understand where you’re coming from. I had a ruptured colon 7/4/14 and almost died. Was given a 10% chance of survival so first off….You and I are lucky to be alive and we are very strong! I was hospitalized for 3 months and for whatever reason (still unknown) have not been able to walk since. I had been in a hospital bed for 10 months and was placed on TPN (Nutrition Infusion sent through a pic line in my arm that goes to my heart and sends nutrition through my veins.) I gained 35 lbs on that nutrition because it was so full of calories. Since being taken off the TPN I have gained about 10 more lbs on my own because now I am able to eat but I don’t move much so I’m not burning the calories. I’m very concerned about my weight gain and am also very self conscious about it. I feel very unattractive what with the weight gain AND the ileostomy. I have been online this morning looking for weight loss programs. I’m thinking of trying Isogenix Ultra Lean Shakes for meal supplements but I don’t know how that will effect my ileostomy. I have left a message at my surgeons office for advise. I am happy to hear that you will be able to be reconnected. I have no chance of that. You are not alone and we just have to stay strong and determined. Good Luck to you.

      Reply
      1. Gregg Harper

        Thank you very much for reaching
        out. Everywhere I look it’s about people losing weight. While I gain. My activity has decreased a lot. I don’t think my caloric intake has increased but maybe.
        I have started eating quite a bit of yogurt.
        Which was recommended. I better pay attention. I think I’m retaining water. Some days my shoes don’t fit 2 days later too big. Dr’s did lots of blood work and say all is good? In turn I’m very depressed. As you say…we made it. Whatever IT IS? Thanks again very nice for you to reach out. I’ll put you in my thoughts.

        Reply
    2. NINA

      No you are not. My dr said after colon removal, your body is looking for ways to distribute the fluid the colon dealt wirh. A mild fluid pill helps on an as needed basis. I statred gaining weight, but realized my small intestines was absorbing more nutrients. Eat what I want, no peelings or nuts, but smaller portions. If you gave a woeking small intestine, please check out the BCIR website.

      Reply
    3. Andrienne

      Gregg you are not alone. I’m very uncomfortable with my appearance. I only look in the mirror when absolutely necessary. I’m in a lot of pain but find that doing water aerobics allows me to exercise without the hard impact. I don’t know if it will help with weight loss yet but I’m praying it will. I too, am happy to be alive but I’m resentful of the many changes I’ve had to accept. I want my normal back!

      Reply
    4. Andrienne Dabney

      Gregg, if you are still have belly fat issues try apple cider vinegar. Put about 2/3 teaspoons in some juice and drink it daily. I saw a significant reduction to my stomach mass after using this method for a month.

      Reply
    5. Linda

      Hi Gregg. Boy, can I understand where you’re coming from. I, too, had ruptured my colon from diverticulitis & chronic constipation. Strained too hard & pop! That was April 2015. 3 1/2 months after my colostomy I was able to have it reversed. Between both surgeries the dr. removed aprox. 14″ on colon. I have gained over 30 lbs. I wasn’t eating any differently but still gaining. (I was about 20 lbs. overweight before all this happened) I recently went back to the gym but so far haven’t lost a single pound. By belly has lumps & bumps it never had before. I agree with you, it’s looks like blubber & it makes you feel even worse. I’d like to be in the group that looses weight but apparently that is not to be. So, you are not alone & obviously neither am I. I’ll post again if I have any luck. Best of Luck to you, Gregg.

      Reply
    6. Patt

      I also had an ileostomy reversal, I am putting weight on everyday it seems and it’s all on my mid and stomach area, Cant fit in my clothes. I don’t have swelling , but my legs ache, and my feet feel like someone beat them with a bat. I am so miserable about this body change, I’m eating why less , and scale doesn’t go down. Have you had any luck finding an answer to this problem

      Reply
  12. Fanny

    This is perfect! My husband has an ostomy, and before he had the surgery, he got really sick (could not get out of bed, all liquid diet, very weak), and we discovered he had an abscess from one of his 3 fistulas. He was hospitalized around thanksgiving, then again 3 weeks later for his surgery. He got down to about 140 pre-surgery, then 120 post-surgery. He always weighed about 155# and is 5’11”. That was in 2013. Now he’s 175-180#! We joke that he got a little carried away with his recovery, but I can’t tell you how healthy he looks, even if he is carrying a tiny bit of extra weight for his frame. I told him from the beginning that the ostomy is what will save his life, and I think he knows that now, even though it is hard to be the one living with it. Honestly, he probably should have had his surgery years before, but better late than never! This is a great post and a great reminded that the extra weight is healthy!

