Hi everyone,
I'm really not sure how this all works but I'm new to all these forums. Let me start by saying I started getting constipated when I was pregnant with my second child back in 2008 everyone said not to worry it was just a pregnancy thing. I let it go. After she was born the problems continued to get worse, bleeding, mucous and diarrhea. I called the doctor they set me up for a sigmoidoscopy. The doctor said I had proctosigmoiditis ( ulcers in my rectum all the way up to the transverse part of colon.) so they put me on all kinds of meds. I ended up pregnant again with my 3rd baby. That pregnancy made me flare up so bad, but I refused medication for the baby's sake. After she was born I ended up catching c-diff and was hospitalized for 2 weeks. I had like 5 colonoscopies thy could never get to the ileum because I was so swollen they didn't want to go through my colon. So more medications, enemas all kinds of treatments for ulcerative colitis ( nothing helped ) I continuously got sick losing so much weight. I ended up so sick again I was hospitalized this time because my colon swelled up so big that it almost burst ( Toxic Mega Colon ) My poor husband and children thought this time I was going to die because my fever was 106.4 I was so out of it. Luckily they caught it in time that they were able to give me antibiotics and get me better. After this scare the doctors and I decided the only way to cure what I had ( ulcerative colitis ) was to remove my entire large intestine. So in 2011 I had it removed and they made a jpouch out of my small intestine with a temp ileostomy. I thought this was it I was going to get better we cured my disease!! Yay. A few months later I got pregnant with my 4th child. ( after they told me chances of having a baby were very slim). Luckily I had the ileostomy removed before they knew I was pregnant ( that's a whole different story) As my pregnancy progressed they were concerned because I all the narcotics I was taking ( all prescribed) 360mg of Oxycotnin a day plus about 80mg oxycodone a day. I thought the baby wouldn't make it and if he did he would have so many problems. So I delivered a healthy baby boy at 37 weeks at that time I was only 104lbs. After delivery I was having a lot of problems with my jpouch initially they thought it was pouchitis. But oh no I had more ulcers all in my jpouch. This was not what I wanted to hear, I ended up with another ileostomy but everything that could go wrong with an ileostomy did, I ended up with a blockage and hospitalized again, worst pain I have ever felt. Then the infection started I went home for a few weeks then I went back to the hospital for another 2 week stay. Going home for the 3rd time with a picc line for antibiotics. (6 weeks). Through all this fun I still only had a diagnosis of ulcerative colitis, come on really?? Mind you I had all kinds of Crohn's disease symptoms ( huge ulcers in my mouth, erythema nadosum (large lumps under the skin from my knees down) bleeding, mucousy stool, diarrhea up to 20 times a day) yet no doctor would diagnosis me with crohns I think they were afraid to admit after all these years they were wrong. I took it upon myself to go to Mass General where the doctor looked at my records and said are you kidding me you definitely have Crohn's disease and I'm so sorry that you have had to go through all of this because if we had just figured that out back in 2008 or even 2011 we could've saved your colon. I wanted to cry so bad, everything that me, my husband and my poor children have had to go through over these last 7 years has been hell!! Also did I forget to mention I worked full time through all of this at a hospital. I was a phlebotomy supervisor for over 11 years, I recently decided I couldn't do it anymore. Right now I'm scheduled to go in for a jpouch excision and a permanent ileostomy. Hopefully this will alleviate all the abscesses ( that have seton strings in them ) that I keep getting. This disease has ruined my life for the last 7 years and I'm tired of it. My poor husband has been so good through all of this, I couldn't imagine not being able to be intimate with my new wife for months on end once it was over a year. We were married August 2008 right before all this started!! We joke around and say I'm allergic to him. I'm so sorry for going on and on but it feels so good to get this all off my chest. Even as long as this is it's really only a quick summary I'm sure I've missed quite a bit of info but I thank anyone who reads this truly I do.
I hope you feel better soon!
