UC and Nerve Damage

Intro:

60 year old woman diagnosed with mild to moderate UC in October 2015. Up until a year before that I was in very good health, very active, a keen distance walker and swimmer. A minor accident causing a hip injury in November 2014 then diagnosed with C6/7 spinal compression mid 2015. Naproxen for the hip pain and amitriptyline for neck pain. No longer in pain from either of those but wondering if these drugs may have triggered UC.

Some more:
Up until a year ago I would say that I have always been strong and healthy. I eat healthily – a lifelong vegetarian, take lots of exercise, drink alcohol only very occasionally and have never smoked. I used to walk 10 miles three times a week, lead walks for a local rambling group and swam 2K every day. I turned 60 last year and feels like my body had been complaining ever since.
COLITIS SYMPTOMS:
Currently free of diarrhea and bleeding but consultant tells me the inflammation is probably still present evidenced by passing mucus some days.

Joy’s Story:

I was diagnosed with mild to moderate UC in October 2015 after experiencing diarrhea and bleeding for a month so I am still on a steep learning curve about the disease and reading as much as I can about it.

I was treated with 30mg pd Prednisolone and 4G pd Pentasa Mesalazine. Within a month the diarrhea and bleeding were under control and I was tapered off the steroids ending just before Christmas. I am still taking the Pentasa.

In mid-December I developed a very bad cold and cough. I rarely get colds, maybe one every few years and then they only last 3-4 days with no lingering effects. This was the worst I have ever had, a painful wet cough which lasted two weeks. Ever since then I have felt utterly exhausted and I am experiencing dizzy spells, aching bones and joints, numbness and tingling in hands and feet, blurred vision and generally feeling foggy and weepy. Hard to know if this is UC related or some post-viral malaise. I have been to see my GP, had bloods taken and awaiting results.

And now, today. I have started to experience what I can only describe as soreness and burning pains in the breast and shoulder areas both sides and traveling down towards my elbows. It feels like nerve pain. I’ve been searching online and can find one or two old medical research articles relating to IBD and nerve damage but l’ve struggled to find any forum posts about people’s experiences with symptoms like this so wondering if anyone here can throw light on this.

I’m struggling not to feel like a hypochondriac with all this going on but my body really does feel as though it’s in free-fall and dreading what other symptom is going to emerge next.

I realise that it’s very early days for me as my diagnosis was recent but I am worrying that the debilitating effects of Ulcerative Colitis are going to dominate my life.

I live alone and don’t have any surviving family so not having support is another issue. I have friends but they don’t seem to understand how serious this condition is or how ill it is making me feel even though the immediate symptoms of diarrhea and bleeding have subsided. So many people seem to think it’s the same as IBS and almost everyone seems to have that. My gastro consultant is pleasant but only seems concerned about the colonic aspects of the disease. All the other symptoms are given over to the GP to address and they have little time. So, I think what most concerns me is lack of support regarding related conditions.

Current Treatment:

I am eating a low fibre diet on the advice of my consultant. Not liking this much as I am used to exactly the opposite, a diet rich in fruit and vegetables. Wondering if this poor diet is contributing to my tiredness. I take a general multi-vit with iron but that’s all.

written by Job B

submitted in the colitis venting area




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damage, nerve

18 Responses to UC and Nerve Damage

  1. Graham from England
    Graham February 13, 2016 at 2:41 pm #

    Hello Joy,

    Neurological symptoms with IBD, definitely.

    Alarm bells were going off while I read your post, as you probably know, intestinal inflammation will limit your ability to absorb essential nutrients and vitamins. I’m not sure where you live but the NHS here in the UK are rarely interested in any deficiencies that could be related to IBD, even when you present with serious symptoms. It is easier for them to give you a new disorder which has unexplained etiology, “next”!

    Bleeding will deplete your blood stores and the quality of related nutrients circulating your body. You have been a long time vegetarian so less than optimum B vitamins could cause or exacerbate any neurological symptoms. Mesalazine can limit the absorption of folate, b12 and folate are essential for a healthy nervous system. Low b12 can also make IBD worse. As you already have spinal cord damage it is vital that you “feed it”.

    It is good that you are taking iron, hopefully with vitamin c for better absorption. Beginning suitable vitamin b12, iron and folic acid has reduced my neurological symptoms by half. It is almost impossible to have too much b12, 1000 daily units is good and sublingual liquid or tablet under the tongue is absorbed better than hoping your intestines will do this. Methycobalmin b12 is more readily available to the body.

    I had spinal cord inflammation following 6 months of UC bleeding and shortly after taking Mesalazine. I have numbness, tingling, dizziness, exhaustion, breathlessness, irritability to name a few. Oral B complex improved things but after 3 years I became more like my old self after seriously addressing this problem.

    I will post a link in the next message which has good information about b12 deficiency.

    Best wishes,

    Graham

  2. Bev February 13, 2016 at 4:17 pm #

    Wow…what Graham said!

    He is very experienced and also very learned in UC and all that can come with it.

    Great help Graham!

    Some of us (you) are better than the overworked doctors are at figuring things out.

    :)

  3. Graham from England
    Graham February 13, 2016 at 4:51 pm #

    Hey Bev,

    Hope you are well?

    Thanks as always, you know how it is, you can speak with some authority on such things once you have the T shirt. Hopefully it helps people know which rocks to look under and save valuable time.

    Joy, if tested, your b12 and folate may come back normal but false negatives are common. New guidelines say that b12 injections should be administered immediately if neurological symptoms are present, something my neurologist is ignoring. Apparently there is no relationship between b12 defficency and spinal cord degeneration, only vitamin D. I have read medical reports that state otherwise and reported both times that I have improved and he still wont try b12 injections. Probably worth requesting a full MRI of your spinal cord.