    Reply
  13. Elizabeth

    Hi I have a ileostomy. I got it a mouth ago in August. I should be getting it off in November or December. I weighed 145 when I got it on. Now I weigh 118! I am 5″8 and 16 years old! I am very under weight. My doctor wants me to gain weight before the sugary plus I am under weight anyway. I have been trying to eat fatty foods but I just keep losing! I need some help! I can’t have lactose or any raw vegetables, acidic food and a lot of suger even natural suger! If anyone could help please do!!!

    Reply
  14. Robbi Reddell

    After 15 years of trying to keep my UC in check, it was found that I had a severely twisted colon, and at one point, was starting to close shut. After 3 surgeries, my proctocolectomy was complete. I’m 5’4″ and as of last November. I weighed 250# before surgery. My doctor wanted me to lose weight before the procedure. That didn’t happen. I gained an additional 15# since and I would really like to lose weight. I’ve thought about diet supplements, but with the reports coming out about the safety of them, I’m hesitant about doing so. I saw Dr Oz on TV today with the Garcinia-Cambogia. What concerns do you have about taking this route. Losing weight is so difficult. Due to my arthritic knees, most exercise activities are very painful. I tend to walk very slow. I also have arthritis in my hands. I’m 66 years old. Although my doctor said I am cured of this illness, and won’t need any meds, I stilI have one more hurdle to get over. I would like to have some type of weight loss program to follow. I’m single and would eventually get back in the dating scene, but it won’t happen until I can shed some pounds!! Any suggestions?

    Reply
    1. Nina Clark

      I gained weight on the Garcinia crap.. ur body is also absorbing calories better and holding fluid. Ask dr for fluid pills to help.

      Reply
    2. Nina Clark

      Easiest exercise is water aerobics if available
      I am 68 and had colon and rectum removed in April 2015, had BCIR done. Have gained 10 lbs since surgery, but that’s due to not exercising right now. And eating too late on the day. It’s cold here and I hate cold weather so won’t go to gym. Keeping caloric intake to 1000’1200 calories a day,eat what I want. Also, do not take meds in capsule form, they don’t dissolve only get gummy. My dr said if in doubt, put capsule in apple cider vinegar, should dissolve in 30 min or less, if not, open up and throw plastic capsule out.can u imagine all the plastic we ingest thru meds..no more for me. I love the bcir, no leaks, no activity restrictions, no laxatives, no bags to mess with..only food restrictions are peelngs,corn, and raw veggies. Cooked ok. Fiber not necessary as that’s only good to help thicken things in the colon, which we don’t have anymore.I wish everyone on this blog could experience the results I’ve had from the bcir. Hoping to get our medical school interested in having their surgeons learn the procedure. It’s only been around 30 years..

      Reply
  15. Teodore Kinisch

    I just had emergency colostomy due to a botched colonoscapy. He perferated my bowel in 2 places. My surgery was Nov 25 , now almost a month later i have lost just over 30 pounds. I need to try to gain weight back for the reversal. I get winded rather easily and have little to no appetite.

    Reply
  16. Kim

    Wow, I am in TEARS reading this…FINALLY I’ve found others that have GAINED WEIGHT after a colostomy! I had to have an emergency colostomy Oct. of last year and I’ve gained almost 70 lbs!!! I had to have an emergency colostomy due to a septic severely infected rectal prolapse. I don’t think it can be reversed due to loss of rectal muscles. I went to the dr. today and had gained 5 more pounds since last week, despite NOT changing my eating habits!! I can’t stand for others to see me now, I rarely go out (people actually make rude comments and I’ve even had people I know NOT talk to me after seeing me so big…they look at me in disgust and walk away…why do people have to be so judgmental?? ! am severely depressed. My dr. today mentioned that changes to my body due to the colostomy was probably responsible (but she’s testing my thyroid also, to see if that may be a culprit). I also have severe swelling in my feet and legs, that fluctuate, making it difficult to even wear shoes sometimes. I feel so horrible about myself right now…besides being self conscious about even having the colostomy, now I’m dealing with these definitely UNWANTED side effects!! My dr. today put me on a diuretic to help with fluid retention…If anyone with similar symptoms find any solutions, please share them…I’m at my wits end right now!!! (Thank you ALL for sharing your experiences…I wish everyone the best and will pray for you all!!)

