Hi everyone, I'm gonna try make this as short as possibl. Was diagnosed in Italy age of 8 came back to Montreal at children hospital where was treated at 11-12 left hospital in remission was never told to go back for follow ups and well parents are imagrants and not knowing the language thought I was healed.at the age of 20 gave birth to a beautiful girl my labour lasted 22hrs I pushed for 3.5 hrs had a 4th degree tear. Days after started feeling weird down there I would feel air pass through my vagina. Weeks later started cramping and runs. Went to dr. It was flu season n was told I caught a bug was put on antibiotics. Went to er dur to severe cramping and bloody stools weeks later emergency surgery due to perforated colon. Woke up with ileostomy and was waiting pathology report to see if was optioned for anal anastomoses.they tried to repair fistulas prior but after reconnection realized it failed. Ten years of frequent trips to bathroom and discomfort from fistulas. Irritation,infections, and painful intercourse. Ended up in hospital for partial occlusion which cleared after ng tub 4 days. Dr scares me saying I was at risk for rectal cancer being 10 years with diseased rectum, should consider permanent ileostomy. Very hard to except due to fact I was doing very well, no pain besides the fistulas and occasional bleeding. I looked up information and found out about jpouch. My first surgeon had then passed my file to this dr. Which I kind of was uneasy with.i mentioned the information I came across, he stated that he didn't think I was a good candidate for because of my fistulas he most likely stated it was crohns and not UC I had been diagnosed in the past. Didn't and had a difficult time believing him cause I had no symptoms no pain no diarrhea. I decided to send a copy of my files to another dr in the united states where a friend of mine was living who also had UC. And I also went to get a second opinion. They both said that because the 2 illnesses are so similar it's very hard to positively diagnose. Being that I was young and there was no signs of inflammation in my small intestine that they didn't see why I shouldn't try. So I went back to my first surgeon and asked him since he had operated on me in the past if he would do it. He agreed and got together with the dr. I had confronted the issue with and preformed the surgery in 2002 with temp loop ileo. Which I was struggling with. I used to pass stools from stoma and anal which freaked me out. They said this happens occasionally, but my luck it was on a daily bases. Months later they preformed: fistulas repair using lap and seton and the take down was done 13 months later. In the begging I was going like 20x a day was having hard time holding and was incontinent at night time. As time passed it got better but the night accidents happened at least 3-4 x a week. Due to passing stools from bottom when I had the loop ileo. Before take down didn't help for fistulas to heal so that was unsuccessful. They tried a couple more times after, they tried putting me on steroids and remicaide did 3 infusions,with no success. A year later started having back problems which lead me back to er due to severe pain. Was diagnosed with sacroilitiis. Then refered me to a rheumatologist whom diagnosed me with spondalitis arthritis. Was put on methotrexate and did okay for a couple of years. 2006 had 3 hernias that had to be repaired which is very comman when you have multiple abdomanil surgeries. That wasn't enough started having problems with my periods so had to had endometrial ablation and well the nightmare began started having severe pelvic pain. I was suffering with cysts on my overies and being 40 my gyno had suggested having a hysterectomy but due to my intestinal problems and having jpouch she would not do surgery if colon surgeon wound not be present. Little be hold end up in er due to severe pelvic pain which they could not pin point after multiple tests, realize a spot in scan image they rush me in or they see that a suture at top of pouch had let go which stools pass trough hole, so they resection and do total hysterectomy at same time and place a temp ileostomy to allow proper time to heal. This is2009 in between that they had put be on antibiotics which I have an anaphylactic shock. Due to my arthritis they decide to try and put on remicaide which I have another anaphylactic shock to about 2 weeks later.3 months later I finally go see the gyno that did my hysterectomy which was not my gyno because she works with another hospital and because ot the emergency the other one stepped in. Well she gives me news that she thinks she forgot a left ovary inside me because when they sent out my parts at pathologist it wasn't there. Figure that out!they pass a scan to see it they can reconnect me and well bad news they see a mass on my left side on my jpouch so it's delayed. So we wait to pass more rests my athritis is flaring up and I'm having still pelvic pain, they see pouchitis in pouch,so a Gi decides that since they can't give me remicaide I should try Humira. Scared of having another anaphylactic shock I insist they give it to me at hospital under surveillance. First does done all goes well, come home, start getting headaches and nausea. 1week later go for second dose, I mention how I feel and also mention I lost 6 pounds. Get 2nd shot half hour after get same symptoms. 3rd shot same thing 20 pounds lighter hey say I'll adjust but instead end up in er with silent phemonia they seize medication. May 2011 finally okay for reconection. All goes well of coarse in begging frequent liquids stools. They start me on lomotil, then another dr. Augments with Imodium+Metamucil and boom occlusion stuck at hospital 5weeks ng tub and we wait start to go but a little bit. Send me home months pass always feel bloated would not go more then 3-4 x in 24hrs not my norm. Dr says it will get better. Doesn't happen. Summer passes I get weaker on pain meds, no improvement. November 2011 I'm driving daughter back from school pain keeps getting worse I pass out while driving, end up in ambulance rushing to er, the pain and pressure emergency surgery for urethra due to pressure from intestines. 2nd surgery dec, forgotten ovary with cyst and the occlusion I had when they reconnected me was intestine that narrowed just at beginning of pouch. It gets worse the stitches open up bringing intestines to surface with perforation. Stools coming out for abdominal. Stuck in hospital another 8 weeks open abdominal no food waiting to repair damage they did. Feb 2012 fistulas formstion along pouch. Try to put surgagig to repair. FAILS!!! April decide to redo ileostomy disconnected from jpouch so fistulas can heal,they almost lose me in or, and the perforate the other urethra bring me back in or to repair fails to much swelling, 2 days later do it in radiology from outside in in conclusion was in hospital for 6 months straight.in June 29 they tried putting a stent in the fistulas tract it didn't work was to long so just put a tub to keep it open waiting to fing
D the right stent. I woke up in between the surgery freaked me out!! I have no idea how I'm still alive because breathing was a work out I'm slowly getting my strength it's been 7 months later and still feel lathargic exhausted but most of all scared of what's gonna happen. I recently changed hospital and seeing a new dr. The sad part that where I'm from it's very political changing drs so the new one has to go through all my files he says that he will try to fix the fistula but it is very complicated but spoke of using a muscle to repair it. Has anyone hear of this procedure and the se if he can repaire my muscle shinchter which has been damaged from giving birth to my daughter 23 years ago and the multiple times they tried to repair my fistula. Im really scared cause i also have a lot of discharge for pouch during day its not so bad but by end of day i cant hold it comes out on its own especislly at nighttime im soaked it wakes me up and there is an odur to it I hope I dont lose my Pouch due to medical errors. I'm sorry I know this was long please bare with me.