Remicade and help closing the wound after fistulectomy

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exit 4
Regular Member

Date Joined Apr 2009
Total Posts : 148
   Posted 2/13/2010 2:33 AM (GMT -7)   
Remicade and help closing the wound after fistulectomy - Any advice will be greatly appreciated -
Hello all!
Here is my story; it’s a little long, but I hope it explains my situation to everyone and hopefully someone will benefit:
Sorry for long rambling - I am very angry, upset and depressed - it’s all started July 20/09.
I am 46, male, very active until 6 month’s ego. I was diagnosed with UC about 15 years ego and have been always told that UC is what I have – every year colonoscopy showed only lower left colon inflamed. My symptoms were pretty mild and typical of UC – occasional dria and some mucus, left abdominal pain. Asacol and rectal rowasa with occasional prednisone – never longer then few weeks on prednisone -kept me ok pretty much all these years. I could eat most anything and drink occasionally. Few years ego, I started having hip pain – usually on right side, sometime on the left side. Initially pain lasted few days and would go away on its own. Then pain started to last’s longer and longer – mind you my GI symptoms were very mild, maybe 3 BM per day. Sounds more like Crohns? X ray and CT scans did not show any bone/ muscle issues, after research I found out that joint pain is common with both UC and CD. Then 2 years ego I developed anal abscess that was drained and I totally forget about it. Then last year, I developed fistula in the place of that abscess. No pain at all, just occasional discharge. My gastro recommended going back to rectal surgeon to see about this fistula. Of curse the surgeon jumped on it and told me he can fix it with plug – minimal surgery -I am out of the hospital the same day. That’s when my nightmare begins!
Plug got infected on the inside of my rectum and swelled to about a fist size in 4 days. Went to ER, plug was removed and I was put on intravenous antibiotics. After 4 days on it I developed c diff – antibiotic killed all good bacteria in my colon, was put on flagyl and vanco – both helped with c diff but made me sooo sick, I had to be on morphine drop for 10 days from belly pain. Liquid diet - Lost 40 lbs! After 10 days draining seton was put in and I was release from hospital. Took about 6 weeks to drain all rectal infection. Did not go to work as the pain was very bothersome to sit – I have a desk job. My surgeon suggested just taking Seton out and seeing what happens. After the Seton was out, I was able to sit a little more and went back to work part time. In about a week, I still felt sore and painful and called my surgeon for follow up. he said if I am concerned, to go see other surgeon from his practice in ER and just to make sure it’s not infected and don’t wait till next appointment. This other surgeon started yelling at me - fistula will NEVER close! What I am waiting for, flap may not work as my fistula is to low! Let’s do the surgery now. . I have UC not CD, I will be in pain for a week, take meds and you will be ok after that. He pretty much pushed and pushed me to do it right then and there. And stupid me, I went for it! That was on October 10th 09. The first night after fistuletcomy, I was back in the hospital with massive rectal bleeding, belly pain and diaria. Spent 5 days in the hospital on flagyl, venco and prednisone. Released from hospital and kept on taking prednisone and venco for a month. Belly pain went away, but the wound from fistulatomy surgery on October 10th never closed!!! I am on short term disability that going to run out, I am afraid for my job, I CAN’T sit longer then 20 min, going BW is vary painful and on top of that I developed kidney stones for loosing 40 lbs and swelling in the rectum pushing on my prostate that make me drip urine! And I developed fissure in the wound! But the biggest scare is that 5 month’s past by and wound is not closing. I went to see 2 other rectal surgeons – they found no infection or complications, just not healing wound. Now they all are saying I have Chrohns and that’s why my wound does not close. They recommend try Remicade next. If Remicade will not work, I may need a temp bag to heal my rectum/anus. I am scared –isn’t remicade used to heal internal colon lining and is very dangerous? My colon symptoms are no longer mild –after all that meds and c diff, but it’s the wound in the rectum/anus that needs to heal. My question is will remicade help close the wound?
Male, 45; UC 15 years, Lexapro helped with stress and UC.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 2/13/2010 4:49 AM (GMT -7)   
exit 4~sorry to hear you are having such a time of it...yes, fistulas usually mean a Crohn's dx:( I've had fistulas for more than 10 years living with more than 3 setons at one time, it's no fun!

I would definitely worry that the wound is not healing. Remicade worked wonders for me (short time tho...antibodies) and did close my fistulas so I could have the setons removed. When it failed, I had to have them replaced. I say that because the fact that your doc said to take it out and 'see what happens' shows what he doesn't know.

If it is possible, a consult with a C/R Surgeon at a teaching hospital may be the way to go...they can usually help cases that other docs give up on because of their lack of experience. I would suggest if you cannot get to one that you at least find a different c/r practice in your area!

As far as working~can you go to work and just stand up or walk around for a little when your bottom bothers you? I also had a sit down job and found many creative ways to sit and would stand when I had to to 'stretch'.

I hope you are able to find relief soon!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 2/13/2010 8:48 AM (GMT -7)   
Hey exit4 and welcome the the Crohns Healingwell site. Yeah, once you get fistulas you can pretty much be assured you have Crohns not UC. I think Ohio gave some good advice, maybe try to transferring to a colorectal surgeon in a teaching hospital. Doesn't seem your docs are really communicating with eachother. Remicade is supposed to be really good a healing fistulas. I hope it does the trick for you and you get feeling better soon. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

exit 4
Regular Member

Date Joined Apr 2009
Total Posts : 148
   Posted 2/22/2010 11:49 AM (GMT -7)   
thanks all for the reply - i am very stressed that I am sure does not help things, I went to see another CR and he performed colonascopy, wound is very deep but not infected, he also diagnosed ulcerative proctitis... not sure what to do next...
Male, 45; UC 15 years, Lexapro helped with stress and UC.

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