Ostomies, abcesses and fistulas

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CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/10/2009 6:46 PM (GMT -7)   
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.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/10/2009 10:51 PM (GMT -7)   
Oh, boy. What a mess. I really do feel for you, Chris, truly. You've had a horrible, horrible time.

I don't know what to suggest about uni. I expect you'd feel really disappointed to have to defer, but I do know how hard it is to disengage once you're enrolled and committed and facing deadlines and exams. Apart from anything else, there's the pressure to keep up, to keep it all in your head, to prepare for exams... but you can't keep deferring your education forever, either.

I'm not sure if I have anything useful to say about the gas, except that my surgeon was very sad to hear that I was passing gas through my fistula, and said that it was a pretty good sign that it had cut through the sphincter muscle. And lo, it had. Whether that means that *yours* has cut through the muscle too, is a different matter. It certainly might have.

I am sending lots of sympathy and hugs your way. It really doesn't stop for you, does it? Are you still seeing your pain management docs? If so, perhaps they can offer some help, support and advice too.

Sympathy aside, have you thought about studying by correspondence instead of doing it face-to-face? I expect this would make things much easier for you, as you could do it at your own pace and wouldn't have to worry about sitting through long lectures, getting to uni, etc etc etc etc etc. Were you Australian, I'd be able to suggest a few options for you, but seeing as you're not, I'll leave suggestions to our American friends.

Keep hanging in there. I get angry at life sometimes - you're too young to be going through all this. Actually, I take that back: NOBODY needs to endure what you have, no matter how old they are.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Post Edited (ivy6) : 8/11/2009 12:08:07 AM (GMT-6)


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 8/11/2009 12:04 AM (GMT -7)   
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.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/11/2009 5:30 AM (GMT -7)   
Thanks guys.

Ivy, The only problem with maybe taking classes online is Im going to a community college first, they have a 2+2 program that you go to the community college and get your general education classes done basically, and then you can transfer to any college atleast in the state and every single class transfers to another school of your choice. Anyways seems my first English class and math class dont have the option for online study, atleast this semester, but most all of the other classes do, so saying Im planning on NOT putting it off, I was goin to take the early morning classes, which are best for me now, and the rest at home.

Its just never ending for me you guys are right lol.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/11/2009 5:47 AM (GMT -7)   
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!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 8/11/2009 1:49 PM (GMT -7)   

Boy, I really feel you. I had to push back college too. It still took me more than 5 years to get my BA and I went the same way you’re going. I went to a JC for three years (with many setbacks from the disease) and then finished the other two at UC Davis. Since I’ve graduated, I’ve gotten three abscesses and had surgery on two all three have turned into fistulas which drain ick. All of this makes me very worried to try and go to grad school, which I very much want to do but I don’t even know if I’ll get in because my grades suffered at the hands of my not feeling well.

I think you should go back to school despite your problems.

 

 I have been wearing pads every day for well over a year now (I should own stock in Always). I’m on Cimzia now which seems to be helping my CD symptoms (thankfully, since I don’t have many non-surgical options left) but isn’t doing anything for the abscesses/fistulas. I have been wishing for surgery- because of the location of my CD, I would probably need a total colostomy but now that I know you can still get fistulas and whatnot after, I’m not very happy.

 

Sometimes I suppose it could be worse, I could be dead but then I think well…at least dead people don’t get cramps and D. I don’t know what to tell you except hang in there. Maybe they’ll make a stem cell breakthrough and we’ll all be saved…or something.


Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002. Three abscesses that are now fistulas.
On: 6MP, 20mg Prednisone, Zoloft, Cimzia (working so well, I'm on Miralax too!)
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction


bdollproject
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/11/2009 4:13 PM (GMT -7)   
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!

Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/12/2009 3:48 PM (GMT -7)   
Have you considered getting a second opinion at the cleveland clinic, johns hopkins, university of chicago? The reason why I ask is that (and you probably know this already) you can only move the stoma so many times, like once or twice, because of scar tissue. Also these hospitals are involved in clinical trials maybe you would be a good candidate for one of them. There is a phase clinical trial going on for vedolizumab which is like Tysabri (its an anti antigen not a TNF) but it's gut specific not nerve so it doesn't have the brain lession side effect.
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/12/2009 4:38 PM (GMT -7)   
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?

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/12/2009 6:47 PM (GMT -7)   
yes, people have used rem for fistulas. check out the fistulas & treatment thread in myy sig.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/12/2009 11:09 PM (GMT -7)   
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.
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


Poorlybot
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/13/2009 3:20 AM (GMT -7)   
Hi my name is Sarah and I am from the UK. I have been having problems finding forums for anal fistulas only. I do not have chrohns and really feel for you guys who do. I do however have a anal fistula and have had so many ops I have lost count.............. I currently have a seton in place and I am due for another op in 3 weeks. They are trying the glue this time last resort. My last op was another anal plug but it was a new thing from the states with a button attached. To be honest I never want to go through pain like that again!! I was in agony and put on a morphine drip for 3 days...it took them 4 and half hours to get on top of the pain and I was in recovery for hours my poor mum went crazy it was only supposed to be a 30 min op. The button failed a week later and I was rushed into A&E. Anyway I am a bit concerned that I am going to be in that much pain again with the glue. I would like to know if there is anyone out there who has had the glue and was it painful?? I send my love to everyone out there who suffers with these nasty degrading things. xxxxxxxx

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/13/2009 4:19 AM (GMT -7)   
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!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/13/2009 4:49 AM (GMT -7)   
Marlowe, Yes Ive had remicade before and I know the risk of reaaction goes up, when using it for the second time, but this is usually avoidable by a combination of Prednisone in high doses, benadryl, and tylenol for the couple days leading up and the day of the infusion, its been shown that people do just fine. Yes I take humira, have been on it for almost 2 years now, and I also take Methotrexate, Im taking a round of flagy because thats good for rectal problems, atleast I have good results from it in the past. Then my normal medications.

I was specifically wondering about Remicade FOR fistulas, so if anyone knows someone or if you yourself have done this, let me hear from ya! lol

Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/13/2009 7:25 AM (GMT -7)   
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.
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/13/2009 7:39 AM (GMT -7)   
I used to get the mouth ulcers. I hadnt heard that about all TNF's honestly I'll have to check into that. I am steriod dependent I always have been except when I was on remicade.
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