Is this Crohn's or IBS

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So I've been having pain for over 4 years now. They took the gallbladder because they found stones during ultrasound.

Then had an endoscope after the pain persisted but it was always in my upper stomach and they found a hiatal hernia, acid and h.plori (which they tested me for again after it cleared up and it was negative)

I've been constipated for years and get piles as well as sometimes having a bit of blood because my poo is like rough jagged shaped balls so i don't have the diarrahea aspect of crohn's or ibs or nor do i get ulcers in my mouth or anything like that.

I do get pain in my upper and lower right side now as well as my left so I'm scared it's crohn's.

I've read stuff online about this disease and it's terrifying. Please don't think me ignorant but I don't want a bag or my life expectancy reduced or die from complications from this.

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  • Posted

    Hi,

    I'm sorry to hear that you've been struggling with pain and other symptoms for so long.

    You can have constipation with Crohns rather than loose stools but it's impossible to say from your symptoms whether you do or don't have Crohns.

    Have you had a calprotectin test done? (It's a stool test). If not, I would ask for one as calprotectin is raised in IBD but not in IBS. There are other factors that can result in a high calprotectin result, other than IBD, but it's a good way to indicate if you have inflammation in your intestines.

    When my calprotectin test result came back high I was then referred for an endoscopy, MRI and and finally a pill cam (capsule endoscopy).

    Inflammation markers in your blood such as ESR and CRP can also be raised with IBD (although not always).

    Do you get any other symptoms? I had a lot of systemic symptoms, not just gut issues. 

    My mum, my aunt and myself all have Crohns. The most difficult times that we all went through were before we got a diagnosis. All of us are doing great now and are very well. My mum is in her 60's and has had Crohns for around 20 years - you wouldn't know though as she is super fit and active. 

    Try not to panic - if it does turn out to be Crohns it is possible to feel better. I have mine under control now and it doesn't stop me doing anything that I want to do. xxx

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    • Posted

      hi thanks for the reply. No haven't had a protection test done not sure if they would have done it by now if the suspected crohn's or if all my doctors are dim.

      I've had loads of bloods done but they always turn up fine.

      What do you mean by systemic symptoms?

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    • Posted

      With some doctors you need to ask for the calprotectin test - they don't all know about it. My partners sister had to ask her GP for it last month - the GP said she'd never heard of it! 

      It is such an important test though as if your result is raised and you have long term gut issues then  you should be referred on for further investigations.

      If you are worried about whether it could be Crohns rather than IBS then I would ask for the calprotectin test. 

      Maybe look up the test - there is information readily available online that will explain how it works xxx

      In terms of the blood tests, my inflammatory markers (ESR & CRP) were normal too. I was told by one GP that they would expect them to be raised if I had Crohns. (This isn't always true though and certainly wasn't for me). I was only referred for further tests because my calprotectin was high.

      ... By systemic, I meant symptoms any where else in your body rather than just the gut.

      Everyone is different and not everyone will have the same as I did but to give you some idea, my symptoms, in addition to my gut issues, included:

      peripheral joint pain, back, hip, rib pain, eyes affected, foggy head - couldn't focus or concentrate, ringing in my ears, acid reflux, a cough for months (from the reflux I think), ridiculous fatigue - I was having to go back to bed during the day, I couldn't drive my car, I couldn't even carry an empty shopping basket at the supermarket on one day - the fatigue would come on suddenly and knock me out. I had sore lymph nodes, mouth ulcers, would get a temperature. My joint pain was worse in a morning - I couldn't sit up to get out of bed, I had to roll out onto the floor and then couldn't stand up fully. The plantar surface of my heels was painful to walk on. 

      Bloods showed that I was anaemic too.

      ... as awful as all of this sounds, and was, I now have no symptoms. If it does turn out to be Crohns that you have, please know that it is treatable. xxx

      My mums symptoms were different to mine. She had constipation issues rather than loose stools. She had nausea, loss of appetite, she lost a huge amount of weight. She had the extreme fatigue too. She was very ill  and went through a tough time around the time of her diagnosis but now is very fit and active - she has no symptoms either. 

      If you are not satisfied with what your GP has said then do push for further tests to try to find out what is going on xxx

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    • Posted

      How did they got treated? Liquid diet?

      What do they eat now?

      I'm especially interested in your mother case because I also have constipation.

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    • Posted

      Hi, 

      When my mum was diagnosed almost 20 yrs ago she had become incredibly I'll - she had wrongly been told that she had depression and this meant that her Crohns got worse and worse ( over a few years) until she was rushed into hospital for emergency surgery. Part of her intestine was removed.

      She made a very good recovery following surgery but does watch what she eats.

      We follow the SCD diet. It has been life changing for us.

      I am not saying that it would work for everyone - nothing ever does, does it. But, to me I felt the SCD diet was worth a try - that it wouldn't do me any harm but could help. I had a huge improvement within 2 weeks. It's a hard diet to stick to initially - you have to stick to it 100% or it doesn't work - but it becomes much easier, and I don't struggle at all with it now.

      When my Crohns was discovered I was told it was extensive with ulcerations throughout the whole of my small intestine and cobblestone mucosa which indicated I'd had it a long time. I also had stricturing.

      When I asked if there was anything that I could do to help myself I was told that there was nothing that I could do and that I would have to take immunosuppressants.

      My degrees are both in health and this didn't sit well with me. I had listened to a presentation by a consultant who said that it is now widely accepted that Crohns has a microbial trigger (yes, you can inherit a genetic predisposition but you need a trigger). To me, if we have dysbiosis in the gut then why do we not try to focus on addressing this?

      I insisted that I wanted to try diet first and refused the immunosuppressants. I was told that I would just get more sick.

