Moms with Ulcerative Colitis and or Has Had a Total Colectomy

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.

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

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.

Maybe you'd get more help on this site?

https://www.inspire.com/groups/agmd-gi-motility/discussio...

Best to you.

:)

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.

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.