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Ulcerative Proctitus

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Posted 12/31/2010 12:10 AM (GMT 0)
I have suffered from ulcerative proctitus for the past 15 years.  At first my disease would go into remission but for the past 5 years it has been active. I have tried all the drugs and Humera or Remicade are not an option for me.  I am currently taking Apriso (4 tabs daily) Imuran (4 tabs daily) and using Rowasa enemas every other night.  The drugs are keeping my symptoms in a semi tolerable state. I do have bloody stool daily, stomach cramps and lots of gas.  On occasion I have had diarrea attacks which have caused great humiliation and am always nervous to venture too far from a bathroom.  It has caused physical limitations for me (going on hikes, walks, etc).  I have talked to my gastro doctor who has said he can refer me to a surgeon and either have a colostomy or j pouch ileostomy.  I am sick of my life now and he has indicated this would cure my disease. I am terrified I will be going from one bad option to another.  Anyone who's been through this have any words of encouragement or have this problem who are glad they made this choice.  I am leaning toward a colostomy because I am tired of the diarrea. 
Posted 12/31/2010 8:17 AM (GMT 0)
Hi.

I'm currently recovering from an end ileostomy operation, after 37 years I parted company with my colon on the 17th November. After 8 years of constant issues with ulcerative colitis and ulcerative proctitus I'd had enough. One severe flare up 12 months ago and 12 months of trying various medication to control things all which failed, it was decided I either had the operation whilst I was well or I had the operation as an emergency within the next year.

I registered here basically after seeing your post and to say, theres nothing to worry about. The operation was a cinch. They removed the complete colon and left a 6" stump for reconnection in the future.

I still have slight issues with the proctitus but pentasa suppositories deal with that without any problems. In hindsight I should of had everything removed and be done with it, but I wanted the option of reconnection late on.

To be honest, I wish I'd had the surgery sooner. This has completely transformed my life. My first trip out after leaving hospital consisted of visiting one shop in Truro and stopping for lunch in a great pub on the way home, not once was I looking for the toilet signs or worrying, there is no running about in the mornings and getting up at 5am just to be in the bathroom for 2 hours.

Go for it, It's the best thing I've done.

I hope this helps and good luck with it all.
Posted 12/31/2010 7:42 PM (GMT 0)
its a hard decision, and this is how i made it.
I KNEW i hated my life, i KNEW i was miserable, i KNEW i was wasting away.
And yep, i could have surgery and I might hate it, and i might be miserable and i might still be wasting my life, but all the people i talked to were happy, and all wished they had done it sooner. So since i knew i was miserable i decided to take a chance and im glad i did!
Posted 12/31/2010 10:53 PM (GMT 0)
     I understand where you are coming from.  I was diagnosed with ulcerative proctitis in 98 at the age of 52.  After running the gamut of meds, prednisone(of course), Colazal (ten years), 6MP (seven years), rectal meds, Remicade (failed after 3rd infusion) and Humira (three months and no change), I decided to have surgery.  My GI doctor did not refer me to a colorectal surgeon.  Even after all those meds, he wanted to send me back over to Philly for a second consultation with a "world reknown" GI specialist. tongue    All that guy did was pat himself on the back and brag about all the articles he wrote for medical journals.  So I took matters into my own hands and searched the net for a good colorectal surgeon in Philly.  We live in south Jersey and I did NOT want to have the surgery over here.  Too many horror stories.

     I had my total colectomy with end ileostomy on June 28th by Dr. Robert Fry at Pennsylvania Hospital.  He is head of colorectal surgery at the Univ of Pa.  He said I made the right decision, as my rectum was badly diseased.  The last two years I was prednisone dependent.  It gave me osteoporosis, elevated my blood pressure so I had to take three different blood pressure meds and raised my blood glucose level so high that I had to take a pill to regulate my blood sugar.  He told me at my first office appointment with him that he would not do a j-pouch on me because 1. my age and 2. extended use of prednisone.  He said it would be too stressful on my system.  I told him I had no problem wearing a "bag".  With that settled, I made the appointment to proceed with surgery.  It wasn't easy, so I won't sugar coat it for you.  I had a couple of blips, but thankfully, they happened while I was still in the hospital.  I believe it took me awhile to heal because of my prednisone use.  However, I feel sooooooo much better now!  He left my anus intact which I found most people have the anus sewn closed.  His theory is there are more complications when it is sewn closed.  I just let him be the judge.

     I only take one blood pressure pill a day, 25 mgm of Toprol, and not sure I even need that!  No other pills at all except for vitamins.  Such a relief after taking 17 - 25 pills daily for the past twelve years.  UGH!

     Good luck to you!  The permanent ileo is no problem at all.

Posted 12/31/2010 11:45 PM (GMT 0)
I had to make the decision for surgery fairly quickly. I had moderate UC for several years before having a severe flare-up in September that would not respond to big doses of Prednisone. I was in the hospital for two weeks and the docs said I should try Remicade, which I would have to be on for the rest of my life, and if that didn't work, get emergency surgery. It is funny, but even then I was more drawn to the surgery. I just didn't like the side-effects or risks listed for Remicade. Still, I didn't want to go into a rushed emergency surgery in such poor shape either. I tried the Remicade and it ended my flare but gave me the most debilitating joint pain. For me it became a matter of quality of life. The hobbies/activities I love immensely are rock climbing, backpacking, drawing and working as a park naturalist where I lead hikes and teach people about nature. I knew I couldn't do those things with the Remicade-induced joint pain. I could hardly walk or open a jar my joints hurt so bad. It became even more clear that surgery is what I wanted. I also felt that the permanent ileostomy was the best option for my lifestyle. I had the surgery on November 8th. I will admit that the surgery recovery has been a bit hard. Though my stoma function has been fine so far and I haven't had any trouble with leaking appliances etc., I have had some issues with my incision opening up and taking forever to heal do to being on Prednisone at the time of surgery (30 mg). I still have pain at 8 weeks due to the slow healing too, but I know that it is getting better every day. I am very glad I had the surgery. Though the surgery hurts, my colon used to be really painful and bloated all the time because of UC. That feeling is completely gone. I am also off all meds except for ibuprofen and a post-surgery pain medication. My husband and I just went on a little road trip and stayed at a condo for a few days. This was my first time emptying my pouch on the road at rest stops and changing my pouch somewhere other than at home. It was no problem and really helped my confidence. I am returning to work on Tuesday. I know I will have no trouble doing everything I did before. My plumbing is just a little different now:)
Posted 1/3/2011 6:18 PM (GMT 0)
Thank you all for your replies.  You have confirmed what my gut feeling is.  I am unfortunately going to have to postpone surgery for awhile (need to build my sick leave/vacation time up a bit).  I do know that I am well sick of my current situation.  You are a great group of people and have really helped me.  THANKS!  So how long was the hospital time and recovery from work?  I have a "sit down" job.

Posted 1/3/2011 6:50 PM (GMT 0)
I also had severe proctitis and opted for jpouch surgery after 12 years of the disease. It's been 10 years now since my surgery and it's still the best health decision I have every made. I no longer take medication, have urgency, or need to know where all the bathrooms in town are. You can have a better quality of life post surgery.

Sue
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