Double bag - ulcerative colitis

Hello everyone,

Well, what a year, where do I start? I was diagnosed with a hiatus hernia at the end of 2011 and I had surgery in January 2012 to solve it. Unfortunately, that was just the start of my problems and after the surgery I suffered months of sickness and pain, only to be told my doctors that it was normal after surgery and there wa nothing they could do. In may 2012, I demanded more tests as I couldn't cope anymore, after a simple scan the next day, I was told that I had ulcerative colitis and put on iv antibiotics for a week. Unfortunately I started getting worse and a very nice surgeon got involved and ordered more scans, the next morning he explained that he could tell I had been suffering the illness for many years and unless he operated on me within 24 hours, I was going to die. That day, I went through an 8 hour operation, had my large bowel removed as it was damaged beyond repair and I woke up in intensive care where I spent a week recovering and coming to terms with the illeostomy bag hanging off my stomach. 10 days later I started to feel bad again, I had 3 blood transfusions which did not help. I ended up being rushed for more emergency surgery and woke up in intensive care again, surrounded by my fiancé and parents, who were all in tears. They explained I'd been in a coma for 24 hours and wasn't expected to wake up. I was then told that my small bowel was damaged too but that was repaired. That was until a few days later when it un-repaired itself and I ended up going for more emergency surgery. I now have 2 illeostomy bags and have so far spent 13 weeks in hospital as I went down to just under 7 stone. Unfortunately I am failing to gain any weight and am on tpn feed into my veins 12 hours a day to help me. I will eventually be doing this overnight at home once funding is approved. One stoma hardly works as everything is going through the second stoma now, however it is very active. I am very careful about what I eat and how often but I can't control how active the stoma is. I am on 16 loperamide a day but have stopped the codeine as it was giving me headaches everyday. I eat marshmallows and bananas everyday but to no real improvement. Any experienced people can advise as I'd really like to get out of hospital.

Sorry for the essay.

Simon

I'm 29, having spent my 29th birthday in intensive care. I also ended up getting married in the hospital chapel on 23rd of June as they wouldn't let me out for the wedding.

My small bowel perforated, they originally thought they'd fixed it but it was too badly damaged and the stitches couldn't hold it together.

They assume from tests they did on the large bowel once removed from the body that I have had UC around 6 years. It's difficult to know if I had symptoms specifically or not because I had the hiatus hernia for 6 years too, so I think both the hiatus hernia and the UC were causing me symptoms between them but because I was only aware if the hiatus hernia, I put it all down to that. The doctors would just keep changing my tablets rather than do tests.

My 1st stoma wasn't working as well as they'd hoped originally and then when I got I'll again and they took me down for surgery, they saw that the small bowel had perforated and was leaking my poo into my body which was poisoning my blood. They created the 2nd stoma as a result of this and created a flush stoma using my small bowel where it was damaged. It became damaged a I had ulcers in both bowels as far as I'm aware...

I thought that and it took them a while to decide but I don't think it was that straightforward. I don't think I've been told everything but from the information I've picked up I think it was just a ate ulcer in the small bowel caused from te stress/trauma. I did have a few ulcers in my stomach as well which was preventing my stomach from digesting food BUT they are adamant that it is UC and not crohn's....

I'm new to this whole IBD thing, but I thought it was possible to have both UC and Crohn's...

NewtoUC, it's VERY rare to have both UC and CD. Ther are fair number of CDers who have "Crohn's Colitis," which is CD that only affects the colon. It doesn't mean that they have both CD and UC. "Colitis" just means inflammation of the colon.

Ok. I am glad you are being well taken care of! Just wanted to double check. Best wishes!

I'm sorry you are going through this, iam speechless!! I will pray for you to get better and gain some healthy weight.
Please keep us updated...

I am so sorry that you've been through so much. I definitely recommend that you visit the ostomy board here on HW. Many people with ostomys post there regularly and will probably be able to provide better information.

FIrst sry you've had to go through all of this, I can't even imagine. Second glad to see you are doing better and at home. Its awesome to hear your not going to simply use this as an excuse to lay around, and that your going to get out there and try and maintain a normal way of life. Awesome to see that your going to do the bike ride, I just love hearing this sort of stuff. Also good to see you have a great support system, and was able to still get married even with everything going on.

Congratulations on how much you have overcome so far. After all that you have been through, getting back on that bike will be piece of cake ;). Keep up the great attitude and congratulations on your marriage. Sounds like you have found a girl that will stick by you through lots!

Feel free to come on here anytime to update or get out any frustration! If you still have an ostomy and have any questions, you might find help on the healingwell ostomy board.