Hello everyone,
Have been meaning to write up my story for a while so here goes....it's a bit of a long, eventful story!
I was diagnosed at age 13 with Crohns after a few months of experiencing severe symptoms (I may have had symptoms before this but I cannot really remember as it was so long ago). Was put on steroids straight away and remained sick until I was 16. Tried various medications....mercaptopurine gave me a very bad rash all over my face, azathioprine made me vomit, did a couple of elemental diets (with ng tubes) etc. Did my gcses whilst flaring but still managed to get good grades . Things only started to changed when I started infliximab when I was 16 (in combo with methotrexate). Infliximab worked so well for me, I almost used to forget I had Crohn's disease. I almost went a bit too mad...would go out drinking with my friends and smoked for 7 years from age 15-22 (I started smoking cos I felt it helped with my stomach cramps and then just continued from there).
Towards the end of my final year at university I started to get stomach pains but thought this was just down to stress (I was working soooo hard for my degree). I got a good job and things continued to get worse. My infliximab seemed to start 'wearing off' and I became very sick before each infusion. It started that I would be ill (stomach pain, vomiting etc.) a week before my infliximab, then it became two weeks before my infusion....before long the infliximab wasn't having any effect whatsoever. My gastro knew I was ill but did nothing. He said hopefully things would settle down on their own...whatever. He didn't send me for tests for ages and when I asked him about Humira he told me it wouldn't work for me....
Anyway, long story short, EVENTUALLY I was put on Humira which worked very well but by that point it was too late. I had a massive stricture which had to be operated on. I had to have an extended right hemi-colectomy. The surgery was completely traumatising. I was in so much pain I thought I would have a heart attack after the surgery. I had an ileus and a leak at the anatomosis and they thought I would have to have more surgery to get a stoma (luckily the ileus resolved before this was necessary). The surgery ended up being open surgery as I bled extensively during the op and, therefore, my recovery period was a lot longer than expected. I was living with my boyfriend after the surgery and he found it very hard that he had to do a lot for me and didn't get much help from my parents.
A couple of months after the surgery post-traumatic stress set in and I ended up developing severe OCD- I hated the thought of germs spreading or me getting 'contaminated'. This stemmed from me not wanting to get ill again (by this point I had been badly ill for over a year). I thought if I ingested germs or got germs on my body I would get ill, the Crohn's would get worse or I would die...tbh the whole thing was so overwhelming and irrational that I'm not sure exactly what I thought would happen, I just knew I couldn't be near germs. Because there is no definitive answer for what causes Crohn's I have always been secretly worried that it may have been something I did that made me get it, I.e. something in ate, the diet I had etc. Therefore, I became very very worried about germs being on my body or getting germs in my mouth somehow. I became phobic of hospitals (because of my experience after my surgery and also because there are so many germs there!), phobic of toilets (which was totally crap given I have Crohn's and had just had half my large bowel removed meaning I needed to use the loo way more!), couldn't walk down the street normally due to dirt on the ground etc. It became very difficult once I went back to work. Using the toilets there was very difficult for me. I ended up getting a UTI which lasted for a long time due to the fact I wasn't drinking enough water (because I was scared of using the toilet). Ended up taking 7 courses of antibiotics and suddenly came down very ill with constant diarrhoea, stomach pain etc. Hd to go off work and the docs were baffled by my symptoms. All tests showed little inflammation (the Humira was working) and they had no idea why I was having symptoms. Eventually 7/8 months later, I self-diagnosed that I had small intestinal bacterial overgrowth (SIBO) after being on so many courses of antibiotics - i had asked my docs about this on numerous occasions but they just Fobbed me off. Treated the SIBO without my gastro's knowledge but by that point the docs had been messing around with my Crohn's medication and I ended up with a Crohn's flare aswell! Of course, it was a major battle to get them to change my medication to what I thought would work but eventually they let me give what I wanted a go...so now my Crohn's flare is settling and I'm on methotrexate and Humira.
Starting back to work after a year off in total. Complete disaster. I've realised from being sick for over two years that there are a lot of crap people in my life. People close to me have not been very understanding and I'm more than a bit resentful about it. I'm also resentful towards my doctors for leaving me sick for so long when, if they had have listened to me, things could have been sorted a lot quicker (and my surgery could have been avoided).
It has been great for me being able to read the forum and get advice on medication, symptoms etc. You all seem to be such a supportive community and it is good to know that a forum like this is available
Anyway, there's my story! Has been cathartic telling it and hope it wasn't too rambling!
