Hello all,
Just found this forum and thought I should add my story. I hope you don't mind me copying/pasting it in here as most of it can be found in various places, but here it is all together and up to date. I hope it helps other people with similar problems!
(sorry about the length!)
Feb 2004 - Went to the doctors with severe heartburn that had got gradually worse until I could barely eat. It felt like ulcers around the entrance to the stomach. This was totally out of character for me as I had never suffered from indigestion before although I had been experiencing random bouts of diarrhea. Was prescribed stomach acid blockers and it eventually settled down after about two weeks.
April 2004 - noticed what felt like a boil on one buttock about 1.5" away from my anus. It felt sore if I pushed it. Later I realised that when I pressed it I could feel puss coming out from inside my back passage. This really grossed me out at the time! There has been no real pain or discomfort I guess because it was draining fairly readily and no real pressure was building up.
July 2004 - I had been ignoring the 'boil' (that I later realised was an abscess under the skin) hoping it would go away. It didn't but had grown very slightly and I could frequently feel it draining. I also now noticed another area on the same side that felt sore and deeper. This second area grew over the period of about a week to become an extremely painful hot lump. It became so painful I finally gave in and went to see a doctor who prescribed antibiotics. They had little or no effect. The abscess eventually burst through the surface and left me with an opening that never fully healed and drained puss on and off.
September 2004 - I now still had the first initial abscess just under the skin and a hole left from the second abscess next to it when I noticed a third painful lump appearing, this time on the opposite side of my anus. It was like the first abscess in that it never made it to the surface, instead the puss would drain out an opening up inside me.
Feb 2005 - Op number 1 - I was stupid and probably ignored it for too long again. It stopped draining and started to fill up with puss. A week or so later I was feeling very ill, had been suffering drenching night sweats and eventually fever. The pocket of puss was quite large by now and my doctor admitted me to hospital where I had it drained and spent two days on an antibiotic drip. The hole where the 3rd abscess was never closed.
March 2005 - Op number 2 - by now I had been referred to a colorectal surgeon who layed open the first abscess, packed it and inserted a seton. He also laid open the 3rd abscess which by now had almost burrowed all the way into my scrotum! (eeew!) This was the worst because the area of tissue he had to remove was quite large and left me with a huge gaping area of exposed flesh right in the fold under there. I was laid up for 2 weeks on morphine (and laxatives to combat the morphine) with that as bowel movements were excrutiating.
June 2005 - Op number 3 - the surgeon inserted a seton into where the 2nd abscess was (I now have 3 non cutting setons passing through the sphincter) and reopened part of the big area which had started to form a pocket again.
August 2005 - Went in for an MRI scan to try and see if there was a complex fistula linking the 3 sites or any deeper infection. Nothing other than what was already being treated showed up. They also sent off some of the excised tissue to test for Crohns and this came back negative.
November 2005 - Op number 4 - reopened the area of the 3rd abscess again as it still wasn't healing right! Setons 1 and 2 looked much better and he was hoping they could be removed at the next visit.
Jan 2006 - Op number 5 - setons 1 and 2 were left in because the tissue around them had become inflamed again and were discharging more. The area around the 3rd seton had to be opened up for a third time as it had overgranulated and puss was accumulating underneath.
End Jan 2006 - I still have 3 setons in and the wound from the last op has almost filled in, just taking a small amount of packing. I am seeing my surgeon tomorrow with one of his colleagues to discuss what to do next. He says the symptoms (i.e. the multiple fistulae and the way they settle down and then flare up again) looks exactly like CD but the tissue samples came back negative so they need to decide whether or not to treat for Crohns.
Feb 2006 - Op number 6 - Completely laid open one of the fistula (the lowest one) and removed the seton. The other two setons were tightened.
April 2006 - Op number 7 - The surgeon partially laid open the remaining two fistula (leaving the part where it goes through the muscle) as he was worried about continence issues. The remaining 2 setons were removed.
May 2006 - The first laid open fistula is nearly healed. It looks more like a groove as opposed to a cut with a tiny bit of discharge. The hope is that the other two will also heal up. They still look like two long cuts either side leading up inside me and there is still some drainage but nothing like as much as before.
June 2006 - Got a letter saying that tissue samples taken at the last op have shown that the problems are almost definitely caused by Crohns
Today - I am still getting small amounts of drainage. It's much better than it was but healing seems to have ground to a halt and there hasn't been much improvement. I saw my surgeon a few weeks back and he has refered me to a gastroenterologist in October who will prescribe some sort of medication. He his hoping that with the medication the last bits of the fistulae will heal up.
Throughout all of this I have experienced good weeks where things seem much better and then bad weeks where the drainage will increase again. I also suffer from some of the classic symptoms like random bouts of diarrehea, sweats, heartburn, mouth ulcers and tiredness.
Although this has been 2 1/2 years of pain and misery I consider myself lucky the disease hasn't caused any complications further up my bowel and a really do sympathise with those of you who have had lumps of bowel removed.
Having said that, it is, as other people have said, comforting to know that others are going through the same ordeal. Its not something you can really talk that openly about to family, friends and colleagues. Its not like a broken leg where if someone asks "how did it happen?" you can say "I fell off my bike"! Instead you have to shrug and say "just one of those things" lol! How do you tell someone you have multiple wires threaded up where the sun don't shine?
If I have learnt one thing though it is NEVER delay going to your doctor. The embarrassment of going to the doctor cost me a trip to the emergency room and also a fistula that had infected a much larger area of tissue than it would if I had gone straight away!
Anyway well done for making it all the way through this post!
