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Tiredness and Crohns nightmare !!!

Posted , 10 users are following.

jon1969
jon1969

I've had Crohns for 20 years I have a structure but is under control with drugs but the tiredness and fatigue is terrible specialist isn't mush help or understanding on this point how do others cope with it ? My bloods are checked regularly and are always fine. I sometimes wonder how I'm going to get thought the day at work sometimes and don't have the strength to do anything when I get it at night and I cannot wait to get to bed even if it's to watch tv I wouldn't mind but I'm no party animal has anyone got any sensible suggestions please ? I've just registered with a new dr and I'm going for the first time next week to disscus this with her Jon

1 like, 37 replies

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  • irishgal1
    irishgal1 jon1969

    Posted

    Hi Jon,

    I feel your pain. I've had Crohn's for 25 years since I was a teen and struggled with exhaustion my entire life. I used to think it was simply depletion of iron or B12, and I'd take supplements or shots, but it never got much better. I really think it's more tied to your disease as a symptom and when it waxes and wanes. The absorption pathways gets messed up due to the disease, so by fixing those, you'll absorb the nutrients required. I saw an integrative health doc who helped with some of this, but had pretty much failed everything about a year and a half ago, so went to generic antibiotics, since there's solid evidence that a mycobacteria at least plays some role in certain Crohn's cases. I was betteer in about 3-4 months - as if I had never had Crohn's. But interestingly, as my absorption pathways healed, my energy went back to normal. Exhaustion is a common complaint in Crohn's patients. No wonder - since we can't absorb common nutrients necessary for life! In any case, I'm on a mix of clarithromycin, levofloxicin and rifampin, called AMAT, which has done wonders. If you Google The Crohns Infection, you'll see all the compiled research. I know long term cases sometimes get resistant to conventional therapies, and I really hope you find something to help. I've been there too. It's completely miserable. 

    • jon1969
      jon1969 irishgal1

      Posted

      stay tuned I'm going to the Drs on Monday evening it's a practice I've just registered with so fingers X 
  • sheila51371
    sheila51371 jon1969

    Posted

    Hi jon1969. I suspect I will be the oldest one to write to you. I'm 71 and I have had Crohns since I was 21. Totally understand your tiredness and fatigue it is part of the illness. You run at about 70/75% of what a healthy person can do and that is where the problem comes from. You have to forgive yourself for not being able to do things that are expected of you, If friends say anything, because they really won't know how it feels.Repeat that you are unlucky to have such a horrible complaint and that you are personally glad they don't suffer from it. Most of the Doctors I have seen over my life will tell you that they are glad they don't suffer from it. They know how it feels and affects you. My advice is to allow yourself to slow down and try and enjoy a different interest. Sometimes it is important to try a different, less stressful hobby which totally encompasses your brain, I started to make jewellery with dichroic glass which took every available part of my brain to create these things, and when I came out of the class I felt wonderfully refreshed. So perhaps something like this would help you.   I also think it helps to find out all you can about your own complaint, so that you can answer your Doctors with a certain amount of knowledge base.  Like recently I was seeing a top-notch Consultant and she asked me why I had not agreed to a TB injection. My answer was that I considered that my Crohns disease was tubercular based which I had read some years ago, so I was not about to add more problems to what I already had. This completely floored her and she took some time explaining the current views. As I think I have said above, own your complaint which sometimes makes your life a misery and in some strange way the fatigue and tiredness will be bearable.  I know it sounds silly, but try it your complaint is the enemy and you are strong and will beat it in your own way. All of us Crohnies know how you feel. and understand how hard it is to cope. Sheila x
    • jon1969
      jon1969 sheila51371

      Posted

      Thank you for takin the time to answer with a lengthy response I'm seeing a new de tonight which I have only just registered with and I'm going to be firm that I want something done its one reason why I have changed Drs will let you all know how I get on Jon X
    • irishgal1
      irishgal1 sheila51371

      Posted

      Sheila - very interested in your comment about TB. Did the research you did talk about Crohn's being triggered by a mycobacteria called MAP? I have been investigating this heavily and the AntiMAP protocol worked amazingly well for me. It amazes me that the docs don't know about all of this. And awesome that you've fought this for 50 years! I've done half that, but it's so encouraging that there are stories like yours to give me hope that it is possible. And yes, I had to let myself off the hook sometimes when I just couldn't do things, and trry to be happy with what I had. It's a rough life sometimes, but I feel it's made me a more compassionate person who doesn't take life for granted. Still, it's a prtty high price to pay. Hugs!
    • jon1969
      jon1969 irishgal1

      Posted

      Went to the Drs tonight no recent blood test results available as yet from my previous Drs but one from 12 months ago showed my vitamin d level was low so I'm having a full set of bloods done she was very interested to hear about comments made on this forum when I mentioned it to her. She seemed to know what she was talking about when it came to crohns she did say your crohns pains can be well controlled but you can have other issues, that have nothing to do with your tummy as I well know. So I will have to go back for results and take it from there. The outcome I fear (if the blood results are all ok) is that I will have accept the tiredness and get on with it will keep you up to date if you are still interested ? Jon X 
    • Alfielefoo
      Alfielefoo jon1969

      Posted

      Im really glad she was intersted!

