Suffering for 20 years

[bluelamp]

Hi there!

I have been suffering with super sudden onsets of diarrhea for 20 years now (I’m 30). I basically need to go with no warning and I have to find a loo within minutes.

It's not always liquid, it doesn't always come out easily even if there is pain and my body tells me I need to go. I often have the feeling of not being fully empty after going to the loo.

Having seen many doctors over the years, not one of them told me it’s IBS but they can rule out any other issues (i.e. Chron’s disease).

The sudden onsets of needing the loo NOW are quite random. Sometimes I am good for several months, sometimes it’s multiple times a day for a week. There is no correlation between the foods I eat and when it happens – sometimes I eat loads of dairy, wheat and fruit with no issues, sometimes a cup of tea with milk sets me off.

I am not taking any medication or supplements at this stage.

I work at weddings for a living so most weekends I need to know that I won’t have a sudden onset of diarrhea in the middle of a wedding ceremony!

I would love to hear from others, maybe someone can help me! Thanks so much in advance for any insights, shared experiences or advice!

[jbrking]

Hi. I’m exactly the same! Currently being tested for malabsorption and collitis. Had to take a bile salt tablet last week and be scanned (to get a baseline) and being scanned again today (7 days later). Following that they are going to insert a camera (not looking forward to that!) no sure when I get results. Typically I’ve been ok this week - no attacks! They said usual suspects are wheat or dairy and to try and stop one or other (not both at same time) to see if there is any improvement. I don’t eat much dairy anyway so had salads for lunch instead of sandwiches and been ok. But I usually have salads for lunch in the nicer weather anyway and still had attacks. Like you there’s no rhyme or reason. The only way my doctor took me seriously is that I kept a log for 6 months of my toilet habits and they finally agreed that wasn’t acceptable - especially being up for hours during the night and not being able to sleep - difficult when you have to work the next day. So start writing it all down, date, time, how long spent on toilet and how you feel - sometimes I feel sick or am sick and sweat - the ask for referral to Gastro specialist.

[Whitesugar]

It's sounds very much like the symptoms I had for over 40 years. Diagnosed last year as Bile Acid Diarrhoea (or Malabsorption). You can look it up. I saw a gastroenterologist, had tests to eliminate any cancer or other serious bowel conditions and then he asked me to do a trial of the medication, Questran. This has changed my life and I haven't had an episode since I started taking the Questran in July 2018, one sachet a day in the evening. You can have the SeCHAT test for this condition, but it is not available in every hospital and as described by jbrking it takes a week, two visits and it is expensive. I knew within three days of taking Questran that I felt safer. It took a bit longer to completely trust my bowels in all situations because of the many, many years of misery, but it has been nine months now and I don't think I will be going backwards.

I did have to suggest to my GP that BAD was a possibility to get a referral to a consultant. I had read about it and also know someone who has it. Not many health professionals are familiar with the condition and you may have to take some literature to support your suspicions, if indeed you recognise your symptoms in the descriptions of BAD.

I wish you well in your search for an answer and a solution.

[sweetsusie in reply to Whitesugar]

Yes!! Questran is another good med for diarrhea!!! I do not understand why doctors are not on top of this for people who suffer from chronic diarrhea!

[Hidden]

I have similar problems. I’ve given up on trying to work out what sets me off. Like jbrking I can go for a few weeks without an attack & then it seems like a build up or something & all of a sudden I get random attacks!!! That’s the worst thing, the randomness, you just never know when it’s going to hit!! I’ve been caught short a few times when I’ve been out and it’s totally soul destroying!! Thankfully I’ve never been in a public place or I think I would’ve just dropped down dead with embarrassment!! 😩 The only thing I take is vitamin B & folic acid tablets as my gp says my low levels of these are probably due to my diarrhoea flare ups as my body isn’t absorbing the vitamin properly. I am due back at the gp this month and I’m going to ask to be tested for bile acid malabsorption!!! Reading online the symptoms would appear to fit!! Maybe you should do the same!! Good luck. X

[sweetsusie]

Welchol and Colestipol are miracle drugs for stopping chronic diarrhea...I had it for years and years...wasn't able to hardly leave my house until in the afternoon. I take 4 tablets a day of Colestipol, and my diarrhea has totally diappeared...also takes effect quite quickly! No waiting for weeks or months! Please google it and see what you think.

[bluelamp]

Thanks so much for all the info! So much to digest and look into! I will be talking to my GP, thanks again!!!

[jbrking]

For all on this thread. My bile salt malabsorption came back as positive so I’ve just started taking questran this week and noticed a difference straight away. Doctor said it is one of those things that gets misdiagnosed, put down as IBS and other things. Still waiting on colonoscopy and biopsy results but during the colonoscopy it all looked pretty normal. So for anyone suffering I would recommend the bile salt/acid test. It’s only a tablet and a couple of scans nothing invasive!