- Joined
- Jan 14, 2012
- Messages
- 25
Hi. This is my first post on this forum although I have been reading it quite regularly for about a year and it has been very helpful 
I was wondering if anyone could give me some advice. History: I was diagnosed at age 13 after 6 months of hell and dropping to 4.5 stone. After another 6 months of multiple drugs and NG tubes and line to the heart (have forgotten what this is called?!) I completely recovered and had absolutely no symptoms until my 21st birthday in 2005. The pain was horrific and constant, and the diarrhoea was unbelievable. I was registered with a specialist in Nottingham and all anyone wanted to do there was give me steroids. They did a barium meal thing and an endoscopy and concluded “mmm...it’s a bit inflamed. Have some more steroids.”
After 6 months of pred the pain was better but I was still going to the toilet all the time. I got fed up with steroids and simply decided to stop taking them and to stop seeing the doctors at the hospital I was registered with – seemingly they were content to keep me on pred and not do any further tests.
So for the next 5 years I just put up with the diarrhoea. Looking back, this seems really idiotic!! But I had a job working from home and I wasn’t in any pain...and I guess it just got gradually worse over time but it just became normal life and I actually forgot what a non-liquid bowel movement felt like. But in 2010 I decided to move to London and get a proper job....and finally snapped back to reality that this couldn’t go on.
So, I got my GP to refer me to a hospital in London, and suddenly it was all systems go. MRI scans, colonoscopies, Remicade, methotrexate...
Things got a lot better. I stopped needing the toilet 10 minutes after I ate anything, I reduced from going to the toilet 10-15 times a day to 4-5 times...and I stopped having such watery bowel movements. Some were even formed! FORMED! IMAGINE!
The first MRI scan I had – shortly after I registered in London, showed a fistula from my cecum to my rectum, which explained all the undigested watery food coming out all the damn time. The colonoscopy confirmed this. I had a second MRI scan after my 5th Remicade dose and even though I felt so much better, I could tell the fistula was still open because that vile pre-MRI drink just went straight through me again (great fun lying in the scanner with a load of liquid in your rectum, desperately willing it not to come out, isn’t it?). Indeed, the results of the MRI showed no change from the results of the first MRI.
I had another couple of Remicade doses before seeing my specialist...who told me that the next step for me was surgery. I was fine with this – although things had improved loads I was still having occasional terrible days at work, running off to the toilet every hour... I figured it would be great to just get rid of the fistula because my inflammation markers are at normal levels, and my colon is completely healthy. I think my small intestine is mostly healthy too, apart from the bit around the fistula.
In November/December 2011, I experienced 3 weeks of almost no symptoms. That is – going to the toilet 1-2 times a day, and hardly any diarrhoea....followed by a less good week of more diarrhoea and more frequent bowel movements.
I then saw the surgeon for a consultation. It went a bit like this...
Me: I was feeling reeealllly good for 3 whole weeks! Maybe the fistula has closed?!
Surgeon: Are you still having bad days where you open your bowels...10 times a day?
Me: Sometimes, but it’s definitely so much better. I can’t identify the meals I’ve eaten in the toilet anymore! Don't you want to do another MRI scan before I have surgery?
Surgeon: Hmm, the fistula probably opening and closing. No need for another MRI scan. Right, let’s schedule you in for surgery.
Me: But don’t you think it might close permanently?!
Surgeon: Unlikely. If you have no symptoms for a full month, we’ll rethink, but I think we should agree on surgery.
Me: But...I mean...it’s....erm....
Surgeon: Right! So we’re agreed on surgery. Excellent.
My surgery is scheduled for the 10th February. It’s major surgery that takes 3 hours, with 7 days in hospital and a total of 5 weeks off work...and probably a temporary ileostomy for 3 months. Here’s the reason for my post (and sorry it took so long to get here!!) – I’d love your opinions as to whether I should actually have this surgery. If the rest of my intestines are healthy, is it wise to get rid of the fistula now even though it’s not causing me too much hassle – so that it doesn’t re-open in later life, perhaps when there’s more disease in my intestines and surgery will be more difficult? Or should I avoid surgery for as long as I can and just put up with the bad days and get on with it and hope that more Remicade will eventually close it? I've read what other people are going through and I feel like I should just be happy that on the whole I'm quite well. Maybe this is as good as it's going to get for me anyway and the surgery will be a bit pointless in terms of feeling OK?!