      I'm really glad that I didn't listen and chose to try diet as last month the specialist changed me from 3 monthly check ups to 12 monthly  check ups, saying that she couldn't believe that she was doing it and she never thought she would be saying this to me.

      Just to add, I also take LDN (low dose naltrexone). I have only been taking this for around 4 months. (I started SCD in May 2016 so 20 mths ago). SCD got rid of all of my gut issues. What it didn't get rid of was my rib, back, hip pain but this appears to be a different autoimmune condition - spondyloarthropathy. I went to see a consultant who was involved in writing the NICE guidelines for this condition and he thought it was spondyloarthropathy. My other aunt (same side of the family) has also got fused vertebrae and is now having investigations to see if it is spondyloarthropathy / ankylosing spondylitis. ( this condition is more common in people with Crohns).

      .... Sorry to digress, I just wanted to point out that I started taking the LDN to help with the only remaining symptoms I had - the spondyloarthropathy symptoms. By week .6 it had got rid of these.

      LDN (Low dose naltrexone) is also used for Crohns. It has to be prescribed off label though. It does not have the side effects that the immunosuppressants have. I would encourage anyone with either of these conditions to look it up and make up their own mind. There are research papers available and the LDN research trust has information. There are great you tube presentations by consultants too. 

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  • Posted

    Sorry to hear you're going through a rough time. Sounds like you had a lot going on within your stomach and at least they've treated the several issues they found. 

    ?I have Crohn's but I was surprised recently when a new consultant picked up on my intestinal pain points being faecal impaction - basically everything gets backed up and goes firm. It hurts me where the large intestine has it's four sharp bens - which sounds to be in the areas you mention. Look at a diagram to see - it's my top right just under the ribs, the same on the left, then bottom left just above the hip and same bottom right.

    I'm still struggling to get my Crohn's managed by since trying various laxatives readily available from a pharmacy - it's completely removed the pain and discomfort in those areas. I was also having very loose stools most of the time, but sometimes also with firm extremely firm stools all in the same sitting - that's because non-fibrous food works its way around the blockage. I believe it was also adding to my nausea after eating or even drinking water. 

    ?Interestingly, my new consultant also felt my intestines and showed me what to feel for. If you push a couple of fingers deep in the top right just below the rib cage (for example) you'll feel a sausage shape - it's well pronounced if it's backed up.

    ?I first tried a Sena based laxative - helped a bit but then stopped working on the blocked stuff. Then I moved on to a bisacodyl based one (all cheap and available to the public) - it increases your intestines contractions to help things through - it really did the job and over weeks I'm now good. Although - I'm also aided by being on an entirely liquid diet under prescription for the last 6 weeks. Even then - it's taken 6 weeks to get everything out. I've been astounded!

    ?Anyway, that's enough to about my bowel habits smile I hope this information helps you. Ask your GP about Faecal impaction, or just try the laxatives I mentioned. Laxido has been recommended as a daily preventative medicine once I'm back on food. Good luck and let us know if it helps. p.s everyone has given v sensible advice on Crohn's - Calprotectin test is where it's at.

     

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    • Posted

      It's a great story to hear.

      I'm also in the early stages and still diagnosed as IBS even if I had increased calprotectin. I have mostly constipation and no bleeding in stools. But I have fatty stools and loss of weight. Also nausea and constant chronic pain in LUQ, under left ribcage. Also digestion upset and heartburn at times. And also periodontal disease and ulcers at times.

      I don't know what to say to the GP or GI as they insist in IBS.

      Should I try laxatives? How about diet? I have tried Fodmap. No improvement. But removing gluten helped (even though I tested negative for celiac)

      Difficult to think about liquid diet when I am already so thin.

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    • Posted

      Apologies to the OP as I dont intend to hijack your post but would like to reply to pcbessa.

      What was your Calprotectin score? As mentioned by someone else above - blood markers don't always show inflammation whereas the calprotecrin might. I'm like that and at least one other at local Crohns meet up is the same with fairly severe symptoms. Your GO should be challenged as the NICE NHS guidelines give a score over which it's IBD. That score is usually 50 or greater. Below is likely IBS.

      If you have faecal impaction the GI ahould be able to feel it through your flesh (although mine missed it everytime!) - like when they inspect you each time, or it will show up on a CT scan like mine did (small chance it was MRI scan as I've had both recently but pretty sure it was CT).

      Fodmap is supposed to help with IBS which is also common with many people who have IBD. If it's not working it was suggest you need more support- be that they've misdiagnosed, you need to see a dietician, get psychological support from the impact it has caused etc.

      Have you requested a second opinion and moved to another GI? Check the Crohns and colitis UK site and see if there a a meet up near you - ask there. I did and it's made a massive difference.

      It may not hurt trying some sena or bisacodyl laxatives. You can buy off the shelf at pharmacy. It's taken 6 weeks of fairly regular laxatives and liquid diet to get me more or less empty of old solids. It was that impacted. They may cause some discomfort during the process.

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    • Posted

      I totally agree with this. If your calprotectin score is above 50 it indicates inflammation which you don't get with IBS. With your ongoing symptoms and a calprotectin test above 50 they should refer you for further investigations.

      Look up calprotectin stool tests - if the result is higher than 50 this indicates that it is not IBS - something else is going on.

      This test is key for you - go back to your GP if your result was high and push to be referred.

      Also, bear in mind that calprotectin test results can fluctuate with disease activity. So if you've had a normal result but symptoms get worse then go back and ask to be retested. 

      Both my CRP and ESR bloods were always normal. I was told by one GP that if I was ill with Crohns then he'd expect these to be high. This is wrong! Yes, they can be high but they aren't always.

      When my Crohns was found it was extensive - ulceration throughout my whole small intestine with some stricturing too. .... yet the inflammation markers in my blood (CRP and ESR) had never been raised. 

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