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Constipation & Crohn's Disease

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jaw90561
jaw90561

hey all.

so I have had crohns for over 2 years now. and throughout the lead up to my diagnosis and since then, I have literally never had issues with consitpation. until about 6months ago I started getting really bad pains and my bowels werent opening.

I had an xray and it showed that I was really bunged up. so my GI doctor started me on some mild laxative sachets which you dissolve in a drink.

now I guess I kinda thought that I would take the laxatives for a few weeks and theyd clear me out and I'd be back to normal. but to this day I am still having to take them multiple times a day otherwise I literally cannot poo.

I am in constant pain every single day, sometimes I get more severe sharp pains that come and go. I am nauseous and have no appetite. and I now have blood in my stools. sometimes i will get so bunged up that i vomit a lot and cant even keep water down.

so 2 weeks ago I had blood tests and stool tests done and all came back totally normal. so my GI doctor and nurses keep saying, just continue taking the laxatives. I've been taking them for 6months and had no relief. the tests are showing nothing and literally everyone is now doubting what I'm saying I'm going through because they dont have evidence. I've tried explaining that if my issue is constipation then it wont really show up as inflammation because it's the blockage that is causing the pain!

  • so first of all, is this a normal thing for someone with crohns to experience? I.e. crohnic or long term constipation?
  • second of all, any tips on how to help others understand what it's like dealing with this, especially because it's not something they can physically see?
  • and thirdly, who else should I ask for help or what else should I try???

thanks everyone, stay safe xx

0 likes, 14 replies

14 Replies

  • IndieHannah
    IndieHannah jaw90561

    Edited

    Hi

    What your describing sounds like a mechanical stricture. It is entirely possible that as a result of multiple flares you may have developed scar tissue that is causing a narrowing of the intestinal wall and this will not show up as inflammation. However, it can be very serious if left untreated. The fact that you are so blocked you're vomiting should be taken seriously. Usually an MRI will reveal the severity of such a stricture.

    And it sounds like you are suffering terribly with it.

    I know it's probably a hassle but sometimes keeping a journal of each day can really help. Not only having a space to really note, complain and record your symptoms, thoughts and feelings but also this daily act can really help you convey to your care providers what you're going through day to day. In some ways it becomes evidence and can be useful as a reminder to yourself about patterns of symptoms and severity.

    Do you have IBD Nurse Specialists you can talk to or email? If you do then perhaps a discussion with them might help. Sometimes they have more time and more empathy.

    Do you know where in your intestine the Crohn's is and have you had MRI's ? Aske specifically about mechanical strictures and stricturing Crohn's ....... if it is this then usually the only treatment is surgery. But from personal experience, surgery isn't a cure but a great relief from agony, discomfort and starvation!

    Hope this helps a bit.

    Good Luck and keep us posted as to how you go

    Hannah

    • jaw90561
      jaw90561 IndieHannah

      Edited

      thank you for your response Hannah. really appreciate your great advice and what you've mentioned does help put things into perspective.

      I do have an IBD nursing team that I can call or text at any time but I've found that during the current pandemic they seem to be very busy and are reluctant to have me come in to be seen as I'm high risk. also they're keen to hold off any testing I.e. xrays etc until this virus has passed but it could be months for all we know!

      my gp is very helpful so I will have a chat with her this week and see what she suggests 😃

      as you say, I did think it was a bit strange that I keep vomiting due to being so bunged up and they pass it by as if its just a normal occurrence with crohns disease...

      I have had MRIs but not specifically of my whole abdomen. again that will be good to mention when I'm speaking to my doctor. and yes I keep a journal every day:) will start recording my symptoms though as I havent really done that.

      I will keep you all updated thank you again hannah 😃

    • jaw90561
      jaw90561 IndieHannah

      Edited

      Hey all, trust you've had a good day.

      So I spoke to my GI doctor on the phone this morning and he advised me to attend the ER. I am home from the ER now thankfully. I had a few tests done to rule out certain causes all of which were fine.

      I didnt see my GI doctor as he had clinic but the doctor I saw was brilliant. He was really thorough and very helpful. He concluded that he is assuming my problem is scar tissue/crohns stricturing.