      Id like to hear how you get on for sure

    • jon1969
      jon1969 Alfielefoo

      Posted

      I will but will be at least a week till I see her again 👍
    • IndieHannah
      IndieHannah jon1969

      Posted

      Hi Jon

      Sounds like you made a good start with your doctor. Is she GI doc or a GP??? Also great that she listened to you. It's so important to feel that your doc is allowing you to express yourself and feel part of the treatment process.

      Sadly it's always a bit of a waiting game, but blood results are usually fairly quick. Fingers crossed any low results will be dealt with and will help you feel better. But like you said, if they're all ok then acceptance is key.

      Keep us posted

      Hannah

    • sheila51371
      sheila51371 irishgal1

      Posted

      Hi irishgal1

      So pleased to hear from you and yes, I do feel because you go through so much that you become a lot more compassionate to others. It's almost as if you are given a gift because you care. As for your question, I am not sure if she mentioned the mycobacteria MAP that you queried. She did say about the TB thing that they had found it behaved in the same way, but there was more to be learned and more to be done and it was more a case of trial and error. This came about because I developed a really bad pyoderma gangrenosum and thought I was going to lose my leg. My specialist now retired told me to go to the gastro people immediately because with Crohns for some reason it sometimes turns on itself, which was gross. They were going to put me on anti-rejection drugs but because of my age and the bad side affects, decided on a less invasive treatment. I just had antibiotics injected in a mid line every day for a fortnight. Pleased to say 16 months later and the leg has healed!! Got to wear Nora Batty stockings, but no big deal. The interesting thing is that the Dermatology people were absolutely hopeless with this. Almost as if they want to be right and that it is nothing to do with Crohns. Had to ask for a second opinion at a city near me and they were great, which actually I think was happening to Jon who has had to make his way to a different doc. You do need confidence in your Doctor/Specialist, I am sure you will agree. Love Sheila 

    • jon1969
      jon1969 IndieHannah

      Posted

      Gi or gp ? I'm going to get the blood tests done but ironically I was too tired to go in my lunch hour but I will keep you posted may get blood tests done tomorrow Jon x
    • IndieHannah
      IndieHannah jon1969

      Posted

      Sorry Jon, didn't mean to confuse.

      I meant Gastrointestinal doctor/Specialist that is hospital based or General Practitioner that practices as a local doctor.

      Hope you feel well enough to get those bloods done soon. It's a bummer being so tired all the time. I really know how it feels...... It's so much more than the word tiredness covers.

      Hannah

    • jon1969
      jon1969 IndieHannah

      Posted

      No just a gp it's time I had been there are I've just registered there tbh if the bloods come back as normal which I think they will I won't be very optimistic that anything can be done in going to try and make the effort to go tomorrow and get the bloods done Jon
    • jon1969
      jon1969 Alfielefoo

      Posted

      Hi mate not sure where we were up to ? Went to the new Drs a week or so ago and asked me to do a full set of bloods I went back yesterday  for the results and they are all normal I've also had a full medical and passed with flying colours apart from my colestaral was vey slightly raised but I've had that checked with another fasting blood test and that's all fine. The bottom line is its all part and parcel of the crohns there's no evidence that it's anything else and I'm not the first person with crohns with this complaint since talking to you I've found out about a website that has had a 4 million pound lottery funded grant to look into tiredness in crohns you can even check how bad your fatigue is Jon http://www.fatigueinibd.co.uk/

       

    • Emis_Moderator
      Emis_Moderator jon1969

      Posted

      Hi Jon,

      The website link you gave didn't seem to exist so I have edited the one above in. Let me know if this not the correct one.

      Regards,

      Alan

    • IndieHannah
      IndieHannah jon1969

      Posted

      Hi Jon

      Glad you made it back to get your bloods done. And great they came back normal.

      However, did they give you any actual numbers/levels because they can be really cagey about that, especially when the levels are low but still within their normal range. You can request a print out of your results and find out what the ranges are and see for yourself if some levels are a bit low. At least you can have a bit more control/understanding of your body and start taking supplements if need be.

      Fatigue is a nightmare with Crohn's and I wouldn't be surprised if somewhere down the line with research they tell us that some of the blood levels are set too low. That things like ferritin need to be above 50 for our body and minds to function normally.

      Anyway, good luck and keep us posted

      Hannah

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