Posted 11/29/2019 11:05 AM (GMT -8)
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?