      The only way to confirm is via colonoscopy which is obviously all on hold at the moment due to covid19. So I'm not sure how long I will be waiting but he has written off to my GI doctor to inform him of his assumptions and has kindly asked him to speed up the investigation process for me 😃

      So pleased to have finally made some steps in the right direction. Should the colonoscopy show everything being fine I.e. no scar tissue etc, there is some sort of sickness syndrome that he would suspect I could have which can only be diagnosed after ruling out all other possible causes. So either way I should get some sort of treatment (hopefully in the near future)...

      Thanks all for your support and advice. Will keep you all updated if I have any further news. Keep well xx

    • IndieHannah
      IndieHannah jaw90561

      Edited

      I'm so pleased that you have seen a doctor who has taken you seriously and has given you some reassurance that this is a 'thing' and not a figment of your imagination! Even though Stricturing Crohn's is no fun, it must be a massive relief to know that it will be investigated properly.

      I just want to add that although a Colonoscopy is a vital part of diagnosis, it isn't the only determining factor in Crohn's. It really depends which parts of the intestines are affected by the disease: if you have Crohn's anywhere in the small intestine then you will need a small bowel MRI to discover which areas are inflamed or strictured. So if your Colonoscopy is clear then the next step would be the MRI...... which is a breeze as far as investigations go. Either way, I am very happy to hear that you're making progress.

      With Covid-19 going on and investigations delayed it may be worth considering a softer, more liquid diet to help ease some of your discomfort. Your IBD nurses may be able to advise, but just making soups or blending your food might help a bit.

      Anyway, well done for getting yourself seen and thanks for the update

      Stay safe and keep us posted on state of play going forward.

      Hannah

    • jaw90561
      jaw90561 IndieHannah

      Edited

      thanks for your kind message hannah. I'm glad too that we are making progress. wish it could have happened sooner but better late than never!

      yes, someone else had suggested an MRI or MRE which could possibly still be done during covid19 as it's not as risky as the colonoscopy. so I am hoping to speaking to my GI doctor today to enquire...

      thanks for your interest and I will keep uz updated along the way 😃

  • leeniepie
    leeniepie jaw90561

    Edited

    the laxatives you've been given are something you will have to continue with if constipation is on going. if you are so constipated that you are vomiting they should have given you something super strong like picolax or an enema to clear the blockage. How long do you go without opening your bowels?

    • jaw90561
      jaw90561 leeniepie

      Posted

      thank you for your response. I had enema a few weeks back because I got so bunged up and it didnt even get much out! I was bunged up again by the end of the next day.

      so normally I am lucky if I even go once a day. lately I have been managing to go once most days but sometimes I might not be able to go for a day or two...

    • leeniepie
      leeniepie jaw90561

      Edited

      sounds like you need to take more laxatives to be honest. I would think seeing as you have ibd they would have checked for a stricture to make sure that is not what's causing the issues. but for now I would use more laxatives to keep your stool soft and make sure you go every day to avoid getting blocked.

  • hasnaJD
    hasnaJD jaw90561

    Posted

    due to scarring I suffered from a lot of constipation before i had my surgery. It caused a lot of pain and sometimes I was vomiting as food just didn't move along. Over time i had developed a routine, before bed i had a sachet of fybogel and a peeled ripe conference pair. I didn't eat high fibre foods or anything that may bung me up like white bread. I would say find out about a soft fibre/low residue diet and drink plenty of water.

    • jaw90561
      jaw90561 hasnaJD

      Posted

      thank you so much for your advice. I will try an easier softer diet and see if it helps.

      how did you have confirmation that you had scar tissue?? just wondering if theres anything I should be asking my GI doctor for...

      and also what was the surgical process?

      sorry hope that's not really intrusive or personal! dont feel obliged to answer, I just find it really helpful 😃

      thank you for your help xx

  • hasnaJD
    hasnaJD jaw90561

    Edited

    scarring was assumed from the thickening seen in MRI and also later by endoscopy and colonoscopy. I had a lot of narrowing and fistula between parts of the small intestine and years of disease scarred part of the sigmoid colon. So a section of the small bowel and sigmoid colon was removed. A new joining was formed, I was lucky as I didn't need a colostomy back. I'm now on Ustekinumab and doing well. Good luck with your symptoms.

    • jaw90561
      jaw90561 hasnaJD

      Posted

      wow thank you so much for sharing.

      I am on the waiting list for colonoscopy but due to covid I could be waiting another year! however MRIs etc are still going ahead so perhaps I could see if I could have one of those in the meantime...I know others have suggested an MRE too so I will see what my GI doctor suggests...

      thank you, take care 😃

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