Just found this forum and thought I should add my story. I hope you don't mind me copying/pasting it in here as most of it can be found in various places, but here it is all together and up to date. I hope it helps other people with similar problems!
(sorry about the length!)
Feb 2004 - Went to the doctors with severe heartburn that had got gradually worse until I could barely eat. It felt like ulcers around the entrance to the stomach. This was totally out of character for me as I had never suffered from indigestion before although I had been experiencing random bouts of diarrhea. Was prescribed stomach acid blockers and it eventually settled down after about two weeks.
April 2004 - noticed what felt like a boil on one buttock about 1.5" away from my anus. It felt sore if I pushed it. Later I realised that when I pressed it I could feel puss coming out from inside my back passage. This really grossed me out at the time! There has been no real pain or discomfort I guess because it was draining fairly readily and no real pressure was building up.
July 2004 - I had been ignoring the 'boil' (that I later realised was an abscess under the skin) hoping it would go away. It didn't but had grown very slightly and I could frequently feel it draining. I also now noticed another area on the same side that felt sore and deeper. This second area grew over the period of about a week to become an extremely painful hot lump. It became so painful I finally gave in and went to see a doctor who prescribed antibiotics. They had little or no effect. The abscess eventually burst through the surface and left me with an opening that never fully healed and drained puss on and off.
September 2004 - I now still had the first initial abscess just under the skin and a hole left from the second abscess next to it when I noticed a third painful lump appearing, this time on the opposite side of my anus. It was like the first abscess in that it never made it to the surface, instead the puss would drain out an opening up inside me.
Feb 2005 - Op number 1 - I was stupid and probably ignored it for too long again. It stopped draining and started to fill up with puss. A week or so later I was feeling very ill, had been suffering drenching night sweats and eventually fever. The pocket of puss was quite large by now and my doctor admitted me to hospital where I had it drained and spent two days on an antibiotic drip. The hole where the 3rd abscess was never closed.
March 2005 - Op number 2 - by now I had been referred to a colorectal surgeon who layed open the first abscess, packed it and inserted a seton. He also laid open the 3rd abscess which by now had almost burrowed all the way into my scrotum! (eeew!) This was the worst because the area of tissue he had to remove was quite large and left me with a huge gaping area of exposed flesh right in the fold under there. I was laid up for 2 weeks on morphine (and laxatives to combat the morphine) with that as bowel movements were excrutiating.
June 2005 - Op number 3 - the surgeon inserted a seton into where the 2nd abscess was (I now have 3 non cutting setons passing through the sphincter) and reopened part of the big area which had started to form a pocket again.
August 2005 - Went in for an MRI scan to try and see if there was a complex fistula linking the 3 sites or any deeper infection. Nothing other than what was already being treated showed up. They also sent off some of the excised tissue to test for Crohns and this came back negative.
November 2005 - Op number 4 - reopened the area of the 3rd abscess again as it still wasn't healing right! Setons 1 and 2 looked much better and he was hoping they could be removed at the next visit.
Jan 2006 - Op number 5 - setons 1 and 2 were left in because the tissue around them had become inflamed again and were discharging more. The area around the 3rd seton had to be opened up for a third time as it had overgranulated and puss was accumulating underneath.
End Jan 2006 - I still have 3 setons in and the wound from the last op has almost filled in, just taking a small amount of packing. I am seeing my surgeon tomorrow with one of his colleagues to discuss what to do next. He says the symptoms (i.e. the multiple fistulae and the way they settle down and then flare up again) looks exactly like CD but the tissue samples came back negative so they need to decide whether or not to treat for Crohns.
Feb 2006 - Op number 6 - Completely laid open one of the fistula (the lowest one) and removed the seton. The other two setons were tightened.
April 2006 - Op number 7 - The surgeon partially laid open the remaining two fistula (leaving the part where it goes through the muscle) as he was worried about continence issues. The remaining 2 setons were removed.
May 2006 - The first laid open fistula is nearly healed. It looks more like a groove as opposed to a cut with a tiny bit of discharge. The hope is that the other two will also heal up. They still look like two long cuts either side leading up inside me and there is still some drainage but nothing like as much as before.
June 2006 - Got a letter saying that tissue samples taken at the last op have shown that the problems are almost definitely caused by Crohns
Today - I am still getting small amounts of drainage. It's much better than it was but healing seems to have ground to a halt and there hasn't been much improvement. I saw my surgeon a few weeks back and he has refered me to a gastroenterologist in October who will prescribe some sort of medication. He his hoping that with the medication the last bits of the fistulae will heal up.
Throughout all of this I have experienced good weeks where things seem much better and then bad weeks where the drainage will increase again. I also suffer from some of the classic symptoms like random bouts of diarrehea, sweats, heartburn, mouth ulcers and tiredness.
Although this has been 2 1/2 years of pain and misery I consider myself lucky the disease hasn't caused any complications further up my bowel and a really do sympathise with those of you who have had lumps of bowel removed.
Having said that, it is, as other people have said, comforting to know that others are going through the same ordeal. Its not something you can really talk that openly about to family, friends and colleagues. Its not like a broken leg where if someone asks "how did it happen?" you can say "I fell off my bike"! Instead you have to shrug and say "just one of those things" lol! How do you tell someone you have multiple wires threaded up where the sun don't shine?
If I have learnt one thing though it is NEVER delay going to your doctor. The embarrassment of going to the doctor cost me a trip to the emergency room and also a fistula that had infected a much larger area of tissue than it would if I had gone straight away!
Anyway well done for making it all the way through this post!
