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My Story

Hi everyone and since having browsed this forum loads of times previous to my diagnosis of Crohn's disease, I've decided to register and share with you all my story so far.

My name is John and I'm 20 from the UK. When I was growing up I had a relatively normal life; went out with friends, active with sports and could eat almost anything and not have to worry about the side effects.

When I was around 11 or 12 I'd start to suffer from really bad pains in my stomach which were so bad at times they had me crippled over in pain and unable to get myself out of it until the pain subsided. This went on for a brief period of time, every 6 months I'd get this unbelievable burst of pain which forced me to need the toilet. Following up with an appointment to my GP and they were merely diagnosed as being constipation and so I adjusted my diet so I wouldn't get "constipated" anymore.

Figuring the problem was gone I returned to my normal lifestyle and didn't have any problems for about 4 years and that's when the bleeding started. Occasionally I'd get so backed up that a trip to the hospital was necessary to exile the blockage and that wasn't pleasant at all. Started off with spots that I didn't quite understand so I preferred to ignore it rather than address it, it was completely random too. It didn't matter what foods or drinks I had the bleeding came and went as it pleased until I was 18 then I started having severe bleeding & mucus in my poo that heavily concerned me. Another emergency trip to the hospital and several examinations later lead them to believe that I had Haemorrhoids; by this point my dignity was well and truly gone.

Given treatment for my apparent "haemorrhoids" consisted of anusol cream which didn't do much as my bowel movements have always been unpredictable, however the GP thought this was the way forward.

Finally after a year or so I had a little normality restored and I could work as freely as I did and not have to worry about my issues, that was until I developed anxiety. My anxiety became so severe that it made my job impossible to do, infact I couldn't get on a bus without worrying about whether or not I could make it to the toilet in time and this has hindered me more than anything in the past. It would be so bad to the point that I didn't want to leave my house in fear of not knowing where the toilets are and if I could get there on time, I can't stress how much this had made an impact on my life.

More trips to my GP got me nowhere still giving me all the typical excuses; upset stomach, change your diet, eat more fibre, eat more protein, haemorrhoids, IBS... bla bla bla. Just no ending to this horrible situation.

I eventually just got my head down and got on with it until I discovered a small lump beside my bum, basically I thought it was a spot and would go away by itself, how wrong was I. Fast forward 4 days onto the Friday and I couldn't even sit down it became that inflamed and it was so painful to touch that even wiping my bum after the toilet was a challenge so, you guessed it another trip to my GP! Without any hesitation he told me that I had a perianal abscess and was given antibiotic cream and told that it would drain on its own. Eventually it did and it was one of the best feelings I've ever had, touch wood I don't go through that again.

Fast forward 4 months with my abscess gone everything was back to, apparent normal.. normal enough. Went to bed one night and then woke to have a severe itch on my behind, soon enough I had a look and seen that on one half of my bum it was double the size, bright red and had small sores all over it.. Will it ever just stop I asked myself. Trip to my incredibly reliable GP in the morning.. revealed that it was a skin infection in which I was prescribed anti-histamines and told that it would go away on its own. This was the first time that Crohn's disease was mentioned to me as he said its a possible side effect to having it. Members of my family approx 3 all have had ulcerative colitis which lead him to believe that I could have something along those lines but it was too early to tell. I finished my prescription and my rash was gone, so again back to normality for a while.

To the end of last year I went back to my GP as I was taking too much time off work and as getting in trouble for not attending due to the fact I couldn't; I was scared to do anything, my anxiety was worsening, I developed pains all over my abdominal region and was feeling generally unwell. This time my normal GP was on holiday so I got a stand in doctor to see to me. Instantly he looked over my notes and realised I had been coming to the practice for over a period of 3 years excluding the 4 I had no problems, with bowel problems or related and he referred me to the Gastroenterology specialists at one of the hospitals in my city which scared me a little bit but also gave me relief that I didn't have to wait around for another problem to arise and it was going to be dealt with.

On the day of the visit to the hospital I had never felt more nervous especially since it was a good two bus rides there and back I feared about the whole anxiety thing but lucky enough I didn't once think of it on my way there or back. When I arrived, I arrived a bit early better off being early than late I presumed and I was taken within half an hour. The specialist was really good in explaining everything to me and once I told him my story like I have here he then proceeded to tell me that to be 110% sure what we're dealing with ill need a colonoscopy to determine the proper diagnosis, finally there was no excuses.