    • Bev February 13, 2016 at 5:56 pm #

      Hey Graham!

      Yes, thank you, I am very well at teh moment. I decided, about 5 months ago to try to do without the L-glutamine. Within two weeks, I was bleeding and cramping! I had not seen blood in years.

      Needless to say, I am back on the old L-glutamine and tried to also fast track ridding the bleeding by incorporating something new (the curcumin), that was recommended to me by the girl at my favorite vitamin store.

      It worked a charm, so I shall keep on it!!

      Thank you for asking. I appreciate it:)

      • Graham from England
        Graham February 14, 2016 at 1:29 am #

        Good to know L Glutamine is still working for you though. I also use turmeric occasionally but it’s getting a bit much with up to 8 doses of this and that to remember everyday.

        • Bev February 14, 2016 at 8:00 am #

          I know Graham. That’s the problem, isn’t it? Trying to ‘shave’ down the number of things that we take every day. It’s a pain.

          That’s why I tried to ‘lose’ one thing…the L-glutamine…my body said, no, I don’t think so. It obviously is something that I need to keep on taking.

          I really do wish that the same things worked for all of us. That would be so easy.

          The curcumin worked so fast for me, that I just had to incorporate it into my daily deal.

          • Graham from England
            Graham February 14, 2016 at 8:19 am #

            It certainly is Bev, still important to experiment though. If it weren’t for the pioneers we would still be living in caves. The 1st time I spoke to an IBD nurse she recommended turmeric, definitely in my top ten. The nurse is at the coal face and listening to the patient, doctors are more intelligent and educated but there’s nowt so blind as those who cannot see!

          • Bev February 14, 2016 at 8:36 am #

            Yes, the wonderful nurses, who DO hear us…and who even disagree with the doctors at times.

            We can’t blame that in the doctors being over worked, either. Nurses work just as, if not harder, than most doctors. They are also tending to patients a whole lot more than the doctors.

            Turmeric is a wonder for sure. I was surprised by what it has done for me, even after I thought that I had discovered MY magic bullet.

            Experimentation…yes, something that I had forgotten that I could do!

      • Julia February 14, 2016 at 3:06 am #

        H Bev could you tell how much cur cumin you take . I would like to give this a try. Thanks Julia

        • Bev February 14, 2016 at 7:53 am #

          I take THERACUMIN double strength. I take one capsule daily.

          • Bev February 14, 2016 at 7:54 am #

            It’s made by NATURAL FACTORS.

          • julia February 15, 2016 at 10:40 am #

            Thanks Bev x

          • Bev February 15, 2016 at 11:06 am #

            Always :)

  4. Ravi S Pandey February 13, 2016 at 5:42 pm #

    Usually the neuropathy associated with ulcerative colitis is secondary to deficiency of vitamins and nutrients hence it is good to take a therapeutic supplement and get investigated for the same.
    Usually nutritional deficiency present with peripheral involvement ( peripheral neuropathy—–involving tingling in fingers and toe etc and only in very advanced cases involve trunk( shoulder,breast trunk etc) hence in your case it is unlikely to be nerve damage. if your doctor still feels that it is nerve damage, a simple nerve conduction test will tell you whether the nerves are damaged.A good clinical examination by your doctors (reflexes, sensations, tests for vibration and position etc etc) will very often tell the diagnosis. If you have any visual problem,see an ophthalmologist who will rule out uveitis which is a serious complication of ulcerative colitis—–it is unlikely in your case because you do not have any other symptoms of iridocyclitis or posterior uveitis.

  5. Graham from England
    Graham February 14, 2016 at 8:37 am #

    Great to hear from Ravi who seems well educated on this subject. Personally speaking, if I gave up on the first no I would be in a healthwise hole somewhere like some members of my family. It is good to be slightly paranoid and not take no for an answer, trust your gut feelings, doctors aren’t up to date on everything. You get better treatment by holding them to account, a few stong letters to my doc have turned me from being dismissed as perhaps a nervous worrier to uncovering serious complications and now she can’t do enough to help. Keep looking, asking and questioning.

    Its the same in my business, the fussiest customers make me better at my job and also receive the best service.

    • Bev February 14, 2016 at 8:40 am #

      This is so true and so well said, Graham.

      I, too, am not regarded as simply a worried ‘nervous nellie’ any more. My doctor takes me a lot more seriously. I have an inkling that he even may be recommending probiotics and other natural things, these days.

      I mean, one can not help but see what is right in front of one’s eyes! I have been in ‘remission’ for going on 10 years soon.

      There is NO denying that. I was so ill while on meds for 15 years. Damn that asacol anyway…

  6. Graham from England
    Graham February 14, 2016 at 8:56 am #

    Yes damn that Asacol! Which is also the gentle touch IBD medication. I also have an inkling that the doctors view may have changed.

    • Bev February 14, 2016 at 9:10 am #

      Yes, that benign little med called asacol. The least harmful one? Perhaps for some people. Certainly not for me!

      Of course, I was told that it was the UC causing my worsening distress, not asacol. No, that drug has virtually no side effects, I was told. Really? It was the easiest, weakest drug for UC, apparently.

      Yes, I think that is true Graham. Doctors (especially the family doctor, not the gastro docs yet due to protocol and all that rot) are likely seeing that the harsh meds used to combat UC are having quite the opposite effect, when it comes to creating other, sometimes more dire consequences.

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