Community Forum

oh, arent these a joy to have...just when you think diarrhea on a daily basis isnt enough fun b/c theres not enough colon left to absorb..and immodium is your best friend...now my abcesses and fistulae are back and I am passing poop and gas out two ends...sometimes simultaneously...gee, I almost can make music when it comes out the front...gotta keep my warped sense of humour...it keeps me going and going and going... any suggestions?  Been banded before like a duck with those rubber bands they call ceton drains...I think its my only option unless this humira kicks in and knocks it out.  Remicade is not my friend..mouse proteins and I are not compatible...anybody else out there with this fun?

 Reply posted for mystory.

I am sensitive to medications as well.  I can't do sulfa drugs, 6mp, imuran, remicaid - they are all too harsh for my body.  I am now on LDN.  Have you looked into a low dose of naltrexone for your illness. Good news is that the medicine is cheap, effective and SAFE!  My Goodness, with all the toxic meds out there, LDN looks like a God sent medication.  If you want more info about it , let me know.  

 Reply posted for busymomofthree.

Hello,

  It looks like I may have the same problem as you all. I'm going for a ct scan tomorrow to see If that Is the case. What doesn't kill you makes you stronger right???? right??? I am scheduled for surgery next wed. to break up the 5 fistulas I have in my small intestine,removing some inf. in my illeum, removing a piece of my colon, and checking out that fistula that they think Is connecting to my uteris... ugg. I was diagnosed in 1998 and was in remission and unmedicated since then. Started with these issues actually after my daughter was born in April. Guess I didn't realize how serious this disease is..... I'm happy I have great support!! As I hoipe all of you girls do as well, would like to talk to people who understand. It always helps!!

 Reply posted for busymomofthree.

I too have struggled with this issue off and on. Thank goodness you are keeping your sense of humor. Although it is no fun when you have to make jokes about such things. I had been on Remicaid for about three years & it worked great & then no longer did anything. I did Cimzia & Humira but neither did anything. Finally I went to Tysabri, although I didn't really want to. However, it has been great and I almost all of my symptoms have gone away. Not sure if you have thought about it, but might be worth talking to your doctor about. Good luck

 Reply posted for busymomofthree.

I took Humira before, and it didn't help me at all.  They kept telling me to wait for it to work... and I waited for 2 or 3 months. Then I changed doctors bc I was sick of waiting, and when I asked how long it normally took, the doctor who prescribed it wasn't able to give me an answer.  Anyway, I am pretty sure that I was told that if you have a fistula, Humira won't do a thing about healing it.

 Reply posted for busymomofthree.

I am dealing with stubborn anal fissures and fistulas.  Have tried nitropaste, surgery, Humira, and steroids and still dealing with issues.  I was just about healed and started to flare again last week....I am so sad.  So frustrating that nothing is working.  I am only 29 and married. Feel bad that there is no sex life to talk of because I don't want anything even close to that area in general.  Thankfully my husband is so understanding and supportive. I don't know what to do or try next for treatments and I think my docs are getting stumped too.  Thinking of trying Remicade as I haven't done that yet, but the potential side effects scare me.

 Reply posted for busymomofthree.

I too have the lovely recto-vaginal fistula--I also have hydradenitis suppurativa as well--now I drain from just about every orafice possible! I tried Remicade--it attacked my joints and I was unable to move my arms or legs--it was very scary. Also tried Humira, which caused me to have psoriasis and a draining sore on my leg. Have tried just about every med out there, and, I've either had a bad reaction or it ended up throwing off my liver enzymes. You really do have to keep your sense of humor, although it does get REALLY hard sometimes, because nobody really understands unless they have this dreadful disease. Am feeling icky right now, just dropped off my stool kit at the hospital to check for c-diff.