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Long time Crohn's survivor

I was DX with Crohn's when i was 15, I am 40 now.
In the beginning things were pretty rough, I have CD colitius and perioanal disease with multiple fistula. The fistula were the worst; very painfull, very nasty and very dammaging to your self image and self worth (especually at that age).

I went thru every medication there was, even spent 6 months without eating any food...that was fun...nothing really helped.

Then Remicade came around and i got into the test groups for it, it did take a year of the stuff before we started really seeing improvements. I started Remicade in 1999 and have been on it ever since. The last 7 years or so, things have been pretty good. Fistula's closed up, no pain; just loose bowel and bouts of diarrheah.

About 3 or 4 months ago though, i have been feeling...pressure...in my but; kinda felt like there was a balloon in there...started noticing disscharge from anus (infection). Things at my work are stressfull and busy so i did not attend to it like i should have. Bowel movements became harder and stool diameter decreased. Was off at a work training school for a week, things got way worse...managed to finish the school (got an %100); managed to somehow drive the 8 hour trip back then collapsed and went to the ER.

Bad stricture at the ileocecal valve (a spot i have always shown irritation).

We did an Illeocolostomy (sp?) which went well other then the surgical staples making me bleed out into the intestines...anyway...home recovering. Learning how to poop all over again and trying to deal with the bad pain of re-opened fistula's again. These are producing a lot of fecal matter which really is painfull :C

Getting a promethius test ran soon to see if i have bult up anti-bodias to Remicade.

...I go back to work monday, not sure how i am going to fair...all these years of fighting and i feel like giving up and asking for dissibility so i can stay home near my bathroom and focus on ME and healing without the stress of work....

But since i have had tons of experiance with dealing with this disease, I thought i would seek out others. Mayhaps i have somethng usefull for you; or the other way around
 

Astra

Moderator
Hiya v dragon
and welcome

Hang on in there, so glad you're with us, lots of support here for you.
It's good to know that you've got tons of experience and can help us with it.
Hope your Remi hasn't failed,
good luck
Joan xx
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

The first thing that pops to mind is how effective remi has been previously considering the continued loose bm's and then the scarring and fistula you have now developed - was your doc aware of the previous loose bm's and if so what was their reasoning for this? I take it that this is still the only med you are currently other than the pain meds from the op? It may be worth also asking your doc to now keep an eye on your vitamin levels as it is common for people with crohn's to have deficiences in this area.

I will be keeping fingers crossed that things can start to feel better for you soon hun.

AB
xx
 
Hello and welcome to the forum.

The first thing that pops to mind is how effective remi has been previously considering the continued loose bm's and then the scarring and fistula you have now developed - was your doc aware of the previous loose bm's and if so what was their reasoning for this? I take it that this is still the only med you are currently other than the pain meds from the op? It may be worth also asking your doc to now keep an eye on your vitamin levels as it is common for people with crohn's to have deficiences in this area.

I will be keeping fingers crossed that things can start to feel better for you soon hun.

AB
xx
Well..considering the fact that i was pretty much a walking zombie of pain before...Remi has worked well for me untill now...they were aware and i was getting scoped once a year. Everything looks good except for the two same areas (one being the now removed part). The reasoning was that i was functioning somewhat more normally, not in pain and surgery is evil, bad, and not something i should do unless in dire need....

I take Airborne for vit's i know us CD's people have issues with vitiman and mineral absorbtion. My CBC and Chem7 results were always good that were drawn every remicade.

I am hoping this flair up was a result of being overworked and over stressing about work and how to pay for things...like remicade...healthcare in this country is broken. 1/3 of my income goes to healthcare costs and we are not making ends meet on the other 2/3rd's. I need a better job and one with group healthcare.
 

Angrybird

Moderator
Location
Hertfordshire
I should think the stress you have had to deal with most probably aggrivated the area already not fully under control. Have you been advised on any type of diet to follow at all? Is airborne an over the counter vitamin or something precribed by your doc?
 
I should think the stress you have had to deal with most probably aggrivated the area already not fully under control. Have you been advised on any type of diet to follow at all? Is airborne an over the counter vitamin or something precribed by your doc?
not specifically on the diet.

Airborne is an over the counter vitamin
wikipedia has a good artical about it..i would link to it but i have not posted 10 times yet.
 

Angrybird

Moderator
Location
Hertfordshire
It may be worth getting a specific level check when you next see your doc,do you have an appt date booked for this so you can also discuss the results with regards to the Remi?
 
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