Hi, my name is Rimmy! I was diagnosed with BAM 10 or 12 years ago. It is a living nightmare, ...

Rimmy
Rimmy Community Member Posts: 43 Listener
edited March 2025 in Talk about your impairment

I was diagnosed with BAM 10 or 12 years ago. It is a living nightmare, only yesterday I was coming home from the market and got the twinge and knew I would not make it home so had to nip into pub to use toilet.

I take eight Imodium a day and two sachets of Colestyramine and even then , sometimes. has no effect. A sip of water can sometimes set it of and it could be seven visits in first hour.

I have just actually read the patients information leaflet and that says for diarrhoea to use three to six daily.

Well that is my first post. Any advice would be appreciated.

Thanks

Comments

  • Holly_Scope
    Holly_Scope Posts: 6,351 Online Community Team

    Hi @Rimmy and welcome to the community. 🙂 Bless you, really sorry to hear this. Have you spoken with your GP? If not, I'd definitely recommend this.

    I hope you don't mind but I've updated your title and moved the post to an area that'll make it a little easier for members who might be able to advise what works for them.

    Best wishes

  • Rimmy
    Rimmy Community Member Posts: 43 Listener

    Thanks for the post. I was under a consultant gastroenterologist for several years and that is what he recommended but I have pondered on the idea of making an appointment with my doctor to discuss reviewing my medication.

  • Rimmy
    Rimmy Community Member Posts: 43 Listener

    Thanks for the post Santosha,

    The other drug is Colesevelam which I used to take but it did not improve my condition. I will look on the GUTS UK website, many thanks

  • Rimmy
    Rimmy Community Member Posts: 43 Listener
  • Rimmy
    Rimmy Community Member Posts: 43 Listener
    https://forum.scope.org.uk/discussion/comment/1003943#Comment_1003943

    Thanks for info, perused through some of the posts and something caught my eye and when I mentioned it to doctor, who I was seeing for a different ailment, he sent me for a blood test.

    Thanks

  • noonebelieves
    noonebelieves Community Member Posts: 677 Championing

    Hi @Rimmy,
    I just popped in to say hello and can see that @Holly_Scope and @Santosha12 have already given you some great advice, so I don’t have much to add. As Santosha12 points out, I’ve also found the advice from Guts UK very useful in helping me understand my own issues better.
    I do, however, empathise with you regarding your GI issues. Alongside multiple health conditions, I also have diverticulitis, IBS-C, functional dyspepsia, and gastroparesis, so I understand how these GI issues can significantly impact your quality of life.
    Wishing you all the best on your GI recovery journey.
    Best wishes. 🤝

  • noonebelieves
    noonebelieves Community Member Posts: 677 Championing
    https://forum.scope.org.uk/discussion/comment/1010392#Comment_1010392

    Hi @Santosha12

    I’m so sorry to hear about the severe & significant impact IBS has had on your health, including work. While I haven’t used Imodium and I’m IBS-C, I did experience significant side effects from linaclotide and prucalopride….both highly effective for many with IBS-C, but unfortunately not for me. I’ve found that Naloxegol works better, so I’ve stuck with it.

    Living with GI issues is incredibly challenging, especially when it affects all outdoor activities on top of the difficulties that come with physical/sensory &MH disabilities. I really hope the magnesium supplements are helping you keep things in check. I trust that, moving forward, you’ll find the best way to manage your symptoms.

    You seem very knowledgeable in this area, not only as an IBS Network member but also through your lived experience and expertise as a healthcare professional. Thank you for sharing your insights 👍they are truly appreciated.

    Wishing you both the very best

  • noonebelieves
    noonebelieves Community Member Posts: 677 Championing
    https://forum.scope.org.uk/discussion/comment/1010840#Comment_1010840

    @Santosha12 , @santosha12 OMG! You really have so much going on. I truly hope things take a turn for the better. It is always difficult when doctors leave patients with a functional diagnosis like IBS. It almost feels like a lifelong label that says, we have done all we can, just get on with it (I have certainly been treated that way too).
    My diverticulitis initially went under the radar despite being in excruciating pain and running a high temperature. Thankfully, it was caught in time and treated with IV antibiotics. While I have not had as many episodes as you, having gone through it 3 times, I can only imagine how exhausting it must be for you to endure it 16 times. That is beyond tough. I am really sorry to hear about your kidney function being affected on top of everything else, as if you have not already had more than your fair share to deal with.
    Please keep holding onto your sense of humour. It can carry you through the toughest times in ways that no medication ever could. I remember our past conversations and I am certain you have got the “Ken in you “to keep going, stronger and more resilient than ever.
    Wishing you the very best. Take care! 🙏🏽💪🏽

  • Rimmy
    Rimmy Community Member Posts: 43 Listener

    Good Evening everyone, very grateful for the replies albeit I may not be suffering as bad as some,

    The blood test I went for was a full blood count and magnesium. This last week I have really stuck to what my

    gastroenterologist prescribed, two sachets of Colestyraymine and eight Imodium, four in morning and four at night. Now the problem is that although no sign of diarrhoea it almost impossible to go toilet as I am bunged up. It hurts so tonight I took a sachet of fybogel which helped. So it now is a case of trial and error.

    Sorry to hear your having a rough time Santosha12 but alas as noonebelieves says it is something we have to get on with. I have diverticular disease also but how do you tell if you have an inflamed intestine? I had covid three times also and as I have COPD it was quite difficult at times, although the doctor and hospital staff were brilliant.

    Goodnight and God Bless

  • noonebelieves
    noonebelieves Community Member Posts: 677 Championing
    https://forum.scope.org.uk/discussion/comment/1010872#Comment_1010872

    Bless you, @Santosha12, Keep going, dear …you are stronger than you realise, and we’re all here cheering you on. Stay strong! 🤗

  • noonebelieves
    noonebelieves Community Member Posts: 677 Championing
    https://forum.scope.org.uk/discussion/comment/1010914#Comment_1010914

    Thanks for the feedback, @Rimmy .I’m really sorry to hear that your diverticular disease and COPD have caused you additional challenges. I just wanted to share some insight from my own experiences after picking up on something you mentioned:

    “But how do you tell if you have an inflamed intestine?”

    For me, the key is the severe pain. I can clearly distinguish it from IBS pain due to the intensity. My first flare-up lasted about a week and was treated with antibiotics at home. The second and third required hospitalisation(3rd :>month) due to heavy bleeding and IV antibiotics. The abdominal pain left me utterly exhausted—so much so that I could barely think or do anything. I slept like a log, which was unusual for me since I’m an insomniac.The pain always starts in my left lower abdomen, and it stays there for me. On the third occasion, I was fortunate to avoid bowel removal (thanks to the incredible nursing care) despite being told I had an abscess, a bowel obstruction, and signs of peritonitis.

    (You will definitely feel a significant difference in the intensity of pain if there is an infection or an abscess—it’s unbearable. It’s not always the case, but during my third flare-up, I also ran a raging temperature.)

    Hope this helps provide some clarity, and wishing you all the best!

  • noonebelieves
    noonebelieves Community Member Posts: 677 Championing
    https://forum.scope.org.uk/discussion/comment/1011063#Comment_1011063

    Best Wishes @Santosha12 . That’s really nice to hear …Have a lovely day 😊

  • Rimmy
    Rimmy Community Member Posts: 43 Listener

    Thanks for the replies. Just got to nip out, my lift is here, I will clock in again tomorrow.

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