Still flaring badly. Questions about surgery...

Hi all!

First - I'm going to talk to my doctor, but I want to hear experiences from people with the same disease.

I've been posting from time to time, asking some advice in my miserable situation:-p I've been flaring for years, and nothing is helping. My tried and failed meds: First Pentasa supps, Pentasa enemas, oral Pentasa and Asacol, Entocort enema, then I had to start prednisone, then humira and then remicade. I've had 5 infusions, and maybe I'm a little bit better then before, I don't know, I was so miserable. But still I am flaring badly, and I struggle a lot. My last calprotectin (few days ago) was 1000'something.
It seems that the inflammation is still seated in the last 15 cm/6 inches or so.
My stool can be described as solid, but I have to pass small, narrow amounts often, and here's my huge problem, the second I feel it coming, I have to be seated on the toilet! Or else it just comes out. My dignity just doesn't exist anymore, and I don't want to live like this. I'm bleeding a whole lot too, and lots of mucus and rectal water. So those are my biggest problems, incontinence of some sort because of damage, and the amount of blood loss.
I really hoped remicade would work, and then the damages would heal, and then maybe I would start functioning normally again, holding poop like everyone else.
But now I really don't see any other option than SURGERY, and it makes me almost afraid to just think about... I have no idea what I'm going to. I just want to function like I used to... Here are my questions:

When the inflammation is located in the rectum and lower part of the colon, is colostomy good enough? So the non-attacked part of the colon can still be of use, absorbing nutrients and digesting.

Can this be done to let the inflamed part of the colon rest, and heal? Just thinking about reducing the stress, fear and worries I constantly battle with, would make things better... I'm anxious to just have a conversation with someone, afraid I suddenly have to run. Any experiences with this? Just giving the colon a break and then reattaching?

I've read that for a j-pouch to function properly, you need to have well functioning muscles around the anus. I said that I'm struggling because of damage from the disease, but I know from last birth that the outer muscles got weaker. It was easy to notice, as I was taking Pentasa suppositories then (when they were working), and I noticed after birth how I felt less resistence when inserting it. But still I could hold it in, I guess because of the inner muscles were still good. But this worsened along with the worsening of my UC symptoms. Anyone know anything about this? Do the ''holding in'' with a j-pouch completely rely on the outer muscles, as the j-pouch itself doesn't have any?

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.

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

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!

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.

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

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

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.