    Reply
    1. Nina Clark

      Had a protocolectomy in April this year. I have gained 8 lbs. First, your body is trying to figure out what to do with the fluid normally contained in the colon, fluid pills help, 2nd, your body is absorbing nutrients/calories better, so u have to watch ur caloric intake closer.I had a BCIR done and am finally enjoying life. No bags, no activity restrictions. Hope this helped a little. I’m going to start going to work out with light weights after 1st of year. I will be 69 in March. Contact me any time. It will get better. Hugs

      Reply
    2. Nina Clark

      I was diagnosed with colonic inertia which meant that my colon hasn’t worked properly and finally quit working my entire life had bcir surgery done April 15th 2015 it has given me my life back this is an internal Reservoir I do not deal with any outward bags leakage or anything like that please check out the website to see if you would be a candidate for this amazing life giving surgery the only problems I’m experiencing right now is weight gain from fluid retention which is in a lot of people a common side-effect after your colon is removed because your body doesn’t know what to do with all of the fluid the colon used to accumulate I’m working on that situation now and using some fluid pills I lost 5 pounds one night by taking fluid pills so that might give you an idea of how much weight you can gain from fluid. This surgery is done at Palms of Pasadena Hospital in st. Petersburg Florida by dr. Ernest rehnke contact them and they will send you all the information you need and will determine if you are a candidate for this surgery once it’s done you are basically fixed if you have any questions message me thank you

      Reply
  17. Robert Louthan

    My weight has been all over they the place since I was diagnosed with Crohn’s. My average before was always 190-200lbs. Since then I’ve gotten down 165 at my worst. Since my temporary ileostomy I gain most of my normal weight back till I got a peristomal hernia and I jumped up to 240. It would take about a day for whatever I ate to reach my bag, when before it would be 2-4hrs. But a few months ago they decided it was best to relocate and make my ileostomy permanent, I’m back down to about 200, but 15lbs of the weight lose was from what they had removed. Hopefully in the next few months I can be more active and settle on weight, but I am happy to fit back into my clothes that I couldn’t wear the last year.

    Reply
  18. Ellie

    Hi, I had an ilomostomy exactly 4 weeks ago today, I’m still trying to adjust to living with my stoma, and for that matter still recovering, how long did it take you to recover? How long were you in hospital after your op?
    So far I’ve lost 11kg, which is 24.5 pounds and it’s still going down by the day, I had gained a lot while on steroids for a whole year (before my surgery) so I’m not worrying just yet, I’m actually happy to see the scales go down dramatically though I’m worried that 3-5 more kg will put me underweight.
    There are a few factors why I’ve lost so much weight 1. Come off steroids 2. My output is just as much as I’m eating 3. Come off TPN 3000calories (intravenous liquid food) while in hospital for 3 weeks. So going from a 3000 calories “diet” to not eating for a week to eating but not holding anything is surely going to make you lose weight.
    How long does it take for your body to adjust after surgery?
    I’m still changing by the day after 4 weeks.
    How long after surgery did you feel capable to return back to work?
    I cannot even walk 5 minutes without having a lye down for 10min, I get exhausted and out of breath from doing the littlest of tasks.
    How long did you stay on pain relief?
    Sorry for all the questions. Would love to know your story…
    EB

    Reply
    1. Andrienne Dabney

      Ellie, it took several months for my stoma swelling to reach what was I guess it’s natural size.

      I had surgery 2 years ago and I haven’t returned to work yet. Because of my disease, UC, I developed sores so I have an additional issue there. However, I have little to no energy still. I have to make myself do things. Push through it.

      I took myself off of pain medication after about 6 months. I still need them, but feared becoming addicted.

      Once you are comfortable with the stoma, try water aerobics or build up your stamina by walking around you neighborhood a few times a day.

