First of all I would just like to thank this entire community for what it does as it has provided support and guidance which I could not find anywhere else. I have been lingering around the forum for a while and just feel I need to get something off my chest.
I am a 21 year old male from the UK. I have suffered with on and off stomach cramping since I was 18 years old with varying degrees of severity and longevity and I never visited the doctor for it because I am an idiot :tongue: From September - December these pains completely obliterated my appetite and I was only consuming around 1000 calories a day, resulting a much weight loss. At the beginning of February this year I visited the doctor at my university in Nottingham as I noticed what I can only describe as an elevated lower right quadrant of my abdomen. This was accompanied with very watery bowel movements and on a couple of occasions I had an intense stabbing pain which was localised to the LRQ. I went to the doctor expecting a diagnosis of appendicitis; to which he laughed off and told me to come back if things got worse.
Fast forward a month and things get worse. A large mass has developed in my LRQ and it looks like a cricket ball is sticking out of my stomach. I return to the doctors who has a feel around and orders me for an emergency CT scan. He thought it was a tumor and scared the hell out of me (cheers doc). I return to my home town in London and visit the ER for a scan which revealed a 10x9x10cm abscess around my appendix with the diagnosis being a ruptured appendix. An 18 day stay in hospital included a failed drain placement, a complicated initial surgery due to a blood clot resulting in 2 blood transfusions and a second surgery which finally placed the tube in successfully in order to drain the abscess. The abscess was successfully drained and the hole healed up, but a fistula connected to the terminal ileum then developed at the site of the surgery which currently discharges foul smelling fluid to this day (5-50ml a day, enterocutaneous fistula).
Doctor orders a colonoscopy to rule out IBD. The guy doing the procedure said my colon didn't look like crohn's, however there was scarring in my cecum (I assumed from where my appendix was that ruptured) and he took a biopsy. Biopsy result was 'Inconclusive'. Weeks past and I was dealing with the fistula with no signs of it healing on its own. Then in the middle of July I woke up one morning and my LRQ looked elevated again, not another abscess I prayed. A 3 day stay in hospital showed 7cm of my terminal ileum was inflamed. A couple of months ago would have been acceptable due to the massive abscess in that area caused by the ruptured appendix, but my doc now suspects crohn's as he would have expected the inflammation from the abscess to have settled down by now.
Fast forward to yesterday. I meet with my new gastro consultant for the first time who specialises in IBD to discuss me starting remicade. In the meeting he emails a colleague to find out some blood results for tests I had to do to see if I was suitable for remicade. She instantly mails him back and said my tuberculosis test was positive. What the fuck? He says its probably a false positive or whatever, but annoyingly this was going to delay the start of my remicade treatment as I have to do further tests :ybatty:
I don't really know what the point of this post is. I just need to communicate what is going on with me to someone else. I have had to drop out of my final year of university because of this, and living with a fistula in my abdomen is a nuisance and very embarrassing. I haven't told anyone about whats going on with me apart from my mother. It would be interesting to hear anyone else with a similar experience to mine as at the moment I feel very alone.
I thank anyone who took the time to read this, just typing these words down has already made me feel a little better.
I am a 21 year old male from the UK. I have suffered with on and off stomach cramping since I was 18 years old with varying degrees of severity and longevity and I never visited the doctor for it because I am an idiot :tongue: From September - December these pains completely obliterated my appetite and I was only consuming around 1000 calories a day, resulting a much weight loss. At the beginning of February this year I visited the doctor at my university in Nottingham as I noticed what I can only describe as an elevated lower right quadrant of my abdomen. This was accompanied with very watery bowel movements and on a couple of occasions I had an intense stabbing pain which was localised to the LRQ. I went to the doctor expecting a diagnosis of appendicitis; to which he laughed off and told me to come back if things got worse.
Fast forward a month and things get worse. A large mass has developed in my LRQ and it looks like a cricket ball is sticking out of my stomach. I return to the doctors who has a feel around and orders me for an emergency CT scan. He thought it was a tumor and scared the hell out of me (cheers doc). I return to my home town in London and visit the ER for a scan which revealed a 10x9x10cm abscess around my appendix with the diagnosis being a ruptured appendix. An 18 day stay in hospital included a failed drain placement, a complicated initial surgery due to a blood clot resulting in 2 blood transfusions and a second surgery which finally placed the tube in successfully in order to drain the abscess. The abscess was successfully drained and the hole healed up, but a fistula connected to the terminal ileum then developed at the site of the surgery which currently discharges foul smelling fluid to this day (5-50ml a day, enterocutaneous fistula).
Doctor orders a colonoscopy to rule out IBD. The guy doing the procedure said my colon didn't look like crohn's, however there was scarring in my cecum (I assumed from where my appendix was that ruptured) and he took a biopsy. Biopsy result was 'Inconclusive'. Weeks past and I was dealing with the fistula with no signs of it healing on its own. Then in the middle of July I woke up one morning and my LRQ looked elevated again, not another abscess I prayed. A 3 day stay in hospital showed 7cm of my terminal ileum was inflamed. A couple of months ago would have been acceptable due to the massive abscess in that area caused by the ruptured appendix, but my doc now suspects crohn's as he would have expected the inflammation from the abscess to have settled down by now.
Fast forward to yesterday. I meet with my new gastro consultant for the first time who specialises in IBD to discuss me starting remicade. In the meeting he emails a colleague to find out some blood results for tests I had to do to see if I was suitable for remicade. She instantly mails him back and said my tuberculosis test was positive. What the fuck? He says its probably a false positive or whatever, but annoyingly this was going to delay the start of my remicade treatment as I have to do further tests :ybatty:
I don't really know what the point of this post is. I just need to communicate what is going on with me to someone else. I have had to drop out of my final year of university because of this, and living with a fistula in my abdomen is a nuisance and very embarrassing. I haven't told anyone about whats going on with me apart from my mother. It would be interesting to hear anyone else with a similar experience to mine as at the moment I feel very alone.
I thank anyone who took the time to read this, just typing these words down has already made me feel a little better.