Bad Day...need to vent...

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Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 9/8/2007 5:16 PM (GMT -6)   
Not feeling soo good today. Keep hoping to get better. Just want to not go to the bathroom, just want to not be in pain. Losing so much of my hair (think it's combo of Remicade, prednisone, and malnutrition). The new school year has started and I wanted to be back at work. I had 2 surgeries in April and I still bleed from them...but the pain....I am soooooooooooooooo tired of the pain. Take pain meds but tired of the meds, just tired of being sick. What did I do wrong? Is this some sort of karmic retribution? Am I not sucking it up enough?

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Date Joined Sep 2006
Total Posts : 2527
   Posted 9/8/2007 5:58 PM (GMT -6)   
I understand what you are going through. I have been Dx with Cd since 1987. This year my ileum perforated causing me to have an emergency resection. One week later I was having more surghery since my colon didnt wake up casuing toxic megacolon. That got me my temp ostomy. The dumb resident got feces in my incision 2 times and after me reiterating that it needed to be flushed she said it would be fine. That caused me to have the luxury of a wound vac from the end of February until mid to late may. I also had an abscess on my l side but too small to place a drain, the one I had on the R was large enough to place a drain. My Dr was on vacation so his assoc was taking care of me. The following day there was little to no drainage in the bag (the abscess bag) so I underwent another CT scan (I have had 17 CTs since February). It appeared that the abscess was gone so they pulled the drain. I remained in the hospital for a few more days and waited until my Dr returned. I went home with a PICC line for IV antibiotics and IV fluconozal(sp?). The next day I was readmitted and the abscess was back, the next day they went to place another drain and it was gone. I remained in the hospital for another week or so and went home with just oral antibiotics. One week later I was back in the hospital the abscess came back, this time they were able to place another drain, come to find out the abscess made a fistula to the stoma and the incision and was draining in both places making it appear to disappear. The abscess never fully got better with the drain placed and 4 months after the ostomy Sx I had it reversed so they could surgically remove the this point I still had some drainage thru the incision from the abscess fistula.

The surgery was more complex than expected, they removed more of both intestines, reversed the ostomy, removed the abscess, removed mult adhesions, and had to scrape my abdominal walls due to the abscess causing peritonitis. I had a localized infection since one of the nonabsorbable sutures grew in too well that the Dr couldnt remove the full thing he said it would make its way out. It did and it popped like a zit, it finally healed fully last popped july 22 (the day my nana went into the hospital). I had to pack gauze in it to wick out the infection and to make sure the skin didnt heal over the infection. I have had 4 family members pass away since may, my nana passed 2 weeks ago. I was cleared by my surgeon to return to work Sept 4th with certain limitations til sept 20th. Once they heard my limitations even though they were temp, they laid me off.

Still having D from my surgeries, darn GI either never got my message about starting me on questran which he had suggested and my surgeon last time I saw him thought it would be a good idea. I finally gave in and decided drinking some grit is better than days full of D....

Now with no more TDI checks and due to the "limitations" I have I have a phone interview with unemployment the 13th to see if I qualify for unemployment. If I am approved it will take an addtional 3 weeks to get any check from them.

And they say try to remain stress free............I still have to take pain meds on occasion I finished the fentanyl patches a cpl weeks ago cutting myself down when I felt appropriate with my Drs guidance. If only my joint pains would subside without the darn pred, the new GI wont put me on remicade till I see a RA dr...havent seen one in this state since 2001 so I am a new patient to whatever RA I see even if my old one. To see him I would have to wait til OCT, my PCP office got me an appt with a new one Sept 18th...hope I can stand the pain til then. I keep medding myself with short doses of pred for when I can barely walk or have job interviews...dont want then to think I cant walk.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

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Date Joined Mar 2007
Total Posts : 4527
   Posted 9/10/2007 9:18 AM (GMT -6)   
Hi sorry your not feeling so good How long have you been on the Rem? I don't feel that way about my meds so hard to help with that just wanted to say hope things get better soon .What were your operations for and why do they still bleed? lol gail
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