Moms with Ulcerative Colitis and or Has Had a Total Colectomy

Updated on June 03, 2015
D.C. asks from Sabillasville, MD
6 answers

So, a couple of years ago I got diagnosed with UC. The last couple of years have been...well HARD. I have been on Humira for the last year and a half and just had my 3rd colonoscopy and was told that either way my doctor ( who is amazing and I have been blessed with) wants me to go ahead and have a total colectomy and ileoanal anastomosis with J-pouch formation. <--- had to get my notes for that mouth full LOL. And before discussing all of the details with him in the next couple of weeks when I get the results of all of the 60 biopsies that he took...I wanted to see if I could get any personal experiences from y'all! Plus, I'd like to hear some non doctor talk about it too. And this was the first place I wanted to try for some friendly advice/personal experiences blah blah :) Thanks in advanced for taking your time to read this :)

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So What Happened?

Thank you for your comments so far. I have been avoiding all of the bad foods as much as I possibly can and it has helped. Only thing is they think they had seen displaysia last year right before we got surprised with a pregnancy. And colon cancer runs in the family. I think that is the MAIN reason he wants to go ahead and do the surgery. If it hadn't been for that then I think he would've tried just doubling up on the humira which has it's lovely side effects as well. So, I'm trying to be super positive about it all. Y'all are actually helping with my anxiety about it all so THANK YOU ALL!

More Answers

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E.B.

answers from Austin on

No advice or insight on the colectomy, but we have family members with UC and Crohn's, and my daughter has a form of gastroparesis with complete pelvic floor muscle malfunction.

We've researched the impact of foods and eating habits, and I wonder if in addition to your gastroenterologist, you have consulted a nutritionist? We have learned that carageenan, guar gums, xanthan gums, and artificial sweeteners (anything ending in -itol, processed stevia and agave nectars, Splenda, Equal, etc) can be extremely harmful and/or irritating to some people with digestive disorders. Carageenan seems to be in everything these days, and it's amazing how many products have guar and xanthan gums in them. We avoid all those processed foods. (And yes, the Stevia and agave nectars that are commercially available on the grocery store shelves are not natural; the pure stevia plant itself is natural, but the common brand name varieties of the extract are highly processed.) By eliminating all those foods from the diets of the people in our family affected by digestive disorders, we have been able to get some relief.

Also, my daughter is instructed by her doctor to eat a low-residue diet. That means removing all peels from fruits and vegetables, cooking fruits and vegetables well, avoiding seeds and nuts, avoiding high fiber foods, etc, and that has helped a lot. There are lots of resources for low-residue diets online.

I'm not sure if this applies to you, but if it helps, then, that's good.

3 moms found this helpful

K.C.

answers from Washington DC on

I have had Crohn's since I was 14. Had my first ileostomy at 23, I think .... At that point, they removed all but a foot of my large intestine. Humira wasn't an option then. 5 years ago, I had the remaining large intestine and everything "south" of it removed. I have had an ostomy for more of my life than not at this point and I know it saved my life 25 years ago. I agree with the poster below ... Do it now while you're feeling good. Recovery will be so much easier. I have no experience with a J-pouch, but my husband's 70+ yo aunt does and she doesn't let it slow her down.

BTW ... If you haven't, check out the info available on the Crohn's and Colitis Foundation's website .... Www.ccfa.org

3 moms found this helpful
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P.K.

answers from New York on

Do it. You will get your life back and wonder why you did not do it sooner. The choice is to be sick or well. I have an ileostomy. So does a friend. Another just had an ileo-anal anastomoses. We are all very happy and healthy. Age range from 22 yo 64. Hospital stay of about a week. If you do it when you are feeling good the recoup will be easier. I strongly encourage you to do it.

3 moms found this helpful

D.B.

answers from Boston on

Have you worked on an anti-inflammatory diet? Some people do what Elena recommends, which is food avoidance. Others work with adding in foods that have positive effects. There is an anti-inflammatory superfood as well (plant based peptide) that strengthens the immune system as well. A friend of mine was at the point where you are with UC, except she really didn't want her colon removed at her young age (30s). She didn't want to be miserable anymore either after 3 resections and still plenty of explosive diarrhea and pain. She switched everything around and blew her doctor away after 3 months. If you're determined to go through with it, that's one thing, but if you think there are no options, that may not be true at all.

1 mom found this helpful
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R.K.

answers from Boston on

Please accept my empathy for the decision you have to make. Whatever decision you make, you know that getting all the information you can before you decide is key. So I would suggest that you be sure to get a second opinion from another specialist. And thought you didn't ask, I offer that UC management is often like a three-legged stool, with each leg being equally important. The legs are (1)food-choices and timing, (2)sleep and rest, and (3) stress (good and bad). So eating appropriate foods and portions at comfortable time intervals, being careful to get a full night's sleep every night, and minimizing stress through choices, mediation/prayer and/or exercise are all very helpful.

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