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Possible Silent IBD???


I'm new to this forum and immensely frustrated with my condition and hoping that someone could please, please help.

Unfortunately in 2020, my life changed drastically. I started with an abscess in my nether region. Now I'm not stating that this triggered other health issues more to the point that it indicated I had other underlying health concerns.

Following the abscess, it was indicated I have spinal stenosis with spondylosis, bulging discs, leg weakness especially my left leg with radiating pain shooting into them. Enlarged prostate, sleep apnea, and chrons disease I have also had polyps removed from my bowels. This is in addition to high blood pressure, cholesterol, incontinence and experiencing mental issues due to dealing with it all. I have also very recently learned that I could also be diabetic (I feel if I was a horse I would have been put down :-/)

As you can imagine I'm on an array of medication. Now you're probably wondering what the above has to do with IBD!!!

Over the past few months, the gastro consultant had arranged for several tests to be conducted relative to my bowels however, all the results have returned to be negative indicating no apparent issues. Good huh! Well, not quite so straightforward.

Every time I eat I have an urgency to visit the toilet, this is hugely embarrassing if we ever go out for a meal which although extremely rare due to my varying conditions is also the case even if I am at home. I have been managing a diet and am very particular about what I do and do not eat.

My question to you good people is that, although my results have essentially been returned as all clear, is it possible that I have silent IBD? Has anyone had a similar experience? I find it very disappointing that the results have not identified anything because only I know the discomfort I endure. Bloating, excessive flatulence, abdominal cramps diarrhoea etc.

I believe every person's body is unique internally and what works for one person does not necessarily work for others. Please do not misinterpret me I am by no means an expert but, I take a considerable amount of morphine to manage the neuro pain, I believe that the morphine is masking or almost hiding my bowel issues again, has anyone had any similar experiences?

I would greatly appreciate any feedback so that I can investigate this further as the consultant has essentially abandoned me stating that they can't find anything and has referred me back to my GP compiling a letter stating the latter. I feel I am fighting this alone as well as taking care of my other ailments and as mentioned very frustrated because I know what I feel and I do know there is something not quite right even if the results do not indicate anything conclusive.

Please could someone HELP me?

Thank you in advance

  1. Sorry you are experiencing all this, have you been checked for IBS instead of IBD? Do you have pain with the urgency? If you are having urgency with diarrhea, try Imodium either before or after you eat.
    Let us know how you get on
    Vern - IBD Team Member

    1. Hi Vern,

      Thank you for taking the time to reply.

      I was always under the impression that IBS and IBD were almost one of the same thing or at least very similar.

      I have also tried Imodium and similar types of medication and have almost always experienced similar results they appear to work for a while and then it's very much back to normal.

      I feel as though I have exhausted most of the avenues and not really sure which way to turn now.

      I do appreciate your comments and taking the time to reply.

      Many thanks

      1. It's common to think IBS and IBD are the same but they are actually very different. IBD is chronic inflammation/destruction of the bowel wall which can lead to ulceration and narrowing of the intestines while IBS is a disorder of the GI tract. Having said that, it is possible to have IBS and IBD at the same time. Have you had a colonoscopy?

    2. I had a colonoscopy probably coming on to two years or so, that's when they removed the polyps and identified that I had Crohn's.

      Over the course of the past couple of years, the hospital has done tests and found traces of blood, however, with the most recent tests with nuclear medicine, all the test results have returned negative, I have been given the all-clear but all the symptoms remain, the consultant has now put it down to my diet and said that I was going to be referred to a dietician with the hospital.

      I did try appealing to the consultant but he wasn't having it, he is convinced that it is my diet hence, through frustration, I started researching it myself and came across silent IBD.

      Are you familiar with silent IBD please?

      Thank you

      1. Hi . You certainly have had your hands full and your concerns are definitely understandable. First, I want to note that Crohn's is a form of IBD. In fact, it is one of the two predominant types along with ulcerative colitis. This article from our editorial team discusses the types: Is the doctor you have been seeing a gastroenterologist? A gastroenterologist is a specialist in this area and should understand what the earlier Crohn's diagnosis means. Plus, the diagnostic process is pretty extensive and is about more than just some blood tests (See this article on the process: Please don't hesitate to see an expert or to get a second opinion if you feel your concerns are not being heard. Hope this information is helpful and that you get some answers and relief soon. Best, Richard (Team Member)

    3. Hi Richard,

      Thank you for your message.

      The consultant I was communicating with was a gastroenterologist and he had several tests conducted including nuclear medicine where you're given a capsule to swallow and return four to five hours later to have a scan carried out, in addition to this blood, stool sample and celiac tests were conducted however, all the tests proved to be negative.

      I'm frustrated because I know the issues I have to deal with together with the pain and suffering, also I don't understand that I was diagnosed with Crohn's before the tests were carried out, I wasn't aware it disappeared on its own. Crohn's and ulcerative colitis are hereditary in our family, my dad, sister, aunties, and niece to name a few all have it some have colostomy too.

      I do have many symptoms related to IBD but weight loss is not one of them cramps, diarrhoea, urgency, incomplete bowel movement etc are some of my symptoms.

      I think more than likely I will be contacting my GP again in order to start the process of consulting with a gastroenterologist again.

      Many thanks for your input and help.

      1. Hi . You are very welcome and hope you can get some answers soon. The family history would certainly seem to be a red flag. I do want to mention that, while many experience weight loss, it is not universal. In fact, in this article our patient leader Marisa wrote about reasons for weight gain with IBD: Please feel free, if you like, to keep us posted on how you are doing and to ask further questions. Best, Richard (Team Member)

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