Bile Salt malabsorption

[Sam_90]

Hi don’t know if anyone can help I had bowel surgery around 3 years ago I had part of my small bowel taken away to treat my Crohn’s disease and since that surgery my life has been turned upside down I now have BAM and am going to the toilet upto 8 times a day and a few times during the night I now suffer from chronic fatigue from the diarrhoea I was put on Questrian light but suffered horrible side effects. I went to see my GP and he point blank refused to give me colesevelam and told me he couldn’t prescribe it without the consultants say so I managed to get my IBD nurse to prescribe it for me my GP still made a fuss when he had to put that on my repeat I was treated so badly by the doctors all because I asked for this colsevelam I am now taking it and it works so well to the point I am only visiting the toilet once a day and it has stopped me having accidents which was so humiliating but I am now having terrible migraines and there crippling I don’t know what to do? Do I put up with the migraines ? I’m nervous to even tell the GP I am getting migraines as I really had to argue to get the colesevelam I am just so tired of fighting with doctors

[Eliana5]

Have you tried a colon and rectal specialist rather than a general practitioner especially for Chron's disease. The ones I saw were not dismissive. This is something since you have lost a part of colon..maybe someone more specialized as a doctor or gp is really not specialized in this area. Did you have a Stoma bag/Colestamy? Sorry for My spelling..basically a bag you wear to collect stool? My next door neighbor has Ulcerative colitis. Has to wear a bag. I can't remember what medication she is on..but I do know she said she has to eat a lot and go to the bathroom a lot. The medication she is on..must be great because she is always eating a ton of pizza and McDonald's big Macs. I have never heard of the medication you are on? Have you "googled it" to see what side effects. It is a Doctors job to listen to you, not be dismissive, and if your medication is not working or giving you migraines..I would search for a different Doctor that will help you more and a better bedside manner. Maybe a Gastroenterologist or Colon and rectal specialist. I hope others chime in with the same condition. I have chronic and severe constipation to where I don't know how much more I can take and have begged to have my Colon removed.

[Harley1020 in reply to Eliana5]

Hello, in this thread, I noticed you mentioned about chronic constipation. Have you tried Ortis, Fruits & Fibres Regular cubes? I buy mine from Holland & Barret but pharmacies sell them as well. A natural way to relieve constipation. I have IBS C and have tried lots of different medications and natural remedies and this small cube works for me. A whole cube was initially too much for me as I was on toilet over 5 times in a day, so now I have half in the morning and half in the evening to keep me regular. Hope this helps.

[Eliana5 in reply to Harley1020]

Unfortunately..fiber only makes things worse for me. I have a very weak Pelvic floor. I'm unable to have a bowel movement on my own. Fiber bulks up stools..I do understand..but there is no need for it if I am unable to push it out. The only thing that works for me is Senna. A stimulant laxative. Not the best option I know but it's better out than in. Thanks for your kind reply. Have a blessed day. 😊

[Eliana5 in reply to Harley1020]

I forgot to ask do you break a cube in half? Do you take it in the morning once a day..or every other day..or twice a day? Do you also have a weak pelvic floor? Or have a bowel movement on your own? I tried every form of fiber natural or others but nothing works. I also have slow transit constipation. I'll also Google this. I'll try my pharmacy and Amazon..I live in the United States. Thanks for any more info..it's always worth a try..

[Harley1020 in reply to Eliana5]

I have slow transit constipation. I cut my cube with a knife into three separate bits taking one bit at breakfast and the other at tea time. Initially, I tried a whole cube then half a cube, twice a day but it was too much. Find what suits you and it really does work. The other natural remedy is dried prunes - I used to have three prunes, twice a day, again in the morning and evening. Fingers crossed one of these natural remedies works for you. Good luck

[Whitesugar]

I am so sorry you have an unsympathetic GP. You do need to tell someone about your migraines. Headaches seem to be a side effect of bile acid sequestrants, but migraines are different. You could start by having a word with your pharmacist to find out what else is available for BAM in your area and then make an appointment with a different GP. Do you think you could have been sensitive to the aspartame in Questran Light? There is an original version with no artificial sweetener, but it seems difficult to get hold of where I live.

I believe Colesevelam is not licensed by NICE for treatment of BAM (it is for the treatment of high cholesterol) which is why it has to be prescribed initially by a specialist. If this was not explained to you that is rather insensitive.

[Lola1990]

Hi sam. I have had part of my small bowel removed 5 yrs ago due to tumours . I am taking colestid orange (colestipol) . I take 2 sachets 4 times a day , Only side effects I suffer is occasionally wind . I have a bowel specialist who is so helpful who I see every 3 mths I would go back to your GP and tell then to send you to a specialist who can help you as you shouldn't have to suffer like this

[Squirrel83]

Sorry to hear you're suffering. I'm going a bit off topic in asking about small bowel resection. I'd part of my jejeum taken away 3 years ago due to cancer and this last 6 months I've suffered from varying bowel movements. Between being constipated and I don't go for days to days of needing to run to loo with urgency. I have been up and down to doctor with my worries and been told its constipation. My worries include mucus that's quite viable. I'm terrified of it being a repeat of tumors. My mind was settled a little after a ct scan and I'm going to get a repeat colonoscopy as it's been a few years from my last.

My query is those of you that have had removal of small bowel, do u get pains (sharp stabs, nips, pulling) near resection site?? I regularly get sensation of something sharp poking straight through suddenly or dragging/tearing sensation. Also I'd get areas on abdomen that feel bruised to the touch, then a few hours later it's gone, or moves elsewhere.

Any reply would be appreciated. My doctor thinks I make this up and tells me I'm anxious. Yes I do suffer with anxiety but these pains etc are real.

Sorry if I've rambled on a bit

[MsRivet in reply to Squirrel83]

Hi

As I think it is pretty rare for people to have to have a resection due to IBS you might get more answers in one of the online groups that are aimed at people with IBD (it is a common surgery in Crohn's Disease) but that also welcome people who have/had bowel cancer. I can recommend a good FB group if that would help?

[Sam_90 in reply to Squirrel83]

Hi I had only a small part of my small bowel removed that was because the Crohn’s has got som bad but I do sometimes get pain stabbing pains were my surgery scars are my GP tells me I’m just being anxious but I know what I’m feeling mine did calm down after a few years after the surgery it doesn’t bother me so much now but I would speak to your consultant about it if it’s too painful they should give you something I was given diazepam and that worked better for me than painkillers relaxed all my muscles really helps with that type of pain hope that helps

[sweetsusie]

I take Colestipol for my chronic diarrhea, which is now gone due to this wonderful med. I wonder if you switched to that or Welchol if it would make a difference. Ask your doctor and try another bile acid sequestrant, IE: Colestipol or Welchol. Worth a try...and I agree with you..I have my life back due to these meds. Good luck..keep us posted!

[sweetsusie]

Oh...also, Sam_90 - I take Colestipol in tablet form: 2 tablets twice a day. Maybe the tablets would be better....?

[Sam_90 in reply to sweetsusie]

Hi I have been given cholestagel (Colesevelam) I really had to push my doctors for this to the point I had an argument with my GP they were arguing over the cost of the tablets doctors made me feel awful asking for the stuff got it now problem being I am getting terrible migraines and nervous now about going back to the doctor and telling him after making such a fuss to get them in the first place

[sweetsusie in reply to Sam_90]

I don't get the migraines while taking this med. (colestipol). Couldn't hurt to tell him aout the migraines and tell him you want to try another med, ie: Welchol, Questran, Colestipol.