Hello! I'm 32 years old and since I was 20, I have Ulcerative Colitis. The first 6 year I use only medicines , 5ask, prednison, and two years of remicade. Unfortunatelly, remicade stopped working, and then I had total colectomy and j-pouch surgery. The life with ostomy was so great, so I didn't want extra surgery for recovery (also I was afraid and was very worried that I had not money for this surgery). So the next 4 years I live with ostomy and j-pouch inside me, but my life was fantastic.
But then doctors told me that the small remain of my colon is inflamed and I need surgery to remove it (and j-pouch). I agreed. After that surgery all my troubles begins. I had several blockages and then in two months extra emergency surgery because of the blockage. Then, for 3-4 months everything was very well, I gained weight.
And then one day I made a big mistake, one day I ate some jerky meat, I had blockage but didn't go to the hospital, because I knew that hospital near my home (where I had the third surgery) is very bad, nothing didn't work (bath with hot water, special tea, nothing), so I decide to put colonic tube into my stoma, and it worked! Doctors did it to me after the first and second surgeries when I have blockages so I was not very afraid. I thought that stoma will start work after I helped it, but it didn't. The next day I went to the nearest bad hospital, but doctor there told me that everything gonna be ok, and if colonic tube easily goes through the stoma, I hadn't blockage. But stoma didn't start work, I lost 6 kg for the next 5 days, I went to the hospital one more time then and the same doctor said the same things...
Also I phoned to my doctors in central hospital in Moscow (I live in the small town near Moscow), where I was treated before the first surgery and where were my first and second surgery. Their words made me desperate...they said that their hospital is only proctological and my problem is not proctological, and furthermore, they think that I have no problem at all- I should only gain my weight back and everything will be ok. They refused to help me, refused to make some infusions (I was dehydrated). It was new year time one year ago.... Sinсe for 11 months my stoma haven't worked! I use tube several times a day.
At first, I really gained some kg, but then I was so weak, I started to lose weight again, wasn't able to work, and went to the hospital (not central proctological unfortunatelly, they refused to help me again), then was another hospital, and another, and another. I spent in hospitals approximately 3,5 months this year... my blood tests were bad, also tomography and endoscopy show inflammation, so doctors put me on prednison and many infusions. They said that I had Crohns disease, but they are not sure, also they didn't know what to do with me.. I was very sick, I was only 30 kg in august.
Right now I am 41 kg (it is not bad for me, I'm not a tall girl, rather small), I returned to work (but unfortunatelly only half time), but I'm so desperate... I think that I'm only one on Earth with this problem, because doctors say that they didn't know one more such person... I dont know what to do, because doctors say that surgery probably will not help me. I'm desperate... I will be very thankfull if someone will give me some advise.
Thank you, sorry if my english is not very well.
But then doctors told me that the small remain of my colon is inflamed and I need surgery to remove it (and j-pouch). I agreed. After that surgery all my troubles begins. I had several blockages and then in two months extra emergency surgery because of the blockage. Then, for 3-4 months everything was very well, I gained weight.
And then one day I made a big mistake, one day I ate some jerky meat, I had blockage but didn't go to the hospital, because I knew that hospital near my home (where I had the third surgery) is very bad, nothing didn't work (bath with hot water, special tea, nothing), so I decide to put colonic tube into my stoma, and it worked! Doctors did it to me after the first and second surgeries when I have blockages so I was not very afraid. I thought that stoma will start work after I helped it, but it didn't. The next day I went to the nearest bad hospital, but doctor there told me that everything gonna be ok, and if colonic tube easily goes through the stoma, I hadn't blockage. But stoma didn't start work, I lost 6 kg for the next 5 days, I went to the hospital one more time then and the same doctor said the same things...
Also I phoned to my doctors in central hospital in Moscow (I live in the small town near Moscow), where I was treated before the first surgery and where were my first and second surgery. Their words made me desperate...they said that their hospital is only proctological and my problem is not proctological, and furthermore, they think that I have no problem at all- I should only gain my weight back and everything will be ok. They refused to help me, refused to make some infusions (I was dehydrated). It was new year time one year ago.... Sinсe for 11 months my stoma haven't worked! I use tube several times a day.
At first, I really gained some kg, but then I was so weak, I started to lose weight again, wasn't able to work, and went to the hospital (not central proctological unfortunatelly, they refused to help me again), then was another hospital, and another, and another. I spent in hospitals approximately 3,5 months this year... my blood tests were bad, also tomography and endoscopy show inflammation, so doctors put me on prednison and many infusions. They said that I had Crohns disease, but they are not sure, also they didn't know what to do with me.. I was very sick, I was only 30 kg in august.
Right now I am 41 kg (it is not bad for me, I'm not a tall girl, rather small), I returned to work (but unfortunatelly only half time), but I'm so desperate... I think that I'm only one on Earth with this problem, because doctors say that they didn't know one more such person... I dont know what to do, because doctors say that surgery probably will not help me. I'm desperate... I will be very thankfull if someone will give me some advise.
Thank you, sorry if my english is not very well.