Sorry to post again - Qs on symptoms

Hi there thank you for your response, I'm glad I'm not the only one with bad back pain, I had an ultrasound and they found inflammation where my small intestine meets my large intestine but I still haven't had a colonoscopy yet because they stopped it for coronavirus! got an MRI coming up and they might find a similar problem to yours maybe because I do get constipation but its just odd how the stool is never hard

hope you feel better soon 😃

Hi. Sorry to jump into this discussion but I wanted to ask Lily about not being able to get Crohns confirmed. You say that you believe you don't have Crohns as far as you are aware, doesn't it worry you that there could be a possibility you might have it, and leaving it untreated could cause future complications? I am sort of in the same boat, but for a different reason. I have raised faecal calprotectin results every time my stools are tested (usually around 300), yet I don't get the common symptoms of Crohns. I am taking a regular dose of Omeprazole, which I have read can increase faecal calprotectin levels in stool samples and give false positives. I have had an endoscopy and 2 colonoscopies (one where biopsies were taken) since becoming ill in the past 5 years, and all they found were a few polyps which were removed and benign and hemorrhoids, not even the biopsies revealed anything. I was told the chance of having Crohns is very slim, but to refute it totally I would need a small bowel MRI. This is where my issue lies, ever since I started getting ill my anxieties have been getting worse and worse, and I have cancelled the MRI due to the fear of ingesting the contrast fluid you have to take. I have a major fear of ingesting anything new as it seems foods play a major role in how I feel. I have had many blood tests and they are always fine, apart from the last one a few months ago, which showed I had high allergy marker levels, which was a totally new development. This is now under investigation, but my main concern is that even though I believe I don't have Crohns, without getting the MRI done I can't be sure. The only thing saying I have Crohns is the calprotectin results, which yes could be caused by Crohns, but could equally be caused by the Omeprazole and/or allergic reactions causing inflammation. I really don't know what to do or think, and any helpful comments, thoughts and advice would be really appreciated.

Hi Paul, I suspect my circumstances are entirely different from yours. I'm 75 and have had undiagnosed bowel problems all my life. Apparently I was severely constipated from birth, and all my childhood memories are of being given large quantities of laxatives, sometimes on a daily basis, which probably didn't help matters. Not sure whether these were prescribed by a doctor - but then again, even doctors believed "regularity" was vital back in the 1940s and 50s.

The first attempt at investigation was when I was rushed into hospital aged 9 with suspected appendicitis. This in fact turned out to be the first of many episodes of intestinal obstruction. I don't know what, if any, tests were done then, but I was only in for a couple of days and there was no follow-up.

These obstructive episodes continued for the next 20 years, occurring several times a year. I was hospitalised at least five more times for obstruction during this period, but nothing came of it. Each time it was assumed I was suffering from impaction. When a rectal examination found no impacted stool and enemas produced no results other than a return of the enema, I was simply discharged with no diagnosis.

There was one attempt at a barium enema during this 20-year period, but it failed totally because the colonic preparation didn't work, instead producing a severe attack of obstruction.

Finally, aged 29, I largely solved the problem by introducing more fibre into my diet. It might sound strange now but the importance of dietary fibre was completely "forgotten" during a 20-year window in the 1950s and 60s, only surfacing again in the early 70s!

The change in diet at least put an end to the obstructive episodes but I've suffered from constipation ever since. A few attempts at colonoscopy have failed in recent years, as the preparation totally failed each time. This inevitably results in a lot of screaming, shouting and accusations that I haven't done it properly - which I always have, of course. That's why I always refuse colonoscopy now. The only relief came in my mid-60s, when I was diagnosed with a mildly underactive thyroid and put on a small dose of L-thyroxine. I started having regular bowel actions for the first time in my life, but this only lasted a few years before constipation set in again, presumably as a result of the ageing process. (My TSH and T3 levels are always normal these days.)

I now suffer the delights of "overflow diarrhoea" due to my sluggish colon, which I'm treating with Mov i col - with some slight success. Increasing my already high fibre intake just makes things worse. Over the past 50 years I've tried just about every dietary regime - each time for at least a couple of months - and nothing makes any difference.

Sorry if this makes depressing reading for someone like you, who I suspect is starting out on a similar road to mine. I'm afraid the bottom line (no pun intended) for those of us with intestinal conditions that don't fit any known pattern is that we need to find our own path.

Hi Lily

So sorry to hear you've had to endure such problems for what seems to be most of your life, it certainly puts my 5 to 6 years of problems into perspective. I guess, like the majority of people who suffer undiagnosed digestive conditions, that you have learnt your own methods of managing and coping with your ailments, and I certainly agree with your statement about having to find our own paths in life, to make living with conditions such as ours easier. I feel that due to my inability to go through with a small bowel MRI my doctor has given up on me, I know we have to endure procedures in our lives that we may not like, but when you throw severe anxiety into the mix it's extremely difficult go through with something that you are terrified of doing.

I should sort of count myself lucky that I haven't been diagnosed as yet, if I did have Crohns Disease then I would be on a course of steroids and/or immunosupressants, and with the current outbreak of Coronavirus I have noticed a lot of CD sufferers are stopping their immunosupressant meds in the hope that it will build up their immune system to cope with this virus should they in fact get it, at least I don't have to go through that.

One thing I have learnt after talking to several CD sufferers is that at times of a CD flare up I would be feeling a lot worse than I do. All I really have is a constant nauseous feeling that can vary in severity from one hour to the next, and an odd feeling that my body just isn't working quite right, especially my head which gives me an almost constant lightheaded feeling that's best described as feeling like I am on a boat. Yes I have really bad days when symptoms are at their worse, which could be contributed to CD, but then I can wake the next day and feel perfectly fine, I find it hard to believe CD flare ups can disappear overnight!! I have also been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, both of which can have affects on the digestive system. Apart from the small bowel MRI I have had every test under the sun done on me, including numerous blood tests and all that was ever found was slightly raised platelet levels right at the start of my problems, but these have been fine ever since, one raised allergy marker result, raised faecal calprotectin results in recent years (since taking Omeprazole), polyps and hemorrhoids, surely if I had something more sinister going on something would have been picked up??

I'm hoping that one day I might pluck up the courage to go through with the small bowel MRI, but until I can manage my anxiety, then I don't see that happening anytime soon. What's more frustrating is I know that this scan could give me answers I need, making my predicament even more annoying.

Thanks for the reply Lily, I really appreciate your time, and I do wish you all the best for the future.

Hi,

That's a really good explanation to the watery stools. I was confused because because IBS suffers have hard stools when constipated but mine were still soft and I was previously diagnosed with IBS, never had this much back pain with IBS though!

Got an MRI next week and they were really quick with it since I only had my ultrasound this Tuesday. Hopefully will get a clear picture soon

Thanks for the helpful response 😃