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side effects of crohns

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decndor
decndor

Hi Everbody, Hope you are all feel resonably well. I have been on this forum for around two years now and most cases I have been giving advice to patients. This time I am seeking advice. As I have mentioned several times in discussions I have suffered from for 53 yrs this year and throughout that period I have seven operations three of them directly related to the crohns and a number of weeks in hospital.   Although at the moment my bowels are not too bad concidering, it is the fatigue and painfull joints that are giving me most problems. As I am writing these commments the fatigue has over the last couple of weeks increased to a new level.

​and I am also experiencing discomfort in my lower back which then radiated up my rib cage. I have been to my doctor recently and we have both agreed that I go back on the citalopram and see if that helps this grieves me since I only weened myself off this last year but I am desperate at the moment for some relief.  The question that I wish to ask the forum, especially people who like myself have sufferd from crohns for a long time.

​Has anyone found any medication that can ease the chronic fatigue. Also is there any medication that I can use for painfull joints since we cannot take anti inflammatorys. Thank you. DecnDor

0 likes, 8 replies

8 Replies

  • Carolla
    Carolla decndor

    Posted

    Hi, sorry, can't suggest anything for the fatigue.  I feel that it's robbed me of so much in life.  I'm having trouble with my fingers, they're getting quite twisted and so painful sometimes I can't hold a knife, then the next day I'm fine, my thumbs hurt too, and quite often other bits join in.  What I do take and have taken for nearly 30 years off and on is cats claw.  I usually stock up with a three month supply, then when that runs out wait until I'm having probs.  It's a South American herb, anti inflammatory, good for digestion, immune boosting, helps with high blood pressure etc.  Be careful, it may interact with other things, don't take it if you're pregnant or have Parkinson's.  I always feel it's doing nothing, but I've had a five month gap and now, a month of taking it and I've still a bit of pain in my hands, but not so bad.  But we have had warmer weather, although the weather doesn't seem to affect my hands.  It's just a suggestion and it's not a common herbal item.  When I first took it I had to order by post, now Holland and Barrett stock it.  Look on the bright side, at least it might stop you getting a cold.  The GP I had years ago was fine about it, as he said he couldn't cure me and if it helped a little, fine.  I've never discussed it with my present GP so I don't know what he thinks.

    • decndor
      decndor Carolla

      Posted

      Hi, Thanks very much for repyling to my request for advice, it is appreciated. I will cetainly look in to that "cats claw" I have heard of it. As I say I can normally cope with it but over the last couple of weeks it has moved up a couple of gears, All I want to do is sleep, but I don't know if your the same when I wake up I feel much worse. Take care.

    • decndor
      decndor Carolla

      Posted

      Hi, Thanks for getting back to me, I have been on B12 injection for around 17 yrs and like your self I have them every three months, but where a lot of people say that they help them and make them feel bettter unfortunately I have felt no benifit what so ever.  The fatigue was one of the things I started experiencing just before I was diagnosed with crohns 53 yrs ago and I have suffered with it ever since. Like your self again I do a lot of sleeping. I usually have a 3 to 4 hr sleep in an afternoon and then I generally drop off to sleep after my tea and I still sleep through when I go to bed. My problem is that instead of feeling refreshed after my sleeping sesions I feel worse when I wake which does not help. You take care
  • sheila51371
    sheila51371 decndor

    Posted

    Hi DecnDor

    I am sorry you are having a bad time with pain recently and wanted to pass on what has helped me, I have had Crohns since I was 21 and I am now nearly 73. I suspect that like me you were mostly treated with steroids in the old days, which I think is the reason for your bones and joints to be aching now. With this there is also the overwhelming fatigue, which is really bad. Friends  ytell me why don't you do this or that,but they don't know what its like, if they did they could sympathise, but intruth they just have no idea.  You will know when I say that they got very worried about my depressed mental state. Psin is so draining. Anyway they became really concerned and prescribed morphine patches. I started with 5mg ones and then 3 years later I am now on 10 mg ones. One patch a week, They recomend you put it in your neck or collarbone area, I have found it more beneficial to put it near to your spine, where the pain is. I top this with Cocodamol 6 or 8 a day. I have also had infections in  my bile duct and waterworks, so may be this is making things worse and giving you bad pain.