I read about the diagnostic procedure and having learned about some folks views on here about there own personal colonoscopy, I chose to have sedation and a painkiller. Having it done wasn't the worse part, the worse part was probably waiting to have it done but none the less I was soon taken into the room accompanied by the nurses and told about what was going to happen, they put the cannula into my arm (not a big fan of things in my arm) and then applied an oxygen mask to my face, proceeded to inject the drugs and even though I was sedated I could feel everything, it wasn't that bad just on the odd occasion severe cramping would make me feel unpleasant. About half way through the specialist stopped and almost held his breath I wondered what was going on so I squinted to the screen and at this point I was in a lot of pain, I saw what appeared to be bleeding and ulcers on my bowel.. he instantly told me that I needed to be admitted and most likely for surgery. I didn't know what to think, I knew there was something wrong with me but I didn't know it was that bad.

Admitted into hospital that day and for a week in the long run, I had blood tests, several injections in my stomach to prevent blood clots and was put on a polymeric diet which was absolutely horrible. To go from eating fine to not eating at all and to make it worse the dietitian didn't balance out my ensure drinks so I wasn't drinking enough, I went from 65kg to 62.2 in a matter of days. Having doctors coming around to see me constantly and telling me all the different things that could happen was I'll admit a bit scary but I just wanted it all over with so I was down for whatever would help me return to a normal life.

I got out for the weekend which was good but told to be straight back on Monday and not to eat anything so the weekend came and went. Scheduled in for an MRI scan on Tuesday was something I didn't look forward to, skip to Tuesday. I was taken down and given Klean-prep in which I was told to drink ALL of it so it helped show my bowel clearer on the scan, the taste was horrible and I mean horrible. It was that bad I couldn't finish it so the nurse just told me to proceed anyway, half an hour past and the nurse came back in. Told me the scans weren't good enough so had to inject a liquid into my arm so that it would show up, I had the cannula taken out on Friday so I had another one put in and injected with this liquid.. I almost threw up in the machine it was just a horrible experience altogether. With that done they let me go home and prescribed me with Budesonide which I have to take 3 a day and then 2 when I've taken them for 4 weeks or so until I'm completely off them.

So today, I feel a bit better.. out of hospital for about 2 weeks and signed off work until further notice at least until I can get my anxiety under control which is my major problem now.. I don't know what to do about it but counselling had been mentioned and I'm willing to try anything.

So that's pretty much the stage I'm up to and I don't know what the future holds but one thing I'm certain of is that I'm not going to let it get the better of me.

Thanks for reading,
John.
 
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Hi John. Welcome to the forum. I'm sorry you've had such a hard time of it. Sometimes getting a diagnosis is half the battle, at least you have that now and are getting treated.
For a while, I wore adult diapers when I went out, so that I didn't have to worry about having an accident. That may help with your anxiety until your condition improves. Many people carry wet wipes and changes of clothes, so that you can go on with your life and clean up if accidents happen. Counseling is probably a good idea too. I've tried to minimize the stress in my life as much as possible.
Hang in there, there's a light at the end of the tunnel, it gets better.
 
Hi John

Sorry you had to go through so much before being diagnosed. It is easier being a woman, I just wear sanitary towels, and have done for the last 20 years. I am also sorry you had a bad time with tests. My worst memory is a barium enema where I had to be forcibly restrained as I tried to get off the table during the procedure. The steroids seem to be helping which is great. Give it time, it will get better. Being diagnosed is the biggest hurdle. I would recommend counselling, I refused when I was first diagnosed and have always regretted it. Crohns sucks, but you can and will live a 'normal' life, or at least a new normal life.
 
Thanks for your replies, really I'm just glad I'm not alone. I just wish I had never came down this road in the first place. It does get me down I'm not going to lie, I just wish this anxiety would go and I'd be able to get on with my life without any trouble as I've grown a custom to living with the pain.
 

nogutsnoglory

Moderator
It's not a fun to road to travel at all. It depresses me all the time but I try to think of the good. The amazing friends and support I have made along the way and the compassion and understanding for disease and disability.
 
It's not a fun to road to travel at all. It depresses me all the time but I try to think of the good. The amazing friends and support I have made along the way and the compassion and understanding for disease and disability.
Couldn't agree with this post anymore got it in a nutshell.
 
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