Crohn's &

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Hi,

I'm new to this site and to any forum/discussion on Crohn's and UC, so please excuse any ignorance and/or stupidity!

i was diagnosed with both two years ago after many years of feeling unwell.  I always assumed what I was feeling was 'normal' or at worse IBS.  I was visiting the toilet 4-5 times a day when in remission but at times of relapse (twice a year on average for about a month at a time) I was needing to go 15+ times.  After having a nightmare with being seen by doctors, back and forth with no clear diagnosis and treatment I was finally out on Pentasa, which made me quite Ill and so I was moved onto a similar drug (can't remember name as I was only on it for a day) but this did the exact same thing.  I was prescribed prednisone during my flare-up which I took and did relieve some of the symptoms but obviously not for the long term.  

Since then hen I was moved onto azathioprine at 50mg a day for a week, 100mg for the next and then. 150mg from then on.  My bloodwork all seemed ok whilst on aza but after hitting max dose I became violently ill, sickness, diarrhoea, fever, even speaking in tongues.  This only lasted a day or two and I stopped the course.  I was then moved along in a side step to mercaptopurine which after 1x50mg pill put me in hospital with acute pancreatitis.  Worst pain I have ever felt, but morphine is one hell of a drug!

i have recently left hospital but have not returned to work.  This whole ordeal is having quite the detrimental effect on my physical and mental health.  It's vexing that this period of my life where I am sorting my condition, has actually made me worse than I ever have been.  I have gone along with specialists and doctors with these treatments , despite the ridiculous list of scary side effects (i assumed that all meds can have nasty side effects and they were just covering their backs).

i have just left the specialist today and been prescribed methotrexate alongside frolic acid, but can't take them until my blood tests come back and until I have had another briefing from nurses in regards to side effects etc.

reading through these discussions it is reassuring that I'm not the only one who seems to have a negative reaction to every treatment prescribed, but it. Really does get to me.  A lot of people don't understand how nasty it can be and my work is one of those.  Though I have just started to realise that my health is more important, and stressing about this is only going to make things worse. 

I dont really ally know what to do in terms of next steps, as I have kind of gone along blindly with anything doctors have recommended, but nothing so far has worked.

ive lost 3 and a half stone since diagnosis, constantly tired and I haven't felt 'well' since I was at school.  I am now 25 and am struggling to see an end or any sort of light at the end of the tunnel.  Sorry to bang on and on, but this is the first time I've been able to out down how I'm feeling, especially with people who are in the same boat.

Any sort of reassurance or similar experiences or anything would be much appreciated.  It's great to read that I'm not alone in this!

Thanks if you have taken the time to read this essay!  

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4 Replies

  • Posted

    Sorry to hear you have problems.  Like you I tried just as many drugs but was given methotrexate and it worked

    smashing for a short while.  Unfortunately the pain of the arthitus, connected to Crohns, has made them change from Pentasa to sulfasalazine and now having problem again.

    i think it is just the nature of the disease and you have to make the most of the good days.  You can get lots of info from CCUK site.

     

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  • Posted

    So sorry to hear you have been through so much. I went through a lot of drugs but methotrexate was a godsend. I came off it when I needed surgery due to obstructions and have been reasonable since. Good luck
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  • Posted

    Hi Edward I know the feeling only to well have they put you on asacol that help to try stop flair up .I don't really know the tablet you mentioned are they for the pain I get buscopan for the cramps or mebeverine tablets

    I only know to well how sore the pain is its worse than having a baby and I got two know one will understand just how sore it can be unless they

    get it themselves. I had a really bad flair up two years ago and I lost

    6 stone in three months I was in the toilet about 30 times a day

    sometimes only passing jelly like stuff I get dihydrocodeine 30mg

    and also on morpine patches but the first two tablets I told you help just with the horrible cramps there's a crohns web site that you can go to

    and you can get a card it say crohn I need the toilet I can't wait it cost

    about £5 it help if your in a shop and suddenly need to go with this card

    the shop should allow you to use there toilet hope this help if you need to talk more just contact me I know how it feels when know one understands hope it helps susan

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  • Posted

    Hi Edward

    It sounds like you are having a very difficult time indeed.  It is perfectly normal to follow the advice and treatment offered by your doctors and specialists.  Sadly it is also normal to suffer side effects that are worse than the disease!!

    There's no simple solution. I must have been 18 when my symptoms really made themselves known. At 21 I was under investigation......by the time I was 24 I was written off by the doctors and told I was depressed and that was what was causing all the problems!!!!  During all of this I was trying to hold down a good job and make a marriage work.  It seemed rediculous to even imagine that depression was causing me to have diarrhoea at least 15 times a day!!

    Inevitably I had two very near death experiences and some lengthy hospitalization before I actually got the Crohn's diagnosis and immediately I was operated on.....placed on a tonne of different medications and sent home to get on with my life.  

    Sadly, I couldn't continue working full time.  I had to give up a career i loved and work a job that was part-time.  I became so ill on the meds that i ended up having to quit work all together!!  I became one of those people I never thought I would....UNEMPLOYED....it was awful and during all this my relationship suffered and died!!.....bear with...it does get better....eventually.

    So I'm skint, alone and very ill.......I end up seeking counselling for my broken relationship.  This leads to all sorts of self discoveries and personal challenges that showed me that you can explore other methods to treat your disease.  I'm not suggesting that there are miracle cures out there....but i am suggesting that there are many ways to skin a cat.  Over the years I have walked a quieter and quieter path.  I have placed great importance on what I put inside my body but keep it real...there will be certain foods that act as triggers to a flare and they vary from person to person.  It's also important to minimise stress in your life....but it can take time to figure out what the stresses are and how to reduce them. Its so important to stay active and exercise in some way....even if walking is all you can manage.

    I have had four surgeries in total over a twenty year period and have stayed off the meds for most of that time.....when i relapse, when the symptoms are intolerable, I use a liquid diet called Modulen IBD for a few months.....its a bit tricky, but nothing like the other options.  I have found that it rebalances me and works in a much gentler way than anything else.  My consultant will always offer the steroids and immunosuppressants first but he will always allow me to make the final choice.....as long as I am prepared to take some kind of treatment he is happy.  And the liquid diet has been my life saver!!

    My life is very different from how I imagined it would be....but I like how I've turned out and having Crohn's, although a total pain in the butt, has allowed me to develop differently.  

    Try to remember that you do have some control over your own life and especially the choices you make regarding your health.  And really, never be too proud to ask for support.  I never imagined a bit of relationship counselling could have such a profound effect and resonate for so long in my life.....but sometimes we need a little emotional support from someone that isn't connected to us, especially when the nature of our illness can be so offensive to not only ourselves, but to others too!!

    Well, if you are still awake after my long ramble, i sincerely hope things improve for you. Listen to yourself and trust that you probably do have some of the answers.

    Indie

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