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Ulcerative Colitis
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Posted 11/16/2010 8:32 PM (GMT 0)
Hi everyone -

For those of you who recall my postings, I had ileorectal anastomosis surgery on 7/13 after 2 years of suffering with no relief except from predinosone (mesalamine had no effect and I opted to skip the Imuran and Remicade).

My surgery (removal of colon and connecting small intestines to the rectum) was successful, but I suffered from a nasty wound infection for several weeks following the surgery.

I'm now all healed up.  I'm still having about 5-8 BMs a day (sometimes just 3-4 a day) at the four-month mark after my surgery.  The BMs vary - sometimes I have diahrrea, other times, solid stool, and sometimes I have a lot of urgency, but a lot depends on what I eat.  I'm finding that I usually have to go now right after I eat.

The upside? I no longer have any blood or any abdominal pains - no more fatique, and all my energy is back.  The frequency and urgency is somewhat annoying, but I expect the frequency will improve over time (the nurse told me that it can take up to 12 months for someone to fully heal from colon surgery and for their body to acclamate to the changes).

Also, I had only mild rectal inflammation which is why I chose the surgery I did.  The rectum that remains may also account for the urgency, frequency, and some of the diahrrea I have since I still have some inflammation there.

Overall though, I'm happy with my decision and think I will only improve over time - I've already noticed substantial improvement and I've traveled by air twice now with no problems.  Of course, I will monitor and have regular check-ups to ensure nothing changes.

I looked into the pouch but the risk of pouchitis and the high failure rate deterred me from that option.  I'm fine with having just a little inflammation rather than a lot.

Of course, if the inflammation in my rectum does get worse, I can treat it with convention UC meds and also wait to see if something more promising - a new cure or completely new treatment - comes along.

I'm optimistic that a cure, or a treatment just short of a cure will happen in my lifetime and that I can experience the benefits with the remainder of colon I have left.  I'm in a position now where I can wait unlike before, where I had UC throughout my colon and it was debilitating.

Let me know if any of you have questions.

CollegeGrad85

25 years old - pre-law student

dx with UC 11/2008

On Lialda, Apriso, Colazal, Prednisone

dramatic flucations - days with 1-3 bms and some days with up to 20

ileorectal anastamosis surgery on 7/13, wound infection in the resulting weeks.

60-70 percent better now - and on the lookout for further approvement on the road to "normalcy."

 

Posted 11/16/2010 9:38 PM (GMT 0)
The other thing - I still notice mucus in my stools from time to time, but I attribute that to the remaining inflammation I do have and the recovery of my intestines from surgery. Does that sound about right?
Posted 11/17/2010 2:56 AM (GMT 0)
Congrats on a new life and continued recovery! I was just curious though about your comments re. pouch surgery- you mentioned high frequency of pouchitis and a high failure rate. My understanding is that pouchitis, while suffered by up to half of jpouchers at some point in their lives, is generally very infrequent and easily treated, sort of like getting the flu (chronic pouchitis does exist but it is very rare), and that the official success rate for jpouches at the major centers (eg Mayo, Cleveland Clinic etc) is listed as well in excess of 90%... that said fear of those outcomes keeps me fighting to try everything myself. Anyway, just curious about those remarks- but very happy things are working out for you and here's hoping that it just keeps getting better and better. And many thanks for taking the time to update us still ailing colon'd folks of life on the other side.
Posted 11/17/2010 4:25 AM (GMT 0)
Thank you for sharing your story. Good luck with the rest of your recovery.
Posted 11/17/2010 10:08 AM (GMT 0)
Thanks for the update Collegegrad. I see you refused immunomodulators and went for surgery. How do you feel about that decision now that you're on the other side? I've spoken to a surgeon about IRA in daughter's case (she has UC) and he said his patients with it do quite well with fewer bms and more continence in the long run (he is an adult CR surgeon so he's talking about adults, IRA is usually done on children I think). My question is how do they know if your rectum is in a good enough state for an IRA? Did you have a mucosectomy? I thought with UC the rectum was always the worst effected but I'm confused about this? I'd love to hear what your surgeon told you about this?
Posted 11/19/2010 2:50 PM (GMT 0)
Probiotic - I've heard the 90 percent number, but I've also heard from some GIs that the failure rate can be as high as 25-30 percent, so I'm not sure what to believe. As you said, it's still not the norm, but the fear is there.

killcolitis - I have heard that IRA is better for control over the long-term. One surgeon I spoke with said age is a factor - those who are younger (18-35) tend to have better long-term results, and eventually only have 2-3 BMs a day - and that's my goal. It's really a judgement call - I had one surgeon look at my rectum and said that my inflammation was relatively mild - he'd seen patients with rectums that were 4-5 times worse. The rectum is not always affected the worst, but UC always starts in the rectum and spreads upward.

There's also a psychological component - knowing that I still have part of my colon makes me feel good and a little more "normal." I'm also optimistic that as more treatments and a possible cure becomes available - stem cell therapy seems promising - that I can use this to my benefit and treat the remaining colon (rectum) that still has some inflammation. I'm in a position where I'm 75 percent better now and can afford to wait, unlike before.

I definitely recommend IRA over j-pouch, personally. Like I said, you really have to just watch the remainder of the colon left (risk of cancer, but you'd have that anyway if you didn't have surgery) and you have better control over the long term.

I'm taking a low dose of immodium daily to help with control, but I'll start tapering off early next year.

I still have urgency at times and stool frequency, but I am noticing improvement and as nurses have told me, I just need to be patient. It's a very slow process, but it's great not to have any more bleeding or fatigue and to have all my energy back.
Posted 11/19/2010 3:09 PM (GMT 0)
I'm happy you're doing well and are getting back at a regular life. It's very freeing to be liberated from UC!

However, I would like to point out an error in your message. You state that the failure rate of a jpouch is high; that's not true.
Most pouch failures have to do with the patient being later diagnosed with Crohn's or those that had surgery with a less experienced CR surgeon. Jpouch surgery is very complex; one of the most difficult surgeries. It takes a surgeon with a lot of experience to do this surgery well. We are lucky that in the US we have hundreds of highly qualified and experienced CR surgeons. Also, chronic pouchitis exists in about 1-3% of jpouchers. Many treat it and keep their jpouch. Others decide to have their pouch removed because of it. It's apparent that many of those with chronic pouchitis are rediagnosed with Crohn's.

There is no perfect surgery for UC. Each choice, including yours, comes with advantages and disadvantages. But in the past 10 years I have not met one surgery patient who has regretted their choice post surgery. For the majority of us the problems we face post surgery pale in comparison to how we lived with UC.

Sue
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