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The Diagnosis

Hello all,

Firstly I am a 23 year old male from Ireland. I was diagnosed in September 2012 with Crohns disease. I said I would join here to share my story and to hopefully get some help with the disease:)

Before I was diagnosed I was a typical lad, I loved having a few beers with friends and I never said no to a party. Even before I was diagnosed with Crohn's disease I would always have diarrhea after a night of alcohol since I was about 18. I always wondered what was wrong with me, if I was allergic to alcohol or something else. I never paid to much attention to it as it would only ever last the next day and then I was fine again. I can recall mentioning this problem to my doctor since the age of 18 but he always shrugged it off as an ulcer and sent me on my way.

So as per usual I sat down to my dinner after a night out last September and all of a sudden I felt the worst pain I have ever felt. I've broken quite a few bones so I know what pain is lol. I was bent over in agony so I immediately went to an out of hours doctor and again I was prescribed some ulcer medication and sent on my way. I was told that if it got any worse to go to the hospital.

I went home and the pain would stop for a while and all of a sudden it was back. It continued for a few days so I went to the hospital. I was sent for an xray and had some bloods done and the doctor told me I was constipated and sent me home with a prescription for a laxative. I tried this for a few days and the pain was worse than ever, I could not eat anything or have any bowel movements. I also could not sleep for more than three hours at a time because when the pain would come on it was so bad it would wake me from my sleep. I also began to notice a firm lump appear over my bellybutton so I returned to the hospital.

Again I was told it was constipation etc, and that the doctor could not feel any lump. This continued for 5 weeks. I made six visits to the hospital along with many trips to my gp with no success. All I wanted to do at this stage was die the pain was so bad. Eventually after yet another visit to my gp the lump was discovered by a doctor filling in for mine who was out that day. She said she could clearly feel I had a large inflammatory mass over my belly button and gave me a letter to go to the emergency room straight way. I was delighted, finally somebody had agreed that there was something wrong with me.

As per usual I was sent on my way from the hospital, again being told I was constipated but I was given a letter to come back for an endoscopy. I had that done a couple of days later and it showed up I had a little inflammation on my stomach lining. I was prescribed some protium and they told me I would be fine in a few days.

I gave it yet another week and no improvement. I was in unbearable pain all the time. I could not eat, I could not sleep. I was also 40 lbs lighter in just five weeks. I had to give it one last try so again I went to the hospital. Again there was some blood tests done and an x-ray. I remember being on a trolley in the a&e and the doctor saying to me that ' I am just waiting for your bloods to come back and then you can go home ' I was at my witts end. How could they not see there was something wrong with me?

The bloods came back and it showed up I had an infection. I was actually relieved that they were telling me there was something wrong. All I kept thinking was ' Now they can finally fix me'. Immediately some surgical doctors came down from upstairs and they knew straight away that something was wrong. They said my appendix had burst, or there was a problem with my bowel. They hooked up an iv straight away with some antibiotics it them and everything was done in a rushed manner. It was now the realisation had sank in that I was pretty sick. I remember asking the doctor should I be worried and she replied to leave the worrying to them. I was glad to hear that but at the same time I could not help but be afraid of what was wrong with me.

I was moved to a surgical ward and had some more horrible tests done. That night was the first time I had slept for more than three hours without waking up. It felt great to wake up feeling somewhat fresh in the midst of what was going on. The next day I had a C.T scan and a new doctor came in and sat on the bed and told me I had some very significant inflammation of the small intestine. She said she would probably need to operate as it was severe. She said she would put me on steroids for a few days to see how it worked.

It worked almost straight away. After a few days my appetite had come back and I even found myself sneaking down to a vending machine for some chocolate lol. It was then I knew I was getting better. The pain had gone and I was sleeping too. I signed myself out of hospital as I hated the place and took home a prescriotion with me for prednisolone starting on 45mg a day and reducing my 5mg each week.

