Ostomies, abcesses and fistulas

I have an illiostomy, I have had 26 rectal abcesses, 1 abdominal abcess, fistulas that don't heal for literally years. I've had 5 major surgeries, 2 being emergency, 1 for 3 massive porforations, Ive had 25 outpaitient surgeries for these rectal abcesses, and 2 outpatient 'surgeries' for kidney stones.

I have had my ostomy for or 5 years now...Ive still developed 3 abcesses and a few fistulas SINCE having no rectum even, and while having my rectum but not hooked up. Now I have a 'tunnel' as I like to call it, I think my surgeon called it a sinus track but I may be wrong. Had a test that they shot dye in the tunnel with the smallest tubing they could find in radiology which was from a port, the smallest ones available. They showed that it wasnt connected to any portion of my bowel. Surgeon which was employed at Mayo Clinic prior to coming here to Southeastern Virginia(Va Beach, Norfolk, Williamsburg, Yorktown, Jamestown area) is a colon and rectal suregon. He says that 50% of people with ostomies end up having to have it re-placed on the opposite side of the original placement, and I havent had htat done yet in 5 years. He said if he fixes this tunnel now that he'll have to take the flesh from the left side of my stomach, which would back him into a corner when my ostomy has to be put there.

Ive just enrolled in college once again. I'm 24, starting late because every enrollment I enroll and flare, and finally I put school off for 2 years, and not Im ready to try again. Well do I wear pads everyday and deal with the day in and day out and night drainage. Im still running fevers.
My main deal with is I can now feel gas almost like a fart passing through this tunnel exiting...So does that mean it could be connected to a portion of bowel now right? or I know it could also mean Im just sorta sucking the air up and releasing it when i move a certain way. Do I continue to start school and put off the surgery and try and deal with this or do i put off school again, a semester, in which case Id go back at the late age of 25 or do i start school and then down the road once i'm into my degree take off and do surgery? Any advice or opinions people? Especially the people who've ahd an abcess or fistula after an ostomy? I hadnt had to wear pads for about a year and a half or two years, and prior to that I had to wear them about 4 years...originally because my fistulas were draining stool actually which is just incredible to ahve to put up with...Im just lost...

Also Im usually the odd one that looks forward to surgeries because I usually get about 8 months relief and feeling very close to normal. But as with my rectum removal there are risks for men especially with the nerves in that area affecting male genetalia(spelling lol) and it didnt bother me the first time because of the rectum but am I pushing it going for another surgery like that?

Thanks guys, for those of you that dont know me, My names Chris, I live in South Eastern Virginia. Crohns for 7 or 8 years, dont respond to much medication, until now after all my insides have been removed.

Hi Chris

I don't know what to say. But earlier I used to feel that I had the worst of complications arising from my disease and post op. but after reading your post, I feel, what i have is not even 0.00001 per cent of what you are going through. OMG. God bless you.

So far as farting/passing gas is concerned, I do have that problem. Actually, in the fistulogram, MRI, CT and pouchogram, they figured out that my fistula/sinus track was communicating with my J pouch and that is how it was passing wind. I do pass stool from that fistula too. It becomes painful when it gets clogged with stool or wind, leading it to become a big abscesses. I can't sit on any hard surface, can't even drive or travel for long.

Well anyway. Don't worry. You have a fighting spirit and this disease cannot hold you in bed. You will be able to study and pursue all your dreams. Take care. Have sitz bath.

So far as changing ostomy is concerned, it seems to be quite common. I have heard lots of people do change the side after a couple of years. So not to worry. Cheer up. It will pass.

Hello Chris,

I don't have an ostomy, but I do have a fistula that cuts through the sphincter. It can be quite annoying because I have no control over gas at all. But when it happens, I thank God that at least I know the fistula is open -- I've had 3 abscessed off of that fistula when it clogged.

I suggest you call your college and talk to them about if there is a way to literally listen in to a class if you have to stay home. If the college class rooms are modern, they may have a phone line for a conference call. All you really need to attend a class is a phone to hear the professor. He/she can email you the slide presentations and handouts ahead of time (you may need to purchase Power Point if you don't already have it).

I hope it works out for you!

Wow, that's a lot to have gone through for a 24 year old! I had a fistula in my incision and it wouldn't go away, or it would heal and make a new tunnel. For months they did tests and through it and was told it was not connected until one day I did pass gas and some bowel material through it. So I guess I have little faith in their dumb barium and contrast procedures, and when they finally went in for surgery they found 3 fistulas and removed them all. I have been fistula free as far as I can tell, as you can never tell when you have an internal fistula and the tests don't work. I would definitly check for odor next time you pass gass through your hole, it still could be connected even if there is no odor. Good luck!

I go to Virginia Commonwealth Universities Medical Center in my states capital Richmond, Virginia on a regular basis so I'll obviously bring it up.

What about Remicade to try and heal this up? Ive never actually used remicade for that, but I've used Remicade. Has anyone used Remicade for Fistaulas?

What medications have you used before? Have you used remicade before? The reason why I ask is if you have had remicade then stopped and then started again your chances of having an allergic reaction increases. Have you tried Humira or Cimza? These are in the same class as Remicade and these have shown to promote mucosal healing. If TNFs have not worked for you then perhaps moving on to the anti antigens such as Tysabri or the clinical trials for vedolizumab.

Hello Sarah!

Welcome to the forum! It sounds like you are having a really rough time! I am glad you don't have Crohn's Disease (CD) because your likilhood of healing completely is so much better. The glue and plug procedures have a higher rate of success in non-CD. My doctor said these procedures can be done repeatedly until they work, but when they fail you could get an abscess. I suggest you talk to your doctor about another procedure called the advancement flap procedure.

Clearly I am not a doctor, and don't know your situation. But I do know these things can often be difficult to treat. We have had a lot of great conversations about these, and Ivy6 has put them together in one spot. Look at her post above and click on the link in her signature. I think this link does a good job explaning things, although it does get technical. Be sure to click on all the pages.

http://emedicine.medscape.com/article/190234-overview

Please know that you are not alone in this! These problems do take quite a while to get under control, so patience is required. You may also consider getting a second opinion with a colo-rectal surgeon specialist because it never hurts to talk with another doctor.

Let us know how you are doing! Take care!

It's my understanding that all TNFs can assist with everthing but strictures.

I had a rectal and vaginal (yeah talk about sexy) fistula and remicade assisted with the healing process they were reduced by about 80% but never went fully away. I think part of the problem was that I was also steriod dependent at the time and that can interfere with healing. I also use to get mouth ulcers and they would disappear too.

At the time Humira wasn't approved so I had to be premedicated with benedryl and steriods before my infussion and they had to infusion me real slow (took 4 hours) or else I'd start shaking violenting and vomit then get hives all over my body.