Thanks to anyone who has read this
I was wondering if anyone could give me some advice. History: I was diagnosed at age 13 after 6 months of hell and dropping to 4.5 stone. After another 6 months of multiple drugs and NG tubes and line to the heart (have forgotten what this is called?!) I completely recovered and had absolutely no symptoms until my 21st birthday in 2005. The pain was horrific and constant, and the diarrhoea was unbelievable. I was registered with a specialist in Nottingham and all anyone wanted to do there was give me steroids. They did a barium meal thing and an endoscopy and concluded “mmm...it’s a bit inflamed. Have some more steroids.” After 6 months of pred the pain was better but I was still going to the toilet all the time. I got fed up with steroids and simply decided to stop taking them and to stop seeing the doctors at the hospital I was registered with – seemingly they were content to keep me on pred and not do any further tests.
So for the next 5 years I just put up with the diarrhoea. Looking back, this seems really idiotic!! But I had a job working from home and I wasn’t in any pain...and I guess it just got gradually worse over time but it just became normal life and I actually forgot what a non-liquid bowel movement felt like. But in 2010 I decided to move to London and get a proper job....and finally snapped back to reality that this couldn’t go on.
So, I got my GP to refer me to a hospital in London, and suddenly it was all systems go. MRI scans, colonoscopies, Remicade, methotrexate...
Things got a lot better. I stopped needing the toilet 10 minutes after I ate anything, I reduced from going to the toilet 10-15 times a day to 4-5 times...and I stopped having such watery bowel movements. Some were even formed! FORMED! IMAGINE!
The first MRI scan I had – shortly after I registered in London, showed a fistula from my cecum to my rectum, which explained all the undigested watery food coming out all the damn time. The colonoscopy confirmed this. I had a second MRI scan after my 5th Remicade dose and even though I felt so much better, I could tell the fistula was still open because that vile pre-MRI drink just went straight through me again (great fun lying in the scanner with a load of liquid in your rectum, desperately willing it not to come out, isn’t it?
). Indeed, the results of the MRI showed no change from the results of the first MRI. I had another couple of Remicade doses before seeing my specialist...who told me that the next step for me was surgery. I was fine with this – although things had improved loads I was still having occasional terrible days at work, running off to the toilet every hour... I figured it would be great to just get rid of the fistula because my inflammation markers are at normal levels, and my colon is completely healthy. I think my small intestine is mostly healthy too, apart from the bit around the fistula.
In November/December 2011, I experienced 3 weeks of almost no symptoms. That is – going to the toilet 1-2 times a day, and hardly any diarrhoea....followed by a less good week of more diarrhoea and more frequent bowel movements.
I then saw the surgeon for a consultation. It went a bit like this...
Me: I was feeling reeealllly good for 3 whole weeks! Maybe the fistula has closed?!
Surgeon: Are you still having bad days where you open your bowels...10 times a day?
Me: Sometimes, but it’s definitely so much better. I can’t identify the meals I’ve eaten in the toilet anymore! Don't you want to do another MRI scan before I have surgery?
Surgeon: Hmm, the fistula probably opening and closing. No need for another MRI scan. Right, let’s schedule you in for surgery.
Me: But don’t you think it might close permanently?!
Surgeon: Unlikely. If you have no symptoms for a full month, we’ll rethink, but I think we should agree on surgery.
Me: But...I mean...it’s....erm....
Surgeon: Right! So we’re agreed on surgery. Excellent.
My surgery is scheduled for the 10th February. It’s major surgery that takes 3 hours, with 7 days in hospital and a total of 5 weeks off work...and probably a temporary ileostomy for 3 months. Here’s the reason for my post (and sorry it took so long to get here!!) – I’d love your opinions as to whether I should actually have this surgery. If the rest of my intestines are healthy, is it wise to get rid of the fistula now even though it’s not causing me too much hassle – so that it doesn’t re-open in later life, perhaps when there’s more disease in my intestines and surgery will be more difficult? Or should I avoid surgery for as long as I can and just put up with the bad days and get on with it and hope that more Remicade will eventually close it? I've read what other people are going through and I feel like I should just be happy that on the whole I'm quite well. Maybe this is as good as it's going to get for me anyway and the surgery will be a bit pointless in terms of feeling OK?!
Thanks to anyone who has read this
