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Hello!

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Phippi
Phippi

Hi all. I'm new to the forum and in a bit of a whirlwind at the moment, so was just hoping for any advice/opinions. Sorry it's a long message! I'm a 39 year old guy from the UK who first fell ill when I was 19 to what I was told was Colitis. I had to have my Colon removed and an illeostomy for 3 years. I then had the reversal opps and have had a J Pouch since 2002. Everything had been absolutely fine since then and working great until around 2 years ago when I developed a Perianal Abscess out of the blue which then also led to a Fistula which had to be operated on. Since then I've had so many weird symptoms throughout my body: Urine burning problems which were investigated by a Urologist and they found no problem. Upper Gastro Indigestion problems which were investigated by an Endoscopy - no problem found. Strange leg burning and fatigue/Muzzy heads which were investigated with a Brain scan - no problems found. I've also had small non itchy rashes appear from time to time on my forearm, scalp itching, full body muscle aches (no swelling), mouth ulcers and constant fatigue/feeling run down. However, my bowel symptoms hadn't been too bad so I'd convinced myself I'd got something like ME as my blood tests were always coming back ok! It hadnt occured to me that id got IBD issues again as my symptoms were mainly outside of that and id been told that Colitis had been cured years ago! But in the last couple of months I started to get occasional bleeding and strange swings from diarreah to Constipation, so my pouch obviously wasnt behaving normally. Running out of specialists to see, I privately saw a gastro/bowel specialist who immediately said I looked like someone with IBD and he suspected Crohns! He ordered various tests which I've had. The bloods were ok, the small intestine MRI was ok, but my stool test showed a high inflammatory reading. I've also had the dreaded camera inserted last Wednesday and he says I've definitely got IBD again! There is inflammation in my Pouch, Perianal area and Small Bowel low down close to my pouch. He's taken biopsies and won't officially diagnose until they come back but he suspects Crohns. He's put me on Prednisolone whilst we wait and 4 days in I have to say I don't feel any better despite him saying I would!! I'm just pretty miserable not knowing what to do for the best. I've tried various diets without noticeable success and I don't even know what to eat for the best now! I've got young kids as well and a wife recovering from Breast Cancer, but I just feel so tired and run down all of the time and pretty useless! Has anybody else experienced this? Does it sound like I had Crohns all along for the last 20 years but it went into remission for years when my Colon was removed? Would Crohns cause so many random body symptoms like this? I guess I just need to get my body inflammation down (although blood tests show I'm ok!!!) Not sure if this 20mg Prednisolone is going to be the answer though, but here's hoping. Thanks for listening.

1 like, 6 replies

6 Replies

  • IndieHannah
    IndieHannah Phippi

    Posted

    Hi Phipps

    It all sounds awful what you have been going through and dealing with 

    Just a guess, but what are your B12, Ferritin, HB and Folate levels like??  Even when they're in the supposed limits but very low they can cause many of the symptoms you describe. 

    Worth finding out as if you do have Crohn's and it's affecting your terminal Ileum and Ileum it will inhibit your ability to assimilate these things......even if there is plenty in your diet. 

    It might explain why the steroids aren't making you feel any better too. 

    I hope you get some answers soon and more importantly, feel well again. 

    Take care

    Hannah

    • Phippi
      Phippi IndieHannah

      Posted

      Thanks Hannah,

      I've had B12 tested several times and Iron and Vitamin D. The GP just always says that they're 'normal. I get the impression they don't know what to say or suggest and are fed up with me going to them! I'm not sure if I've had Folate, Ferritin and HB. I'll call them tomorrow and try to request some more bloods. I had thought that it was something I was lacking but they just keep telling me everything looks normal.

      Thanks for your kind words. It's nice to speak to people who actually understand as I don't know anyone else with Crohns or Colitis.

    • IndieHannah
      IndieHannah Phippi

      Posted

      Could I suggest you request a print out of your actual blood test results so that you can see for yourself exactly what levels you have. Or apply to access all your results directly online as this is free and might be possible through your gp practice. 

      The results will show the range that the results should be within. You will see yourself if they are particularly low. 

      The doctors will only ever tell you they are normal, and almost never tell you that they are very low.  After 30 years of severe Crohn's I have learnt to be really proactive. 

      My Ferritin level is currently 28 and within range, but historically this is seriously problematic for me so am about to have an infusion because I asked. I have had several now over the years and I can't tell you how much they improve so many body and mind issues. 

      I admire you strength and persistence......now it's time to get more medical to understand that malnutrition and deficiencies come with serious side effects and knowing exactly where your levels are at will really help long term. 

      Good luck 

      Hannah

    • Phippi
      Phippi IndieHannah

      Posted

      Thanks Hannah. Really appreciate it. I'll speak to my GP surgery tomorrow to get an appointment and insist on more bloods and seeing the report. Hopefully that may make a difference!

  • Dulcie1925
    Dulcie1925 Phippi

    Posted

    It sounds like Crohns. I suffer from it and all your symptoms are classic. I went through loads of tests and it was a simple barium swallow test, followed by a pill cam that you swallow that showed the ulcers and inflammation in my small bowel. Get more advice from your Gastro, let them know the meds are not helping. So sorry for your situation and health problems for you both. I do hope you get some help. Can you go see your GP also?
    • Phippi
      Phippi Dulcie1925

      Posted

      Thanks Dulcie for your kind words, and sorry for your situation too. It's a nasty illness!

      I've been to the GP numerous times but just hit a brick wall. I end up having to suggest things to them!! Although I'll call them tomorrow to see if I can have more blood tests done to look at different nutrients again etc.

      It does make me think that I never had Colitis in the first place and that it was Crohns all along. If it is confirmed as that then it's bizarre how many body wide symptoms it can cause. I've honestly thought I've been going insane this last couple of years. Im so confused as to what to eat, cut out etc to help get me back into remission, but hopefully things will start to improve soon.

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