    Best wishes

    Sheila 51371

    • decndor
      decndor sheila51371

      Posted

      Hi, Thanks for replying to my request for advice, I appreciate it. It looks like you have had the crohns roughly for the same amount of time as me. I was diagnosed when I was 25 and I am now 78. I was ionly put on steriods for a short time so I doubt that this has caused my joint pain. I find that the only pain killer that I can cope with is paracetamol and even that can irritate my stomach. I have had my gallbladder removed and my last operation was to remove my left kidney since they found a tumor on it which at the time they said was 85% cancer so they suggested that I had it removed. It took six weeks for the biopsy results to come back, luckly it turned out to be benign tumor which meant that I did not need it removing.

      ​Up until recently I have managed to cope with these problems but iover the last couple weeks the fatigue has moved up a coupl;e of gears.  All I want to do is sleep. but I dont know if your the same when I wake I feel much worse.instead of feeling refreshed.  I was on citalopram for some time until I weened myself off them last year, but because of the recent situation my doctor and myself have agreed to to give these a try again. I dont feel depressed I just feel ill. But this is how I felt last time when the doctor put me on them, and all though I was reluctant at the time they did help resolve my problems, I only hope they do the same this time. The only problem is that it normally takes six weeks before you feel the benifit.  Once again thanks for yourv input. You take care. 

    • sheila51371
      sheila51371 decndor

      Posted

      Hi again,

      I feel the same about going back on to Steroids as you do for the Citalopram, but like you I did ween myself off and I really think that the good part is that you have done this in the past, so you can do it again. I like you thought that by our age the Crohns would have declined, but no such luck. However, I do remember a surgeon telling me in the early days that I would be lucky to gete to 60, well I have, and you have as well, so we have p;roved them wrong. Just that in my mind it has many different faces, and at the moment you are facing the terrible fatigue. I have to say, although not much help to you I know that I amk feeling low, because of the pain from my joints, and get annoyed that I can't do what I have always been able to do. Do you have B12 injections? I have them every 2 months now and I really do feel better within a couple of hours when this goes in.  I have seen your answers to people in the forum and I admire the way you deal with things. Sometimes when they write to say they don't know if they have Crohns or IBD. I have to say althugh normally quite easy going, want to say, believe me you would know if you have it. It's a very nasty complaint with many different sides to it.  Such is life I suppose. Anyway, I do hope you begin to feel slightly better once you take the tablets and more able to cope. I saw from your reply that you were not able to take anything stronger than paracetomol. Do you know the most marvelous thing about the Co-codamol which I suppose is down to the Codeine, means that I have some control over my colostomy. A really good plus.

      My good wishes and sincere hope that you will begin to feel better soon.

      Sheila 51371.   

    • decndor
      decndor sheila51371

      Posted

      Thanks for getting back to me.  I to have b12 injections, but every three months, but unlike your self I do not experience any benifits, In actual fact my next one is due this month.   I attend my local crohns and colitis society meetings every month they are a great crowd and you sometimes get more information from these meetings than when you go to your doctors.  I think when I tell some of the newly diagnosed at the meeting that I have had it for 53 yrs they can see some light at the end of that long tunnel..  Take care and I hope that you have more good days than bad
    • Carolla
      Carolla decndor

      Posted

      Good morning, I hope it is a bit better one for you.  I'm always tired, just the intensity varies.  When I was working I would have a nap in my car at lunchtime, okay, but embarrassing when my colleague had to come out and wake me up.  We attend vintage rallies at the weekends as exhibitors, and again I get comfy and sleep.  I have B12 every three months and it's not always the same.  I have asked has the surgery changed to a cheaper kind, but the nurse said she never looked at the box!  That might be why it doesn't always help.  Have you looked up cats claw yet?  When I first took it it was supposed to help with Crohn's, but that's wrong.  I do think it helped me fight off germs, being in a busy work place I was no different to anyone else with the amount of bugs I caught, which was surprising.

       

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