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

Rimmy

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

Holly_Scope

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

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.

Santosha12

Hi @Rimmy, i don't have BAM but was investigated for it a couple of years ago via the SehCAT scan/nuclear medicine dept. My research at the time: I think I recall Colestyramene was the first line drug to be used but I can't remember the name of the other one. I'd definitely seek another review from your gastroenterologist.

There's a charity called GUTS UK, you may know of them, they can be of help. I have 4 different/conflicting bowel diagnoses plus query post- covid infectious IBS. it's a laugh a minute (NOT!!) and lost my last 2 jobs because of it/don't work now.

All the very best to you and take care.

Rimmy

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

Santosha12

https://forum.scope.org.uk/discussion/comment/1003940#Comment_1003940

You're welcome, it was GUTS UK who directed me to BAM investigations. I can't take Immodium or anti inflammatories, it's very difficult. I hope you're able to get a review and become more stable with it.

Rimmy

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

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. 🤝

Santosha12

Hi @Rimmy oh you're very welcome. And hi @noonebelieves I'm a member of the IBS Network, got an email off them last week and it looks like they're having some difficulties (? with funding/providing support) so I need to look at that to understand better. They've been of great help as have Scope.

My GI problems have been so extreme it's caused 'structural' problems, say no more ... I even rang the manufacturers of loperamide (hydrochloride/'Immodium) to seek advice 2 yrs ago now after a consultant instructed me not to use it again. They couldn't really help me except to say it is only licensed to use for one week (might have been two) so they couldn't comment on it's effects with continual, long term use. However, very many of my patients were on it continuously and did not have the effects I experienced so I'm not saying it isn't safe, not at all. It was my 'lifeline' to be able to get to my job which I ended up losing anyway 😪.

I've often received conflicting advice about it, especially off my GPs but, suffice to say, I have to go off my symptoms and the fact they 'conflict' with the other diagnoses I have (GI).

Finally, because of the severity of GI symptoms, I had dangerously low magnesium at Christmas, (and low potassium but not as low ti be really dangerous) only found by accident when I had pnuemonia and went into hospital so I've been on magnesium supplements for c 10 weeks and regular blood tests.

I am hoping the answer to that is for me to take Diarrolyte a bit more often but will still need regular blood tests.

I do wish you both well and take very good care 🙏

noonebelieves

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

Santosha12

https://forum.scope.org.uk/discussion/comment/1010761#Comment_1010761

Thank you very much @noonebelieves I have an appointment with my consultant gastroenterologist next week on the phone but can't imagine what she can come up with that we've not already explored tbh. I suspect they think I'm just exasperating, I find it all exasperating myself. Sorry, just added to say this is long and tedious I'm afraid 😱 ! I'm not overly hopeful as I received a letter in January asking if I'm happy to be discharged (because of the long waiting lists), I rang the secretary to ensure I'm not discharged yet but think I may be next week so I'm preparing myself (mentally) for that but will be upset as I suspect there's nothing more that can be done and, as my previous consultant said, I've just got to learn to live with it as it's a chronic problem.

I have diverticular disease too and just recovered from diverticulitis which is around the 16th time now in 3 years. I've had antibiotics c 30+ lots now in 3-4 yrs so they wouldn't help GI-wise but needed them, especially for double pneumonia for 7 wks at Christmas to February.

Had a MRI small bowel study which showed damage in my small intestine to the valves of kerckring so have less area of absorption and tortuosity (redundant) bowel in the colon. It's never ending, no pun intended 🤣🤣

I've ever had any problem like this before I caught Covid three times and I'm hoping to be included in a long covid anti- viral trial next year but suspect that's a pipedream.

I have IBS(m) and think that's why none of the medications work as they are just opposing actions (ie the C or D, with both experienced at the same time 🙄).

I don't really know for sure if it's because of GI problems that magnesium was so low as I was prescribed diuretics that I shouldn't have been on for c 5 weeks that could have caused that, plus losing 30% of kidney function (but that could have been the pnuemonia). So I'm not complaining about that and I'm just glad I'm mostly stable from an electrolyte point of view !

I am really glad for you that you've found a medication that works better for you. I am always grateful for antibiotics I'd have been in big trouble without them. I was described as a 'lost cause' which doesn't exactly help.

I know it doesn't sound it but, despite all of the above, I do still have a sense of humour and that, and my dogs, keep me on the right side of sane, just about!

I do hope you have a good and restful evening and take care 🙏

noonebelieves

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! 🙏🏽💪🏽

Santosha12

Thank You so much @noonebelieves , especially your last paragraph and for remembering what I said about my dad ❤️. I think maybe today, of all days, I needed to hear that 🫠 ! I'm off to write that down 'to keep going, stronger and more resilient than ever' and pinning it on the wall as I forget and I'd be letting the side down 🤗 and myself otherwise. I am amazed to have found this Group and I'm very grateful too for your kind and very thoughtful words 🙏

Rimmy

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

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

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!

Santosha12

@Rimmy I am sorry for you suffering too; I have similar pain to @noonebelieves down the left side but at its worse it's across the top of my abdomen and, intermittently down the right side. I almost always have a hugh temperature when it's inflamed but definitely not when its the IBS. It's also different to my IBS pain which is always spasmodic in nature and usually 'only' when I eat or drink anything but can go on for hours. My stools are different with diverticulitis too. When i get nausea that's horrid and lasts all day.

I've had quite a few tests to check on the Calprotecin levels in my stool (this measures the level of inflammation), my test results were always high leading them to suspect Crohns or Ulcerative Colitis but it wasnt. I often have suspected it's microscopic colitis but not diagnosed with that.

I have COPD too (emphysema) with significant lung scarring but that's from covid. I was 'lucky' that recent double pnuemonia did not lead to additional scarring so I must be strong really 💪 😉 😅.

Oh i was diagnosed with apthous ulcers but did not have have treatment for those and also two polyps were removed at colonoscopy/polypectomy, I can't remember the name of them but they were quite big and was relieved they were found at I think my third colonoscopy (which I'd nearly refused to have !).

Do take good care of yourself. Its definitely not much fun! Sending you very warmest wishes 🙏.

Santosha12

https://forum.scope.org.uk/discussion/comment/1010956#Comment_1010956

Thank you @noonebelieves that made me imagine I'm running towards a finishing line 🤣, in a good way, and whilst it's more a hobble with stick in hand I can feel the support, so mentally, that really helps 😀 and I'm grateful 🙏

noonebelieves

https://forum.scope.org.uk/discussion/comment/1011063#Comment_1011063

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