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Posted 11/29/2019 7:05 PM (GMT 0)
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Post Edited (pine88) : 6/27/2023 11:28:56 PM (GMT-8)

Posted 11/29/2019 7:50 PM (GMT 0)
Do you not want to try Entyvio or Xeljanz? Has your doctor tested your Remicade levels and antibodies?

Normally, the entire colon is removed for UC surgery.
Posted 11/29/2019 8:43 PM (GMT 0)
Pentasa supp and Asacol supp didn’t help me, but steroids supp and Canasa did.
Same for enemas, Mesalamine enemas help me always, give them a try. While taking your current med.
Posted 11/29/2019 9:35 PM (GMT 0)
Usually the recommendation is for the whole colon. Mostly the colon absorbs water. Maybe some vitamins in the right colon, but most nutrients are taken up in the small intestine.

I have heard of temporary bag and reattachment - but usually not for UC.

I would give remicade a little more time, and then try some other biologics before schedueling surgery. Maybe talk to a surgeon to get info about permanent ostomy vs jpouch vs other options.

good luck
Posted 11/30/2019 1:19 AM (GMT 0)
Discuss with few surgeons now. I did before I made final decision to have surgery. It put my mind at ease once I made choice. I had great surgeon and best choice I ever made. No more anxiety EVER. Life is good again. No struggles
Posted 11/30/2019 2:19 AM (GMT 0)
Ditto there's still xeljanz, stelara, and entyvio, so you're not out of options. Out of patience, perhaps. Not everyone tries everything.

Why not just get a no obligation colorectal surgery consultation. A question and answer session with a surgeon. Ask what concerns you and get answers from the pros. More of a learning experience, just in case you need it someday.

Resection surgeries are only for our Crohn's disease friends (removing the bad area and reattaching the adjacent good areas). UC you get a colectomy, removal of whole large intestine, full stop, no exceptions. Why? Resections attempted for UC over the decades ALWAYS result in UC reappearing in the large intestinal areas left behind. Not recommended for that reason.

Bowel rests (giving the bowel a rest and then reattaching) generally do not produce lasting results. UC just returns with renewed vigor after reattaching.

Large intestine only absorbs water, and holds stool; NO nutrients absorbed within large intestine.

A colorectal surgeon would assess Sphincter muscle strength and your case history. Few have issue with that.
Posted Today 3:10 PM (GMT 0)
You should go on a consult. That is the best way to know whether you would be a good candidate for a j-pouch. If you have weak muscle function, it is definitely risky, but you never know, and a consultation is the only way to find out. You can go on a consult, or a few, and not have surgery. It's not a contract, just a chance to get some information. Another option is a ileostomy. I know it sounds awful, but many people live very full lives with one. We have members here who had ileostomy surgery and went on to never post again. They are healthy and happy. Ileostomy surgery is quicker and more straightforward than j-pouch surgery. Often it's just one step. As the others said, you do have medical options. It's up to you whether you want to explore them, or if you've decided you've had enough. I had surgery and it's no walk in the park, but I am thankful to be done with UC. It's nice to live life without that on my back. I am free of drugs and doctors but I go to the bathroom more, which I don't enjoy. It's always something with this illness!
Posted 12/3/2019 6:23 AM (GMT 0)
Pine88,
I had very active UC for several years, not helped much by oral mesalamine, mesalamine suppositories, mesalamine enemas, imuran, prednisone, Remicade, or Humira (or various diets, herbal remedies, acupuncture,
hypobaric oxygen therapy, et cetera). Hydrocortisone enemas helped somewhat. At one point I lost 35 pounds in 4 months, was underweight for the first time in my life.

Entyvio and hydrocortisone enemas together restored my general health, over about 12 months. I still have some lingering symptoms of mild UC, but nothing close to considering surgery.

The point is, just because nothing has worked yet doesn't mean nothing will work. Entyvio or xeljanz might do it.
Posted 12/7/2019 6:27 AM (GMT 0)
Not sure if this answers your question.. but i always had problems holding suppositories and enemas in. I’m talking seconds not minutes. But, I’ve never had an issue with my pouch and the muscles in that area. After years of running to the bathroom and having accidents- I can hold it in again and use the bathroom when it’s convenient.
Posted 12/8/2019 6:41 PM (GMT 0)

DBwithUC said...

I have heard of temporary bag and reattachment - but usually not for UC.


I don't understand this. I had a bag and I got reattached?? I have UC. Unless you mean colostomy as opposed to ileostomy. I'm surprised a lot of people (including nurses) get this terminology wrong. Not saying you did, it's just an observation I have and I was wondering if others observed this as well.

My obligatory "surgery is not a cure" here. I had mine done and I have extraintestinal manifestation. I'm back on meds. I'm bitter and depressed. Nobody told me this could happen. I was told that this would be THE cure. Sadly it wasn't the case for me.
Posted 12/8/2019 6:54 PM (GMT 0)
yes you could read lot of very good responses .
entivio, xeljanz, fecal transplant, sandimun.
i receive sandimun and entivio. and it is complettly good but i am good enough and i would like avoid any surgery
Posted 12/8/2019 7:02 PM (GMT 0)
I knew surgery wasn't a cure. It only cures the issues you have with your colon. Mine was significant, so I do quite a bit better since surgery, but it's not a pancea. You do trade one set of issues for another, mine are smaller now since I am free of the drugs and doctors, but many people have issues after. I had a friend who was diagnosed with Crohn's after.

Andrina, did you ahve your scope on Fri?
Posted 12/9/2019 2:16 AM (GMT 0)
Just wanted to correct something. The large intestine does not just absorb water. It houses most of the gut flora which are responsible for so many functions that we don't know them all yet, such as neurotransmitter production. Also, ileostomy often reduces the ability of the small bowel to absorb nutrients like iron and B12, so it's not like the small intestine has perfect absorption after an ileostomy.

I support the choice for surgery but it's good to be comprehensive when people really want to understand what they might be dealing with.

Flaring for years and years sounds terrible. I hope you find relief soon, no matter what you end up choosing sad
Posted 12/10/2019 1:51 AM (GMT 0)

notsosicklygirl said...
.Andrina, did you ahve your scope on Fri?


I'll have it on the 16th
Posted 12/10/2019 12:51 PM (GMT 0)
I think the reattachment was in reference to the procedure that some people have surgery for a bag but don't get their colon removed, just to be put on bowel rest. Once the bowel has a chance to heal, they reconnect the colon. Not sure this is ever done for UC but I've seen stories of it being done for non-UCers.
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