Does any one else have my symptons

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hi all, hope you are all feeling well tonight.  I was diagnosed with Crohns, after 18 months of testiing, in March . After 6 weeks of azathioprine it was decided I should be given pentasa [mesalazine].  Since then. I find that I am no longer loose or have to run to the loo. My problem is the opposite. My stools are a bit hard and I always have at least a little pain which is lessened after a bowel movement..  I have sometimes had to take a dose of lactulose to induce the bowel movement which I do not like doing in case this is giving a wrong reading.

a second question I have.  Everyone talks of flare ups.  I am never totally pain free.  I don't like to moan I am grateful I am not in the pain I was in before being diagnosed but is a little pain normal for us crohnies

chris

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14 Replies

  • Posted

    Hi Chris 

    Some good points there which I am probably unable to answer other than give you my view.

    I was diagnosed about 14 months ago with Chrohn's colitis. The steroids (prednisolone) removed the acute symptoms but have struggled to find a level of meds which keeps it at bay.

    I tried Azathioprine but had to stop after 4 weeks due to side effects. Thereafter 6-MP (Mercaptopurine) kept me pain and trouble free for about  7 months but high LFT readings and pancreas indicators meant I had to discontinue.

    I had no meds for 4 weeks and now on half dose (for me) of 6-MP which is I think is resisting the full inflammation but I have some discomfort and occasional pain though bowel movements seem OK.

    Am due to see specialist after colonoscopy 2 weeks ago which was 12 months after first one when I was in agony.

    I think the aim is to be pain-free for us all but the symptoms vary from one to another.

    I wish you well Chris 

    Pete W 

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    • Posted

      Hi Pete,

      thanks for for your reply.  It does help.  I had thought with treatment life would become normal except for occasional flare ups and therefore something was wrong.. I have had three replies and now see it isn't that easy but I am not on my own and think I see which way to go.

      will keep looking on the site and hope I can help others

      thanks again good luck yourself

      chris

       

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  • Posted

    Unfortunately, most people with IBD never really get to the point of being pain free. I have been having pain ever since being diagnosed with IBD. I have been on Prednisone for 10 years now as it was the only thing that has worked for me. Sorry to sound negative, but it is the truth. You have to find a medication that works for you and stick with it. Things do improve, but you will have to work with your doctor to manage the pain. I wish you well.
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    • Posted

      Hi Craig

      thanks for the reply amazed how much it helped.  Not entirely pain free but today has been much better and thanks to the replies I have had feel I can progress.

      many thanks 

      chris

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  • Posted

    I was diagnosed with ulcerative colitus 5 years ago. Was put on Pentasa and prednisone. My consultant didn't want me on prednisone for long.  He then replaced that with azathioprine and pentasa.  I was on azathioprine for 4 years and was taken off this last January.  Still taking Pentasa.  I am touching wood as I type this as I have been fine.  Although still getting pain I am able to go out and not worry so much about the locations of toilets !!!!  Everybody is so very different and my meds are not the same as my brother who also has the same illness.  All I would say is monitor what you are eating.  I have found that I cannot eat grapes anymore and a lot of onions have an effect on me. Good luck and I hope you manage to  get more good days than bad. 
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    • Posted

      Hi Maureen ,

      thanks for for such a quick reply.  I had three replies and feel much better today.  Not sure why I today is better can only think it is because of the forum. I had been told everyone is different but hearing it and understanding it can be different can be quite different.  I know more fruit. Would be good for me but I look at it and am horrified at the sight.  Strange isn't it.  Grapes are the only fruit I can face.  I did meet a chap who told me that he can eat grapes without a problem as long as they are the seedless type.  Have you tried the seedless?  If you do try them and they give you pain I oppologise now, sorry sorry.  I can eat tomatoes without a problem. Like you say we need to keep a strict diary. Keep on viewing the forum. Saying what we are expericing no matter how daft we might feel.

      bye for now

      chris

       

