Hi,
I have been diagnosed with crohns disease for about 5 years now. However it took the dr's almost 1 year to diagnose after many tests. They have found the crohns in my terminal illium which is quite common apparently.
Whilst waiting for the dr's to diagnose my condition I lost over 3 stone, I dropped to just 6 stone, was malnurished and had very achey and sore bones due to this, along with the other ailments that come hand in hand with crohns.
I've been on various different types of medication for this, but currently I am not on anything. However, I had surgery last year. The problem with having crohns caused my bowel to prolapse. I had a ball the size of a grapefruit pretruding from my back passage each time I tried to go to the toilet.
I tried telling dr's about this and eventually got to see my specialist nurse, after waiting a few weeks.....uncomfortable weeks! The nurse suggested I had piles, I told her the size and even showed her a picture as I didn't feel she quite understood. I was then referred to a surgeon.
After a number of embarrassing tests the surgeon confirmed my bowel had fully prolapsed and that I would need keyhole surgery to attach (staple) my bowel to my back bone. The surgeon also informed me this was not a permanent fix and that it would eventually prolapse again.
The surgery went well, and I was back in work after 2 weeks recovery. 1 month after the surgery my back was aching and feeling like something was tugging, very heavy also.
I called my nurses constantly, worried. They eventually got back to me and I asked for a follow up appointment to discuss my concerns and find out if it was normal. They got me an appointment, 2 months away, then, 2 weeks before the appointment wrote to me to say they had to cancel it!
2 months after the cancellation notice I am still waiting for it to be rearranged. Last week I was in agony with the same feeling of dragging and heaviness and also aching. I was also vomiting after I was eating. Worried I may cause more damage as I had not 'been' the toilet in 2 days I called my nurses over 15 times and left 3 voice messages and even emailed them. With no response I called my specialists dr's secretary who advised I would need to speak to the surgeons nurses instead! She very kindly chased this different nurse for me and they are now trying to re-arrange my appointment.
Sometimes I feel so alone and stuck with this problem. No one can answer my questions or re-assure me, and my close family worry so much as they cannot help either.
Has anybody else had a prolapsed bowel due to the crohns? I would love to be able to talk to someone who might understand?
Thanks
Kit
I have been diagnosed with crohns disease for about 5 years now. However it took the dr's almost 1 year to diagnose after many tests. They have found the crohns in my terminal illium which is quite common apparently.
Whilst waiting for the dr's to diagnose my condition I lost over 3 stone, I dropped to just 6 stone, was malnurished and had very achey and sore bones due to this, along with the other ailments that come hand in hand with crohns.
I've been on various different types of medication for this, but currently I am not on anything. However, I had surgery last year. The problem with having crohns caused my bowel to prolapse. I had a ball the size of a grapefruit pretruding from my back passage each time I tried to go to the toilet.
I tried telling dr's about this and eventually got to see my specialist nurse, after waiting a few weeks.....uncomfortable weeks! The nurse suggested I had piles, I told her the size and even showed her a picture as I didn't feel she quite understood. I was then referred to a surgeon.
After a number of embarrassing tests the surgeon confirmed my bowel had fully prolapsed and that I would need keyhole surgery to attach (staple) my bowel to my back bone. The surgeon also informed me this was not a permanent fix and that it would eventually prolapse again.
The surgery went well, and I was back in work after 2 weeks recovery. 1 month after the surgery my back was aching and feeling like something was tugging, very heavy also.
I called my nurses constantly, worried. They eventually got back to me and I asked for a follow up appointment to discuss my concerns and find out if it was normal. They got me an appointment, 2 months away, then, 2 weeks before the appointment wrote to me to say they had to cancel it!
2 months after the cancellation notice I am still waiting for it to be rearranged. Last week I was in agony with the same feeling of dragging and heaviness and also aching. I was also vomiting after I was eating. Worried I may cause more damage as I had not 'been' the toilet in 2 days I called my nurses over 15 times and left 3 voice messages and even emailed them. With no response I called my specialists dr's secretary who advised I would need to speak to the surgeons nurses instead! She very kindly chased this different nurse for me and they are now trying to re-arrange my appointment.
Sometimes I feel so alone and stuck with this problem. No one can answer my questions or re-assure me, and my close family worry so much as they cannot help either.
Has anybody else had a prolapsed bowel due to the crohns? I would love to be able to talk to someone who might understand?
Thanks
Kit
