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Hi all

hi all

hi, i'm just going to dive in..

i was diagnosed with ulcerative colitis in 1996. i responded well to sulfasalazine and had very few symptoms.

in 1998, about a month before i graduated from high school, i got really sick. i was going to the bathroom all the time, running fevers, passing out after standing or using the restroom. then i started getting horrible chest pains. all of the tests my doctors ordered came back inconclusive and they had no idea what was going on.

finally my gastro did a test and figured out i had c-diff. i ended up in the hospital the day after graduation and was there for 12 days. along with the c-diff i had paracarditis caused by an allergic reaction to the sulfasalazine. the paracarditis made it painful to take deep breaths and that caused the bottoms of my lungs to collapse. i was pretty sick.

after i got out my doctors didn't want to put me back on any of the 5-asa drugs because they were afraid the paracarditis would return. we tried to get everything under control with imuran, but that was ineffective. for the next year i was in and out of the hospital every other month or so getting fluids and blood transfusions.

on my 19th birthday i passed out while in the house alone and ended up back in the hospital. my gastro visited me that night and we talked about the next step. surgery. he had brought it up before, but it terrified me and i wouldn't consider it until it was the only thing left.

i went to another gastro for a consult and ended up at a colo-rectal surgeon the same day. after an upper gi and a colonoscopy everyone agreed. my colon was coming out.... the whole darn thing. good news was, i got to keep my rectum which meant i only had a temporary colostomy. 2 months later they removed my colon.

i don't remember much from the next few days except pain. i later found out that when they removed my colon and put it on the tray it fell apart, i was really lucky it didn't do that on the inside.

the next 3 months were really hard. my temporary colostomy leaked, my friends stopped calling me back and i was generally really depressed. after my take down and re-connection i spent all but 3 days of september in the hospital because my incision wouldn't heal. and then gradually it did, and i healed and got stronger. i had 7 years without any symptoms or issues. i definitely made up for lost time. i did crazy things, had a lot of fun and met the man i would eventually marry.

then, in 2006, out of the blue, i ended up in the hospital. i had a ton of pain in my abdomen, couldn't go to the bathroom and threw up a lot... you guessed it... blockage! after that i started having lots of blood in my poo, and my anus was in constant pain. i ignored it for 2 months and hoped it would stop and leave me alone. it didn't, it got worse. i went back to my gastro and found out i had a fistula and a fissure... oh the joy.... he sent me to a colo-rectal surgeon who did a fistulectomy.

then i got another fistula. at this point my doctor ordered a ton of really fun tests which all came back inconclusive. however i had enough symptoms for everyone to feel confident i had crohns.

i was put on remicade. with it came a ton of pre-meds to combat my medicine sensitivity. it really didn't do much of anything except help me gain 100 pounds i cannot lose to this day, and empty my bank account. they took me off remicade and put me on steroids and humira. that didn't do much either. (at some point in here i had a seton placed in my fistula.) during this time i had to switch to a new gastro who was way more interested in his research than in helping me treat my disease.

after 3 years with him he suggested i try remicade.... i face palmed and asked my primary care doctor to help me find a gastro she could work with to help treat me head to toe. that was a good move. i now have a team of doctors who communicate with each other about my care.
unfortunately i have recently developed 2 new fistulas. i am having a hard time dealing with it and figured who knows this better that other crohn's patients.

i hope i haven't been too negative. i try not to be that person. sometimes it is really hard to put on a brave face and go about my day. i try to remind myself it could be worse, but i tend to see both sides of an issue so i know it could be so much better.

that being said, i have been there and back again, and tried just about every med along the way, and a few surgeries too. i have had this for 15 years, and am willing to lend an ear or give some advice to help make it easier for someone else.

thanks for listening..
 
Last edited by a moderator:
Hello and welcome to the forum..:)
I dont think you are too negative just telling it as it is....Anyway it is good to get stuff of your chest and this is a good place to do it...
Thanks for sharing your story with us..
Take care..
 

Jessi

Moderator
Hi Sisiyphus! Welcome to our IBD family. You're right ~ nobody knows better than other Crohn's patients. You came to the right place. :hug:

I hope you don't mind that I broke up your main paragraph a little bit. It's hard for me to read when it's in big block. No worries ~ I didn't change anything that you wrote.

It sure sounds like you've been through a lotta garbage. That's really too bad that Remicade didn't do the trick for you. So what are you currently taking? I really hope that you can feel well soon. In the meantime, this thread may come in useful for you to find others suffering with fistulas.

http://www.crohnsforum.com/forumdisplay.php?f=76

Take care and stick around as much as you want. :)
 

xJillx

Your Story Forum Monitor
Hi and welcome. Boy, you sure have had a tough time. I can't believe Remicade or Humira really didn't do anything for you? Did you respond to steroids? What is your current treatment plan?

I am sorry to hear you have two more fistulas. I sure hope they don't haunt you for too long. You may want to check out the Fistulas, Fissures & Abscesses forum. You may find some useful info in there, but also, with your experience, I bet you can offer some good advice.
 
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