Have been meaning to write up my story for a while so here goes....it's a bit of a long, eventful story!
I was diagnosed at age 13 with Crohns after a few months of experiencing severe symptoms (I may have had symptoms before this but I cannot really remember as it was so long ago). Was put on steroids straight away and remained sick until I was 16. Tried various medications....mercaptopurine gave me a very bad rash all over my face, azathioprine made me vomit, did a couple of elemental diets (with ng tubes) etc. Did my gcses whilst flaring but still managed to get good grades . Things only started to changed when I started infliximab when I was 16 (in combo with methotrexate). Infliximab worked so well for me, I almost used to forget I had Crohn's disease. I almost went a bit too mad...would go out drinking with my friends and smoked for 7 years from age 15-22 (I started smoking cos I felt it helped with my stomach cramps and then just continued from there).
Towards the end of my final year at university I started to get stomach pains but thought this was just down to stress (I was working soooo hard for my degree). I got a good job and things continued to get worse. My infliximab seemed to start 'wearing off' and I became very sick before each infusion. It started that I would be ill (stomach pain, vomiting etc.) a week before my infliximab, then it became two weeks before my infusion....before long the infliximab wasn't having any effect whatsoever. My gastro knew I was ill but did nothing. He said hopefully things would settle down on their own...whatever. He didn't send me for tests for ages and when I asked him about Humira he told me it wouldn't work for me....
Anyway, long story short, EVENTUALLY I was put on Humira which worked very well but by that point it was too late. I had a massive stricture which had to be operated on. I had to have an extended right hemi-colectomy. The surgery was completely traumatising. I was in so much pain I thought I would have a heart attack after the surgery. I had an ileus and a leak at the anatomosis and they thought I would have to have more surgery to get a stoma (luckily the ileus resolved before this was necessary). The surgery ended up being open surgery as I bled extensively during the op and, therefore, my recovery period was a lot longer than expected. I was living with my boyfriend after the surgery and he found it very hard that he had to do a lot for me and didn't get much help from my parents.
A couple of months after the surgery post-traumatic stress set in and I ended up developing severe OCD- I hated the thought of germs spreading or me getting 'contaminated'. This stemmed from me not wanting to get ill again (by this point I had been badly ill for over a year). I thought if I ingested germs or got germs on my body I would get ill, the Crohn's would get worse or I would die...tbh the whole thing was so overwhelming and irrational that I'm not sure exactly what I thought would happen, I just knew I couldn't be near germs. Because there is no definitive answer for what causes Crohn's I have always been secretly worried that it may have been something I did that made me get it, I.e. something in ate, the diet I had etc. Therefore, I became very very worried about germs being on my body or getting germs in my mouth somehow. I became phobic of hospitals (because of my experience after my surgery and also because there are so many germs there!), phobic of toilets (which was totally crap given I have Crohn's and had just had half my large bowel removed meaning I needed to use the loo way more!), couldn't walk down the street normally due to dirt on the ground etc. It became very difficult once I went back to work. Using the toilets there was very difficult for me. I ended up getting a UTI which lasted for a long time due to the fact I wasn't drinking enough water (because I was scared of using the toilet). Ended up taking 7 courses of antibiotics and suddenly came down very ill with constant diarrhoea, stomach pain etc. Hd to go off work and the docs were baffled by my symptoms. All tests showed little inflammation (the Humira was working) and they had no idea why I was having symptoms. Eventually 7/8 months later, I self-diagnosed that I had small intestinal bacterial overgrowth (SIBO) after being on so many courses of antibiotics - i had asked my docs about this on numerous occasions but they just Fobbed me off. Treated the SIBO without my gastro's knowledge but by that point the docs had been messing around with my Crohn's medication and I ended up with a Crohn's flare aswell! Of course, it was a major battle to get them to change my medication to what I thought would work but eventually they let me give what I wanted a go...so now my Crohn's flare is settling and I'm on methotrexate and Humira.
Starting back to work after a year off in total. Complete disaster. I've realised from being sick for over two years that there are a lot of crap people in my life. People close to me have not been very understanding and I'm more than a bit resentful about it. I'm also resentful towards my doctors for leaving me sick for so long when, if they had have listened to me, things could have been sorted a lot quicker (and my surgery could have been avoided).
It has been great for me being able to read the forum and get advice on medication, symptoms etc. You all seem to be such a supportive community and it is good to know that a forum like this is available
Anyway, there's my story! Has been cathartic telling it and hope it wasn't too rambling!