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Posted 11/30/2016 11:14 AM (GMT 0)
Hi,

I had an emergency subtotal colectomy with end ileostomy 5 months ago after a severe life threatening flare of UC (Had not been diagnosed with UC prior to that)

I was in hospital for 3 weeks prior to my op, on IV steroids and Infliximab (Remicade) however these had no effect on the UC.

Anyway, 5 months after the op and I don't feel like I'm recovering as I should.

Firstly, they left about 20cm of rectum and colon in, and after frequent (4/6 times a day) bouts of bloody mucus discharge I was sent for a CT scan which showed that is severely inflamed. I'm currently taking pred suppositories and waiting for Tacrolimus suppositories to be compounded by the hospital pharmacy to treat this inflammation.

Also, while I was in hospital, I lost around 15kg and I haven't put any weight back on in the 4 months since I left, despite not having any problems with my stoma and eating well.

I've also been suffering from joint pains, fevers and in the last month or so my hair has started falling out. My GI docs have stated all this could be caused by the UC in the rectal stump but I was told by my surgeon that as its only small, and not in use that the rectal stump couldn't do this much 'damage'.

In addition to that I just feel awful and exhausted all the time.

I was just wondering if anyone had similar experiences after this type of surgery, and if there was any specific cause that my docs haven't looked into.

thanks for reading,

Peter
Posted 11/30/2016 12:07 PM (GMT 0)
Did anyone mention j-pouches to you? Do you have any intention of getting one or will you be sticking with your stoma?

You are right to be concerned. If your stoma is going to be permanent, you really should have your rectum and anus removed and your butt sewn up. If this is the first step of j-pouch surgery, then the second step will remove the rectum.

In my case, I had a subtotal colectomy and about a foot of my rectum/sigmoid left in. I wasn't eligible for a j-pouch because I had Crohn's disease. But two years after the first operation, my surgeon reconnected my small bowel to whatever was left of my colon (not a lot). The tediously predictable happened, and the Crohn's came back in the rectum. There was always a chance of that happening of course, but I was hoping to get a few years of Crohn's-free life first.

Anyway, I can tell your surgeon that only a "little" bit of IBD can do that much damage.
Posted 11/30/2016 12:58 PM (GMT 0)
NCOT is right. If the disease came back in the part that is left no matter how small it can make you feel like crap. All your symptoms sound like an active flare. Some people the rectum is where the disease attacks the worst.
Posted 11/30/2016 1:38 PM (GMT 0)
They've been quite vague about what my options are for the next step.

My surgeon just said no more surgery for one year to give my body time to heal from the first one, but hasn't said what further surgery options are open to me.

The GI docs have said if I'm thinking about being 'reconnected' in the future I need to keep my remaining rectum as healthy as possible, and if they can't get the inflammation under control that I will need surgery need to take it out.

Ideally I would like to get reconnected at some point in the future but I think a straight ileo-colon reconnection like the one you've had wouldn't work for me as the inflammation in my remaining large bowel/rectum is too bad, so I think the J Pouch would be the best option for me. But not sure if I'm an eligible candidate or whatever.

Do/did either of you get any extra-intestinal problems with your IBD? I'm hoping this course of Tacrolimus will sort all of them out.
Posted 11/30/2016 4:05 PM (GMT 0)
Sounds very similar to me. I had my colon removed almost two years ago & then just over a year ago I started flaring in my rectum (my surgeon left this because of my age & gender & because I had previous pelvic surgery to remove one of ovaries, he didn't want to root around my pelvis again in case it caused fertility problems in the future, and also leaving me the option for a reconnection). When I started flaring in my rectum, I had frequenct, urgent toilet visits, with bleeding & straining. I had joint pain, serious fatigue, pain, cramps, & generally just feeling crap. I felt bery like I did when I'd my whole colon flaring, except the pain & cramps were localised to my pelvis.
I was put on prednisolone suppositories in January & they have helped. I take two a day. Last time i saw my GI in July, he suggested trying to wean off them. I tried then & again last month, taking one every other day instead, and noticed the difference in less than a week, symptoms were coming back. So I'm sticking with the two a day. Are the pred suppositories helping you at all?
I don't want to be reconnected with J-pouch or otherwise, so I'm facing more surgery to remove my rectum. I'm throwing around in my head doing it sooner rather than later, I'm just finding it difficult to choose to go into surgery. The last one was emergency so the choice was out of my hands!
Posted 12/1/2016 3:42 PM (GMT 0)
The Pred suppositories are definitely working. I'm taking one a day and they've really helped the joint aches and fatigue, and I'm passing less bloody mucus, but it's still happening - with all the urgency and cramping and straining - 2 or 3 times a day.

I'm hoping the Tacrolimus ones will clear it up completely and I can start getting back to normal.

Have you had any side effects from being on the Pred for so long? I'm not sure if they give you side effects when taken as a suppository.

I'm not sure at this stage if I'm eligible to be reconnected but if not it will be a tough decision to decide when to have another op to remove the rectum. Like you say sooner rather than later sounds logical but if your last surgery was anything like mine you wouldn't choose to go through it again unless absolutely necessary, so I understand your dilemma!
Posted 12/1/2016 4:01 PM (GMT 0)
I wonder if you could ask if you could take two suppositories a day? Mine are 1 mg pred twice a day. That may help your symptoms more. As I said, when I tried taking one every other day, my symptoms started returning. Something to ask your GI maybe? I still do have some symptoms with this dosage, but it's manageable.

I haven't had any side effects - this was the first question I asked my GI! I was on oral pred before & they were awful! He said that there isn't the same side effects of long term use of the suppositories because they work locally. He said it's like using a cream.
Posted 12/1/2016 5:46 PM (GMT 0)
Deleted, 'cos I somehow missed an entire post.

Deffo do not go for a straight ileum-sigmoid connection. With UC as severe as yours, it will be a disaster. Provided there is no suspicion of Crohn's, you should be eligible for a j-pouch however.

Post Edited (NiceCupOfTea) : 12/1/2016 10:50:04 AM (GMT-7)

Posted 12/1/2016 11:52 PM (GMT 0)
You've already gotten a lot of good advice. I have to say, I can't understand the surgeon leaving all that rectum and not telling you future surgeries would be necessary. I know too many people who had 3 step surgery and suffered intensely with proctitis between steps 1 & 2, because of the same situation you're dealing with. I personally don't think long-term treatment at this point makes sense. I'd want to figure out surgery to get things headed in the right direction ASAP, but that's just me. To have surgery and still have active disease and have an ileostomy pouch is not ideal. It's a double whammy. You need to consult with someone who can help you figure out next steps. Of course treatment until you figure out what to do, is better than nothing.
Posted 12/10/2016 4:37 PM (GMT 0)
It sounds like you have your rectum? I had my colon and rectum removed and there is only a bit left in there, the anus, and, what they refer to as the rectal cuff. My operation was in 2010, my anus became diseased in 2014. My disease was always in my rectum, never did it travel into my colon, but they took it anyway. I have had biopsies every year since the disease returned. No dysplasia, no cancer. My symptoms are mild, but instead of mucus coming out the anus, it comes out my vagina. They are certain there is a fistula in there but cannot find it and believe me, I have had a myriad of tests to try to find it. My surgeon said since I do not defecate through the rectum, there is no reason to fiddle around and try to repair the fistula, so I just wear a panty liner. I am having success with Proctofoam.
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