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    • Posted

      I believe you feel better because you have realised you are not alone with the suffering.  Its an illness people don't like talking about or grumbling about like flu etc.  Trust me, you are not alone and in the last 5 years doctors have become more aware of these illnesses.  My brother is being closely monitored as his consultant is doing a thesis etc on the illness.  It is also surprising how many stars on TV have announced they are relations suffer.  The more we get this illness out there, the more, hopefully, things will be done for us. So glad you are feeling better today, stay positive !!!!!!!!!!
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  • Posted

    Hi, I have had crohns for 8 years. I have first mild flare up of vulva. It, depends where the crohns is in the body you get pain or discomfort. 
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    • Posted

      Hi Steph,  sorry I am late replying somehow I missed your email. You do make sense of things.  I now understand why there is always at least a little pain at all times.

      to day is looking good.  Hope you are having a good day

      chris

       

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  • Posted

    Hi chrisor,

    I got diagnosed with crohns at the age of 8, I had a severe flare the pain was unimaginable, I was always tired, I lost at least 10 pounds, and I was always on the toilet. That particular flare last a few months, fortunately I got a intelligent doctor who specializes in Crohn's disease. I got put on different meds until I found pentasa. I didn't get a flare until 2 years later and then another one 2 years after that. They were both moderate but not as bad as the 1st. I'm now 15 and I still take pentasa (a higher dosage now) I had been in remission for years until about a week ago. My advice to you would be to stay away from acidic foods ( they can cause a flare). Find a very good doctor that specializes in crohns. If u have any more questions u can ask mesmile

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    • Posted

      Hi Jesse,

      thanks for the email and you give me hope.  I had wondered what was a reasonable gap between flare ups could be so now I have a. Bench mark of two years. I am a bit funny in that I do not suffer from fatigue but I have lost 3 stone in 18 months.  Not to worry as I love being slim just need to stop losing now.  I do not have much of an apitite and I am practicing drinking boiled water

      bye for now hope you have had a good day

      chris

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  • Posted

    I can only describe mine as feeling sore inside,

    I am suffering exactly the same with constipation and my doctor has put me on movicol. Daily to stop the constipation. It helps.

    Compared to before the treatment (humira injections) I was having diarrhoea 45 times a day.

    Hope the sort you out. X

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  • Posted

    Hi Chrisor

    I've had crohns for 13 years now and I've always been constantly struggling with it. It's basically been a 13 year flare up haha. I suffered with diarrhea badly for years and then it turned into pain with times of extreme pain. I'm not on medication any more, I was on one of the steroids but it gave me pancreatis so now my only options are biologicals or surgery. I just do the best I can with diet and stress levels (I work part time and have totally had to change outlook on life as emotions really do affect crohns)

    These last 2 weeks though I've made a break through (touch wood ) I've given up crisps and only eat snack a jacks and velvet crunch as a snack and I think I'm going in remission for the first time ever!! One of my symptoms is a hot stomach and sore to touch ribs,and now my stomach is cold and ribs feel normal.

    Don't know what to do with myself now haha. So maybe something like this could happen to you. Obviously i don't eat dairy caffeine alcohol fruit acidic pop nuts spice anyway but always thought crisps were a safe food, how wrong I was.

    Sorry long winded but still quite excited

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    • Posted

      Hi nicola

      there is hope for us both.  Three weeks ago I was forcing myself to eat. I booked a cruise holiday wondering if I would be able to eat at all,  instead the first day I ate like a pig and only had a little pain then found I had left my tablets at home.  Wonder of wonders dispite husband being taken ill and being hospitalised in Sicily I am in no pain what's so ever.  I had been troubled with constipation but there is no problem now.  It is very stressful not speaking the language.  Taxi taking me to the wrong hospital wondering if the insurance will payout lots of little problems etc.  But I am feeling on top of the world in myself.  I think it might be that stress is the cure for crohns ha ha.  What do you think. Need to say that husband is doing well and we may fly home in a few days. Carry on with what you are doing if it seems to work all I do is make sure I drink lots of boiled water and I feel great

      chris

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