Posted 8/29/2010 7:42 AM (GMT -7)
Hello All, I am in very bad space for the past few days and just need a forum to "vent". I can't talk to anyone about this anymore, they don't understand and can't help and I'm tired of brining everybody down around me by "opening up" about it. I have decided after praying for healing after 8 months, that the answer to this particular prayer must be "no". "No healing for you" And I have trouble accepting that.
It's a fistula, and I have tried diets and every medicine they have given me. Every day is the same, passing stool thru the fisutula all day long. In 8 months, I've had maybe 5 good days, where it didn't hurt so much or output so constantly.
Initially, I was only working half days and have proceeded up on that regard, to full days and now full days plus more work (we are very busy). And I'm grateful to have my job. But tired of this life where I have to force myself to go to work with a smile on my face and do mywork wearing a poo-soaked pad. I have to take a break every hour to go clean up, but still, it's awful. The daily details of my life make me sick. And I KNOW it could be worse, which scares me even more.
Yesterday I had an MRI, and Wed I start remicade. Which I'm scared to do, as they held off on it till now (post hUmira- which did nothing but ruin my feet - now they tingle and hurt all the time). I had remicade 10 yrs ago, and it worked, but I wasn't so far gone, and I'm scared silly of a bad reaction this time around. They will premedicate me, and I am taking zyrtek now to prevent that, but still, scary. And I am almost wishing for death at this point, just so tired of carryiing on and not being able to do anything to change it! I guess I have lost my fight. I've tried to be positive, I've really tried, but I just can't anymore and have been crying without being able to control it since Thursday. The tears just come when they will. Shaking my fist at God, the heavens, whatever IS.
Because of the tears, my doctor sent me to a counsellor this week, and I'm on a waiting list for a 2nd visit with them so I can get on antidepressant. Three weeks more of waiting for that. Explaning this mess to a counselor was weird too. They seem to think an anti-depressant will cure everything. Well, it's not going to change the fact that I soil myself on a moment to moment basis, and my nether regions are constantly on fire. RRR. Just sending this post out, I don't know what response I hope for or even how to help myself anymore. I am off food, and just drinking water, eat to live only, to try and lower my output now. Probably a stupid plan, bit I have really had it with food, the very idea makes me sick. Has anyone come out of this place and got some hope back?
49 year old woman w/ fistula & crohn's
off humira for 2 weeks, waiting for remicade on 9/1
on lialda, cipro, celebrex, oxycodone, lorazapam, benfiber & vitamins