      Reply
  19. Angela Dial

    Yes as you ive always been small 5’2 exactly but kinda boyish as far as hips not the girls …;), but after of course i was very skinny sickly looking NOW 5 year’s later i have hips and a waist so Dr said body will change a dieased colon was removed, so i wear about same size before surgery now but my body is different, …….good topic love this site

    Reply
  20. Aimee Weathersby

    I had a stroke in my bowels in March 2015 ( ishemic Bowel) I lost everything but 4 feet of my small intestines. I was sick for 8 months. LITERALLY throwing up 24/7. I lost 80 pounds. Just in the last 2 weeks my pain MEDS are not absorbing. They are coming out in my bag COMPLETEY WHOLE. IM VERY CONCERNED AND DONT KNOW WHAT IS GOING ON. I HAVE ONLY LIQUID OUTPUT ALWAYS. DO U KNOW WHY THIS COULD BE HAPPENING? Is it dangerous? What is the cause of this and do I need to have another surgery ?? IM VERY SCARED. I NEED ADVICE. IM A NEWBIE AND IM ONLY 38 years old. What happened to me is very rare. They say this happens to elderly people and still can’t tell me why it happened? Any info would be greatly appreciated. I have a 9 year old daughter. My prognosis and life expectancy is ALLREADY not good. Ii was in the hospital 87 times last year. I’m very worried. PLEASE HELP

    Reply
    1. Stephanie Hughes Post author

      Hi Aimee, I wish I had some advice for you as to why this suddenly started, but I think your best option would be to reach out to your surgeon or WOC nurse. I do not have a lot of knowledge on your history in order to be of much help. Perhaps they can give you a different way of taking the meds or grinding them up or something similar. I hope you’re able to find some answers!

      Reply
    2. Kate

      I had the same problem when I was 25 Aimee, everything you describe was part of my story. If you had a high ileostomy then water will come out, eventually that will change. Hang in there, things get better. Im married now, adopted our 3 beautiful children. And now, Im 50!!

      Reply
  21. Tucy

    I had a resection on 11-20-2014, the old fashion cutostomy. Since then I have gas, bloating and accessive weight gain. I was told I could eat whatever but I believe that isn’t true. I have no pain but I’m very depressed and my bowel movement is not so good.

    Reply
  22. Tina

    Hi i had my colon removed 6 months ago and i have gained 2 stone i am so depressed by this…what can i do to lose this weight

    Reply
    1. Stephanie Hughes Post author

      Tina, I think a lot of us know where you’re coming from. The best advice I can give you is to try to eat as healthy as you possibly can. I know vegetables are not always the easiest to digest, but making sure you’re getting those nutrients will help. It’s easy to fall into a habit of eating foods that aren’t great for you but are easy to digest.

      Reply
      1. Michael

        Hi Everyone,
        I feel weird writing this, because I didn’t think I would ever have too! I’ve been battling with chronic constipation and an unbalanced pelvic floor for quite some time. I’ve tried all the medications and even had therapy and nothing has worked. As of last week my surgeon finally decided it would be best to remove the colon. I have been reading on both procedures so I could educate myself on what would happen. Due to my pelvic floor being unbalanced there’s a chance that once the colon is removed I would still be unable to go to the restroom like I should, so I asked about receiving the bag. I know my situation isn’t as severe as most, but if it’s a chance at a better life I’m all for it. I just want to say thank you all for sharing your stories it puts me at ease!

