I am 2.5 months from takedown and have lost 50 lbs (245 down to 195) since my UC got so bad it required surgery. I am not gaining weight back (actually have lost about 10 lbs since takedown). Has anyone else experienced this? Should I gain weight back?
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My son lost 120 lbs! But he had a lot of problems and eventually went back on his colostomy. Since mid-may, he has gained 50 pounds. May too much to fast. If you eat enough junk food, you'll gain weight. Jeff was not supposed to gain all this weight, but it was first time in a year he was able to eat so he over did it,
I look like death walking.
I have had the Pouch just short of two years and it's time for it to go before it kills me.
I am not going to deal with it anymore. It's not worth the time and effort and certainly not worth my life.
I will deal with the bag and not have to have a raw butt and everything else. I am over the Pouch.
It's just not worth the trouble.
I am in the 20 percent of who it just does not work.
I am sure others have read my post is the Osteomy forum. Not happy about it but am pushing 60 and need to get this fixed now.
Yes... You should be gaining weight.
I should be too. But something is wrong... With me anyways and the surgeon and I have come to that 20 percent conclusion.
You need to see someone and get an idea why you are losing and not gaining. That is important.
My pouch is healthy. I may have chron's but not willing to take the pill test as it may cause a blockage and will require surgery anyways.
The weight you are losing is extreme. I have gone through the same thing and it needs to be taken seriously.
I have hoped for good news too jeffsmom. But you can only suffer so much before you realize the bag... Appliance... I like that word better.... Is the answer.
I have gone like I said almost two years dealing with this and that's enough. It works or it doesn't. Two years is enough time to tell that.
I have been through so many bad days in the two year period that while going through the bad days thinking how much easier it would be for it to be going into a bag. No pain. No cramping. None of that BB. Terrible.
Like I said also. I'm not happy about it. I don't want to wear an appliance. Or go through surgery again. I went through a lot of pain to get my pouch. But I have tried it all to no avail. If I continue on the way I am going I won't be around to see my 65th birthday. With an Osteomy I am sure I will.
I wish you all luck in the future.
It's hard to put on the weight. I know.
You may find a simple answer to your weight loss problem. Protein will put it on. It didn't work for me. But it does for some.
With an appliance I have confidence that I will put my weight back on and be much healthier than I am now.
Long read... I apologize.
But I am going where I was trying to avoid.
But I have to accept it and move on and posting... And talking about it helps.
Thank you for listening and reading.
I reread my post. Wow. I was gonna delete it but am gonna let it fly. Lotta anger. But I am angry that I have to give mine up. It's what I've been dealt and I have to live with it. If I can go through this I know I can get used to an appliance. May take while but it will happen.
Sorry to hijack your post. You need to see someone bout the weight loss. Period.
I hope everything works out well for you, Richard.
I just got to rambling.... I only hope you get yours figured out. It's hard on the body and mind if it goes on a long time.
Thank you. I appreciate it.
It's normal to lose some weight after takedown. The weight will come back. It took me about 6 months to start gaining it back.
The topic of weight loss caught my eye as I too am struggling in this area. I have just passed the one year mark since my first surgery and I am still struggling for my body to adjust to this. For those of us in this group it is a disappointment to have gone through such a major surgery, 2 really and in my case I have the exact same symptoms as I did before my colon was removed!! I know my UC had reached the point where I had no other option, no medication had worked and I now had some cancer cells that had shown up on a colonoscopy. But I had been slowly losing weight while suffering with the UC, and then lost about 10 pounds while in the hospital during the colectomy. Gained a little then had the takedown and that was rough with nothing going as planned and had to have a PICC put in and was fed with TPN for about 9 weeks. That certainly helped me gained weight but at the same time my GI system was not doing well adjusting to having food go through it so when the PICC came out it has now been a slow steady decline in my weight again. Have lost all I have gained with the PICC. Yes it helped but clearly was a bandaid and did not fix the problem. I am a small women, only 5'2", but I now weigh only 82 pounds and have no energy at all and look like a chemo patient. I literally don't want anyone to see me, which is not a problem since my constant diarrhea or pain and cramping keeps me close to home. My surgeon has tried many different meds and now I am seeing a GI he referred me to. So far just had blood work, stool sample, upper GI scope and some new meds. See him again on Tuesday. I take Flagyl even though the pouchoscopy showed no bacteria; both docs said no pouchitis. But when I went off of it my diarrhea became more severe and more watery. With the Flagyl I have fewer movements, and it is thicker and a bit more controllable. This still is no life. At what point do you and/or your doctors say this has been a failure and your body is just not going to adjust to this? Will drs keep pushing different meds and trying different things and never really say that and you have to finally firmly make that decision? I know for a surgeon it is hard to consider something they did as a failure but I don't think he did anything wrong. My body is just now accepting this for some reason. Maybe it is too soon to call it quits but my husband and I are very concerned about my weight and nutrition. This new GI dr mentioned the possibility of a PICC line to my husband when I was in recovery after my upper scope if I couldn't put some weight on. I suppose we will discuss that next week as nothing has changed with the different meds he put me on. My life has been on hold for so long and I was so hopeful a year ago when I went through this surgery and I thought by now I would have a new normal and be pain free and gaining weight. If only... I am curious what kind of conversation you had with your doctor about going back to the colostomy bag? Thanks for listening.