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Still flaring badly. Questions about surgery...

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Ulcerative Colitis
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pine88
New Member
Joined : Jul 2017
Posts : 18
Posted 11/29/2019 11:05 AM (GMT -8)
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?
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 11/29/2019 11:50 AM (GMT -8)
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.
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The_Swan
Regular Member
Joined : Jan 2019
Posts : 139
Posted 11/29/2019 12:43 PM (GMT -8)
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.
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 11/29/2019 1:35 PM (GMT -8)
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
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1784
Posted 11/29/2019 5:19 PM (GMT -8)
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
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16404
Posted 11/29/2019 6:19 PM (GMT -8)
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.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 12/2/2019 7:10 AM (GMT -8)
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!
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Casey_LB
Regular Member
Joined : Mar 2015
Posts : 310
Posted 12/2/2019 10:23 PM (GMT -8)
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.
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colitisresearch
Regular Member
Joined : Mar 2018
Posts : 79
Posted 12/6/2019 10:27 PM (GMT -8)
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.
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3837
Posted 12/8/2019 10:41 AM (GMT -8)

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.
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Hambo88
Regular Member
Joined : Feb 2018
Posts : 257
Posted 12/8/2019 10:54 AM (GMT -8)
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
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 12/8/2019 11:02 AM (GMT -8)
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?
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 452
Posted 12/8/2019 6:16 PM (GMT -8)
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
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3837
Posted 12/9/2019 5:51 PM (GMT -8)

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


I'll have it on the 16th
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Bull101
Veteran Member
Joined : Feb 2015
Posts : 655
Posted 12/10/2019 4:51 AM (GMT -8)
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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