Hi,
I am new to this forum becz was in Jpouch forum...no more J-Pouch. After 20 yrs it finally went caputz!
Not in the way I expected but then again what in life ever really goes as we plan. I had a fairly good run I say that with true sinscerity but reflecting back on my 24 surgeries throughout, it was better than the alternative...death.
From diagnosis at 19 with UC to full blown peritonitis and emergency surgery and 3 blood transfusions later was 6 mo. Dreaded disease was diagnosed, misdiagnosed and diagnosed. I feel like a ping pong ball. No granulomas so no CD or so I was told but finally after years of strictures, obstructions and surgeries to remove more bowel and a Prometheus study on my 7 yr old showing markers for CD to my surprise due to the fact that my Mother has been diag. with UC, I've come to the conclusion and countless dr.'s as well it is and may remain a mystery for the rest of my life. I am more likely leaning towards CD in my heart but noone can say for sure. I had been sick since October. My Jpouch prolapsed(collapsed) was twisted, angulated and as thin as paper mache from all of the blockages I suffered over the yrs. But as we all know who deal with this it seems normal at the time. Life throws something at you and just dodge it! This time was different though I suffered from C.diff which I picked up at one of the foremost Hospitals in the country I won't name names ofcourse, after undergoing another blockage due to prolapse and they sent me home. I pleaded with all my colorectal surgeons please operate. I don't think I can make it this time. To no avail. I was told take Belladonna opium suppositories, do Kegel excersises, biofeedback and finally the poor thing got a hole and I ended up in ICU for a week 2hrs from death and 2 collapsed lungs, peritonitis had set in again. Was this world going mad or was I just in that. .0004% of people that happen to get septic twice and live. Well the Gods were looking down on me I guess. Anyhow I did not have the luxury of having the best surgeon but he was a compassionate one. This time it was an on staff ER surgeon that saved my life once again unfortunately though the stoma sunk in my body and caused a blockage the first time and two other times prolapsed. Well on the third prolapse I was able to beat the system and my Gastro admitted me to a Hospital were there was a well seasoned Colorectal surgeon and his team on staff so we could plan the surgery to repair and relocate the Ileostomy. As luck would have it I wound up getting Streptoccoccus in my abdomen and they closed me back up. Yup Septic again, and collapsed lungs. I didn't think I would live through it twice but to live through it three times!!!!Now that's a miracle!
Result still not sure. Have just been out of hospital again for fever, chills and joint ache, belly pain etc. But the labs ct came back clean??? Gastro's want me to go on Humira but with all the trouble's I've had with weird infections...get sick at the drop of a hat. I don't know what to do. I'm ready to throw in the towel and just say no. NO more biologics (was on Remicade for 1 1/2yr but went into anaphalactic shock twice so that had to go) NO more drugs Sulfa, Methotrexate, buedesonide and NO more searching for answers. Just eat a balanced diet which I feel has helped me more than anything and try to pace myself...I'm 42 now. Not as easy to bounce back like when I was 20. Well my message is one of optimism and hope. If I can live through all of this and still be able to talk about
it I guess I'm doing fine.
My 7 yr old agrees
It's a long hard recovery removing jpouches to ileo's and it's also not to easy relocating stomas but we manage. ONE DAY AT A TIME(or hour)lol.
1992 diag UC
1997 diag Endometriosis
over 4 bowel resections and numerous adhesions
Ballooning for strictures
Total radical hysterectomy
6 surgeries since February '14 alone
Still keep on tickin!