I am a 54 year old ladt inhave recurrent bouts of this horrible disease for 20 years,

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been in hospital 3 times in the last 3 weeks, this is the first time i have had severe bleeding and also an abcess the pain has been awful and inhave been filled with so many lots of antibiots metro and cipro told by the hospital that my disease has now progressed to a life threatening disease has frightened the life out of me here  in england they say they treat 95% of patients with antibiotics and only in 5% do a resection I have never had good care and have ni had a colonoscopy for nine years, now waiting for 6/8 weeks for a sigmoid they now dont want to do the coloniscooy, feeling completely floored, drugs making me feel rough and my bowels feel like they have been ripped open, eating very lightly and only soft foods,,

Feel that there is not enough research into this disease, feeling floored 😢

 

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  • Posted

    I’m so sorry to hear about your situation!  I went through most six months of hell before I finally had colon resection surgery four weeks ago. I can honestly say that, although I’m still recovering and have some minor pains here and there, I am 1000% better than I was and have a very positive outlook going forward. If at all possible, I would highly recommend you find a Doctor who can refer you for surgery to get that bad part of your colon taken out. 

     just curious, you didn’t mention much about your diet. What types of food are you eating when you’re trying to heal from an attack? Are the doctors give you any advice on what you should be doing with your diet at all? 

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    • Posted

      Hi thanks for your comment, i a. In salisbury england where they say they will only operate in  5%of cases  95% they treat with antibiotics. I am on a low residue diet but any advice would be helpful 
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    • Posted

      Based on what you said, you’re long overdue for a colon resection procedure IMO.  In my case, I had one attack followed by two other ones in the course of a 60 day period.  That was enough for the doctor to recommend me for surgery. Trust me, once you get the surgery done, life will be good for you. You can go back to a normal diet without having to worry about whether or not you’re eating something that’s going to cause another flareup. Technically, it’s a major surgery, but mine was done laparoscopic with the main incision about 6 cm long and two 1 cm incision as well. I had 13” removed (Sigmoid and partial Descending colon) as well as appendix and even a small hernia that I wasn’t aware of! Within 2 weeks, I was up and about with no problems and my diet moved from low residue to reintroducing fiber. Now, at 4 weeks, I’m on a normal diet, walking 1.5 miles a day and feeling great!

      In your case, I would say go to full liquid diet for a few days, then very slowly introduce soft foods leading back into low residue. Once you feel 100%, go high fiber. 

      I hope this helps!! Good luck to you!!

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    • Posted

      Thank you think i need tomlook for another consultant, i think because i have lots of pockets they are saying nomtomooerating as they cld be resectioning bad back to bad will see once i have had my test done. Just feel we DDs get overlooked as apposed to Chons yet our condition can be just as bad. Good luck with your recovery .where in the world are you?
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  • Posted

     I forgot to mention. I also had an abscess that was about 10 mL which I was hispitalized for to have drained. My surgeon advised me that once you get an abscess, you are at very high risk for future abscess and infection. This makes the disease very very difficult to manage.  With this complication, the best option is surgery.  I’m very surprised that your doctors are not recommending surgery based on the fact that you’ve had an abscess in the past. 
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  • Posted

    I am so sorry bev I feel the same as you do I am 60 years old I live in Colorado and the doctors I have been to contradict each other including the two surgeons at two different hospitals. More research is needed they say every person is different on what food they can tolerate I was on liquid diet for 3 days now 10 days of soft diet still in terrible pain loss of sleep and extremely weak l have gasometry appointment Wednesday afternoon if any useful advice is given I will post Good luck and hang in there
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