Bile salts diarrhoea
Posted , 9 users are following.
I have Crohn's and had a small bowel resection just over 3 years ago. Since then my Crohn's has been in remission and life should have been better except I have been left with bile salts diarrhoea. I have just re-tried Questran Lite but I just don't get on with it. I am at my wits end and going away for Xmas and don't want it to spoil things. I don't eat if I have to go out, don't enjoy meals out, had a near miss on public transport and I buy Imodium in bulk from the USA and take a minimum of 4 daily, more if I need to. Any suggestions or advice, medicines or dietary, I have had so many near misses I feel it's a matter of time before the unthinkable happens
0 likes, 16 replies
Clancabell anna64644
Posted
Hi I'm the same as you it's a blinking bind at times and limits the things you can do! I too had a resection and a stoma, since reversed, I can go 6-10 times a day, my bottom gets so sore as well!
So I'm sorry I have no advice as you seem to be doing everything you can to slow it down!
All the best to you
Clare
anna64644 Clancabell
Posted
Hi Clare, I almost wish I'd had a stoma. The worst thing is that I thought the urgency was just a settling down phase, it was months before a hospital follow up told me why. Yes I get really sore as well if I have a bad day, it really gets you down doesn't it? Thanks for replying and all the best to you too, Annabelle
nannylin anna64644
Posted
I'm so sorry you are suffering so much. I have had the same surgery and used Questran since and apart from a couple of days a week of unpredictable stomach grumbles and dashes to the loo I have been fine. Maybe it's the lite one that isn't agreeing with you have you tried the ordinary Questran it's got different ingredients. No miracle cure to offer but hugs.Hope you get it sorted soon and can enjoy Xmas.
HellyE anna64644
Posted
Sorry to hear about your troubles - it's not fun is it?
I had similar surgery but just a year ago & do get sudden urge to need the loo. I struggled with questran too & it didn't really do anything for the excess wind & gurgling I was struggling with. A friend of mine suggested I may be lactose intolerant - indeed even if you didn't think it before bowel surgery is a common cause of secondary lactose intolerance, presumably because they remove some of the region that produces the lactase which digests the lactose. Anyway, 4 months now using lactose free products & lactase supplements if needs be & much better. I have also tried to limit wheat based foods to one meal a day & generally eat a low fat diet on the basis bile is released in the first place to digest fat.
I have just come back from a break in Barcelona which I discovered has a lack of public toilets, however, one Imodium a day meant no emergencies!
I hope you can achieve some control before you go away so that you can travel in confidence & enjoy your trip.
anna64644 HellyE
Posted
Before my op one Imodium used to be enough but not now. I did try lactose free milk and took yakult daily and I've seen dieticians and nutritionists, tried FODMAP etc. My gastroenterologist can't help with any more suggestions and I just have to manage it. The only solution I can see is not to eat but of course you can't do that permanently! All I can do is try not to let it rule my life. In fairness it is much improved since the op but not enough for daily comfort
chrissie52 anna64644
Posted
I too had the same problem. My GP in the UK swapped me to a tablet called Colesevalem which absorbs the bile acids and it is much easier to take, and doesn't make me feel nauseaus. I had my small bowel resection nearly 20 years ago, and apart from a repair nearly 10 years ago have mostly been in remission. The other thing I was given was a diet. This restricted dairy, (easy to substitute with soya, almond or coconut milk these days) gluten (lots of gluten free food in cafes and the shops too), and not eating vegetables that produce a lot of gas like cabbage, or beans which make the bowel irritated. I have found it helped to reduce the amount of bile acid produced, and the painful discomfort. The number of near misses (and misses) I had before was awful, but now I manage really well. I only take Imodium if I am going somewhere for a long time where toilets might be limited, I don't need it on a daily basis. Hope this helps.
anna64644 chrissie52
Posted
I'm in Oz and as far as I have researched Colesevalem isn't available here more's the pity. I will do a bit more research re dietary changes and see if it helps, thank you
gayle14m anna64644
Posted
You can ask your gp for packed ensure drinks and make them up whilst you're away. Rather than carrying liquid. Hope you enjoy your holiday. I've just found out that we are allowed not extra 10kg if your flying for medical purpose put you need a letter from GP and separate bag but all your meds together.
Alfielefoo anna64644
Posted
I was just about to post about post resection diarrhoea!
i also was given little advice on foods to eat etc and I had a right hemicolectomy 3 weeks ago. Yes there is relief from the strictures, but...I have to run to loo with little warning. It's a bit disheartening to read that you all have this even years later.
nannylin Alfielefoo
Posted
Don't be too disheartened there are probably loads of people who have no problems at all. It's early days for you and the Questran may work fine. I still have the odd bad days but it's so much better than it was. Take things easy and give yourself time to recover. Good luck
anna64644 Alfielefoo
Posted
I wasn't given any indication other than I may wake up with a stoma that this would be the result after surgery and I wasn't given any food restrictions in hospital or for when I went home. Out of habit I lived on bland foods for a few weeks. Since the op I can't tolerate orange juice or anything tomatoey. Hopefully it is still early days with you and things will settle down and become more manageable and yes it is disheartening when you think the op has solved an issue and you are left with another to cope with.
HellyE Alfielefoo
Posted
Give yourself time.....
For me it's almost a year & to be honest most days are ok. When I think back - 3 weeks post -op I didn't believe life would be anywhere near normal again. The worst days are when I'm having a break in routine & I'm sure it is partly psychological but I have now learnt that one Imodium will get me through. I have just seen a new consultant today & he's quite happy with how I am.
Hope things settle for you soon.
Alfielefoo anna64644
Posted
and I hope everyone is ok and Anna you get some relief . X
Alfielefoo anna64644
Posted
I didn't realise I don't think, what an issue the surgery is. I sort of compared it to having my appendix out which as you know, it's nothing like.
i hope you can get some relief. The bland diet becomes the norm and you get sort of scared about branching out.
reading others stories, yes, 3 weeks is early days and maybe I should be a bit more patient!
Carolla anna64644
Posted
When I had surgery 32 years ago there was hardly any advice. I did however have a brilliant GP who told me to regard my gut as that of a baby and wean myself gently back onto food. Which I did. There are some things I still can't eat easily, all the healthy stuff like salad, crunchy vegetables, whole grain bread, but jam doughnuts, no problem. I also made a pint of live youghurt every day for nearly a year. I could eat fruit, stewed and stirred in and I always had a small helping just before a meal. I can't remember the name of the live culture I used back then but the only sugar I added was just enough to make the yogurt. Good Luck, you'll get there.