        Reply
  23. Sean Sullivan

    Thank you for sharing this; I don’t generally do much perusing of colectomy-related information online, but I’m having the opposite problem to you it seems and am trying to seek help. Although I’m not too underweight, if at all (I’m a 5’10” man and fluctuate between around 140 and 150lbs, sometimes going to 155 or so.), I’m definitely not comfortable with my weight, and even though I could live joyfully just the way I am as a sacrifice, weighing less than I would like to seems to be linked to chronic problems I’m experiencing such as fatigue and other things.
    I had my total proctocolectomy in 2015, and it’s been a full year this month since my take down. Again, life is good and no legit complaints I guess, as I don’t have to live with a bag after the takedown, but after a year, I guess my body’s still adjusting. The weight in my face and my neck seems to have nearly disappeared, and I have a hard time having a positive expression sometimes and seem tense as a result. This reiterates throughout my whole body, and to me this skinniness is equivalent to real pain that gets in the way of my functioning normally with getting work done, keeping relationships going, being able to rest, etc. I seem to change shape often and rapidly depending on what issues I may be going through at any given time as digestive discomfort goes (still working out a lot of the bugs). For example, if I am having burning and acidic bowel movements, that discomfort seems to trigger a tenseness and “stringiness” anywhere from my hip area to my feet and legs, to my chest and neck, face, shoulders and their extremities, that seem to take me from feeling pretty normal to feeling like I’m twisted and mangled, can’t get a good breath and only feel like sleeping. This even happens when I’m not having as gnarly bowel movements though, so I am unsure how to assess the situation. Many specialists have failed in helping me, so right now I feel I’m on my own.
    Before my most recent extreme flare up with Ulcerative Colitis and the resulting surgery, I fluctuated a lot, but generally could keep on anywhere from 160-170lbs if I focused on it. But the proportion of the weight was more comfortable generally and I’m unsure how to get that back if it’s possible at all. The main issue now is a more limited diet (I’m still trying to figure out which foods to stay away from and which are good to consume), and a fear of too frequent bowel movements and urinating if I eat or drink too much. Thus I can’t do as easily the 6-meal-a-day high calorie, high protein, high carb meal plan necessarily, unless I go through a long period of aggrevating the problem in order to potentially make it better (with no guarantees).
    If anyone out there has had a similar experience, I would love to hear from you. Is weight gain even more hard for you had gainers since the removal of your colon? Do you experience the same type of pain I do in relation to abnormal bowel and urinary function?
    Thank you again in advance, and I appreciate your postings.
    Aloha,
    Sean
    Honolulu, HIm

    Reply
    1. Nina Clark

      please check out the BCIR procedure…to me it’s, the best option of all the procedures out there.internal pouch, no bowel accidents, no odors.. I Intubate 3 times in 24 hr period, wear a small band aid patch with a small gauze square over the stoma, which is the size of a buttonhole. If you have questions, please feel free to ask. My “side effects” have been a 10 lb weight gain, have to admit I havent been very faithful about exercising, and some pulling from scar tissue . Both I can live with…Best of luck

      Reply
  24. Tracy

    The weight gain has been awful for me. I feel so much better now that I have my ileostomy but I can’t figure out why I can’t lose any weight. I am so frustrated!

    Reply
  25. digby09

    60 year old male crohns for ever! wine drinker (red 🙂 ) 2000 cal a day + wine 2 mile walk every day exercise every day …. ileostomy May 2016 225 lbs before operation now 260! gutted … everything is working well no problems just a weight gain I drink lots of water 2 ltrs + I dont use sugar or eat sweet things normally fired food a little but mostly Thai and Asian style and rice I keep to 2000 calories a day weight has stopped gaining but not dropping off typical day 2 poached eggs on toast tea no sugar or milk or coffee but not often … walk with dogs every day lunch perhaps a ham sandwich or omelette with mushrooms or something simple Dinner last night was a steak rib eye 6 oz new potatoes and baby sweetcorn mushrooms Night before Thai red chicken curry in egg fried rice and vegis I cook everything … my one vice is red wine Perhaps a bottle per day. Dinner out perhaps one a fortnight … Seldom do I drink beer, sweets or chocolate, and fresh fruits as a pudding whats going wrong The weight has gone onto my upper body ! all 20 + lbs of it …. I want to be 200lbs without starving or causing myself problems … My Fitness pall says I should b loosing weight … 🙁 im not !

    Reply
    1. Linda

      Hi. I’m now a little over 1 yr. post colostomy take down. The whole weight gaining issue was driving me crazy, literally. Now, it seems like my body is ready to accept losing some of the weight I gained post op. I have been drinking 1 teaspoon of apple cider vinegar with a little orange juice & diluted with water about 3 times a day. In the last month I have lost 13 pounds. I still have over 20 lbs. to get to my pre op weight but it’s a good start. I walk at least 1 mile a day, sometimes more. I’m sure if I get more active the weight loss will speed up. I’m not starving myself at all. I just think my body has figured out what it needs to do with about 18 inches of missing colon. I do still have a lot of swelling in my lower legs & ankles and my feet feel like someone beat them up. Don’t give up hope, things will get better.

      Reply

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