Double bag nightmare

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

Yes, someone is looking over me and what a relief that is.... I do use absorbent powder which turns it into a jelly form, the only problem being I have tried changing bags a few times as my current bag is a clear front but the other bags either don't stick or don't work properly with the absorbent powder. The majority of the time I don't mind whether the output is thick or runny but if I have to change to one of these less forgiving bags then it would be easier being a thicker consistence without being as thick ad the jelly form.

Dbtennessee thank you very much for your kind words, however, the truth is not about me being strIng, more the fact that I had a lot to push me. I was due to get married in June before I got Ill, I spent the entire time telling my fiancé (now wife and a nurse at the hospital in currently residing at) that I would be standing at te end of he aisle in church as planned. Unfortunately I didn't make it but we did postpone the big day for next year where we will have a blessing and a reception and instead we married in the hospital chapel with around 80 of our friends and family. We are also expecting our first child (a baby boy) on December 13th which is a massive incentive for me to keep battling the weight so I can go home. I have been told I will be on the tpn feed until my next operation which is looking to be another 9 months.

Wow! You have been through a lot! I don't have anything to offer, but I pray that you are able to get back on track soon. I believe you came all of that for a reason, so I am hoping that things start to improve right away.

B'Dereh,

I have 2 stomas because the 1st wasn't working properly so when they took me down for my second emergeny op, they found that my small bowel had perforated, causing my poo to be leaking into my veins, poisoning my body, they originally tried stitching it up but after a few days, it perforated again and they had to bring a flush stoma using my small bowel as well. Now the flush stoma is really active and the original stoma hardly works. This will change when I eventually have the flush stoma reversed but that won't be until around April. I am eating and I've been banned from all fruit an veg. I am basically eating burger king and KFC everyday with the occasional curry. My daily intake is around 3000 calories plus my tpn feed. I weighed myself yesterday an I've finally put 2.2 kilos on this week.

Yay for the weight gain! There is a lot of highly nutritious food that is high calorie - keep up what you`re doing and throw in an entire avocado (ask doc if that is allowed; it has no fiber as far as I know), hefty smooth-nut-butter toasts, mega bowls of pasta.
I am in Paris at the moment, so I`m confronted with at least five pastry shops on the way down the street to the metro, two cheese shops, two more places selling meats of all kinds raw and ready to eat, one goose liver shop, two Chinese restaurants, two brasseries and one pizza place, if I count it all. You would do very well with all this; which I consciously avoid.