In February of this year I was still on the steroids. I had become dependant on them. I had also taking a likeness to valium and xanex and was drinking about 3 times a week to kelp cope with the disease. Not being able to live the life I used to have had made me depressed but I am the kind of a man that wouldn't talk about it with anybody.

After somewhat of a mental breakdown I had to change my ways. I was gradually weaned off the steroids( which was horrible). I quit drinking for good and now I also do not take any more valium or xanex. I was put on humira to treat the disease but cannot feel any benefit from it so far.

I moved to the country side on my own to be away from all the people I knew that were the usual influence to go drinking. I am still finding it hard to cope with the symptoms of the disease. I have maybe four or five bowel movements per day but its the sudden urgency to have them that gets me. I don't leave the house too much as I don't know when the urge is going to come on but I have accepted the disease now which makes things easier and just try to live my life around it.

So that's my story, and even a little bit about my addiction lol. I don't like talking about the disease as its very embarrassing.That's why I joined here, knowing that other sufferers would understand. I now just keep to myself and hope that eventually they can cure it. I am due to see the specialist again in January but I am adamant I will not have surgery. Hopefully someday the disease will go into remission but for now I plan just to cope with the way it is.

Thanks for reading :)
 
Thanks for the honesty Joe.

Hope you find what you need on here and the support to continue what is now working for you.

Think you will find a LOT of similar stories here.
 
Joe welcome and sorry you have been through all this . It is a all too common story of hospitals and doctors . You should still keep in contact with your doctor just so you a re being monitored from time to time . it certainly is a difficult disease to come to terms with but maybe if you start by keeping a food diary . try to eliminate or reduce foods that you know have a bad effect on you .
I have found if you can it is important to keep up level of fitness. I always feel more able to cope with the bad days when im cycling or doing some sort of training . I suppose its your way of making a positive step out of this . I know how debilitating this can be and you certainly will find plenty of others on this forum that are going through the same .
its good sometimes to just come on here and speak your mind or ask a question when you need advice.
Hope you feel better .
 
Thanks for the honesty Joe.

Hope you find what you need on here and the support to continue what is now working for you.

Think you will find a LOT of similar stories here.
From what I've read so far it looks a good forum with nice people. Thanks for the response. I'm sure I will find some answers here
 
Joe welcome and sorry you have been through all this . It is a all too common story of hospitals and doctors . You should still keep in contact with your doctor just so you a re being monitored from time to time . it certainly is a difficult disease to come to terms with but maybe if you start by keeping a food diary . try to eliminate or reduce foods that you know have a bad effect on you .
I have found if you can it is important to keep up level of fitness. I always feel more able to cope with the bad days when im cycling or doing some sort of training . I suppose its your way of making a positive step out of this . I know how debilitating this can be and you certainly will find plenty of others on this forum that are going through the same .
its good sometimes to just come on here and speak your mind or ask a question when you need advice.
Hope you feel better .
I have started running and other excersise in the last few weeks. I gained about 45 lbs from the six months on steroids so just trying to shift it so I can go back playing some football if I'm well enough. My own G.I said that food I eat would have no influence on it at all. She just said to cut back on greasy foods etc. although I have seen on the Internet that a patient of hers died from something so i am not sure what to believe.

Thanks for the reply Peter. Being positive through it all I found has been the biggest help in coping with it .
 
Hi Joe!

Welcome to your new home from home :D

Thank you for sharing your story with us. You will find a lot of people here that know exactly what you are talking about. And there's no need to be embarrassed about it with us, we are all the same!

Anytime you need to talk, just give us a shout :)

K
 
Hi Joe!

Welcome to your new home from home :D

Thank you for sharing your story with us. You will find a lot of people here that know exactly what you are talking about. And there's no need to be embarrassed about it with us, we are all the same!

Anytime you need to talk, just give us a shout :)

K
Lol thank you. It is easier to tell people on here about the problems because people that don't have it just look at you as disgusting. I feel at home here
 
Welcome to t forum its brillaint here , I'm with t others as hard as it is excerise is brillaint with stress and tummy stuff , helps a little with feeling down xx like t others say chat anytime xhugs
 
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