Severe incontinence: I was wondering if anyone... - IBS Network

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Severe incontinence

Clo23
Clo23
26 Replies

I was wondering if anyone had been offered stoma surgery for their severe Diarrhea. I can’t go out anymore due to the problems, the last 3 years of my life have been mostly stuck inside and I’m only 23. I am on the toilet up to 20 times a day and can never leave the house due to the urgency. I’ve had to quit work, university and don’t even visit family unless they come to me because of how severe the problem is. I am so desperate and have tried all sorts. Medications, diets, Fodmap, I was even bulimic at one point because I was so scared that whatever I ate would hurt me so much. I have had hundreds of tests and they have no idea what’s wrong with me, I am fighting to be allowed a stoma and I would like any advice if anyone else knows anything about this or who I could contact for more information?

Thanks

26 Replies
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Maureen1958

Hi, have you heard of Bile Acid Malabsorption (BAM) also called Bile Acid Diarrhoea (BAD), sounds from what you say, you could have this. I would goggle it and see what you think!

1 like
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Clo23
Clo23
in reply to Maureen1958

I have looked at this before, I’ve had so many tests done that I assumed it would have come up in one of those but I will bring it up at my next appointment to see if I’ve already been tested or not. Thank you!

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Maureen1958
Maureen1958
in reply to Clo23

Are you in the UK?

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Clo23
Clo23
in reply to Maureen1958

Yes

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Maureen1958
Maureen1958
in reply to Clo23

I think you would know if you had been tested for this as, generally, you have to swallow a radioactive pill at a hospital and go back a week later for a scan to tell if you have BAM in the UK.

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Clo23
Clo23
in reply to Maureen1958

Okay thank you. I’ll question this at my next appointment

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FRreedman

There is a worldwide recognised centre for excellence for all things bowel related at St Mark's at Northwick Park Hospital, in Harrow, North West London. They deal with the complete digestive tract, and stomas as well. If your GP won't refer you there, it maybe an idea to visit the hospital and, if you were to have a debilitating attack requiring an ambulance and A&E visit while you were walking past the hospital. think how fortuitous that would be, even though of course it would be totally immoral to think anyone would suggest or contemplate such an action.

6 likes
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Clo23
Clo23
in reply to FRreedman

Haha thank you so much. If I don’t get anywhere with my current gastro specialist I will definitely look into this place. I am so desperate at the moment! Thank you!

1 like
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denvajade

Things to look at are lactose, high fats, and a condition I have is called Dysbiosis. Lack of good bacteria in the gut.

I wish you well I have terrible gut issues along with R A and Fybromyalgia.

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Clo23
Clo23
in reply to denvajade

At first they thought it was just lactose intolerance so we cut it out altogether and I still have issues. I have been on a low fodmap diet before for about 5 months to no avail. I’ve also tried a complete low fat diet all with the guidance of a nutrition specialist and nothing changes my problems! Thank you!

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denvajade
denvajade
in reply to Clo23

It’s likely your food is not being digested, have you taken a tablet that digests fats proteins and carbs? You can get them in one tablet, they are enzymes.

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Clo23
Clo23
in reply to denvajade

I have to be careful what medications I take because of the medications they already have me on but thank you, I’ll look into it!

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David_Atlarge

Hello Clo23

I can imagine home difficult it must be for you! I have been thankfully cured of my SIBO and IBS but at times in the past suffered many debilitating symptoms. I lost my job and was forced in to early retirement.

You have had some sound advice already on here but may I add my 'two-penneth'. Surgery is a big step to take and often has side effects that you maybe stuck with for the rest of your life. It is all too often offered when lifestyle changes would be far more appropriate, and effective. Unfortunately our health care system centres on operations and/or medication, which often are symptom centric rather than cure related!

I must hasten to add I have no knowledge of Stomas.

I can recommend the Gastroenterologist who treated me. He is a specialist in IBD/IBS/SIBO. He is based in Torquay and works in both the NHS and private sector. You will need a referral to see him. He will consult by telephone if distance is a problem. You would need to travel if Endoscopies and the like are needed but I am sure he will review what you have had to date.

Please PM me as I cannot use his name in open forums because it amounts to a sudo-referral and that breaks his NHS rules...apparently!

This is a genuine offer and I have not financial or commercial connection with the clinic, I just have to abide by the NHS's arcane rules!!

Best of luck!

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Clo23
Clo23
in reply to David_Atlarge

Hello and thanks for your help. Torquay is a very long distance away from me and due to the problems I can’t even travel 10 minutes down the road but thank you. I have been researching surgery a lot and I am fully aware of all the risks side effects and changes this would make to my life but as I can’t even leave the house to walk 2 minutes down the road without having an accident I fully believe as does my family, that the pros outweigh the cons. Thank you!

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David_Atlarge

I presume you have had faecal calprotectin tests for Crohn's and Colitis? Biopsy for Celiac disease, or a blood test?

If not it might be a starting point as these are major IBD disorders that maybe treatable if the cause is understood

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Clo23
Clo23
in reply to David_Atlarge

Hello yes I have had all of those, they thought it was UC until they gave me a flexible sigmoidoscopy and found no problems. They have absolutely no idea at the moment what is causing such severe problems for me!

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David_Atlarge
David_Atlarge
in reply to Clo23

I cannot begin to imagine how difficult it must be for you!

Good luck!

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Clo23
Clo23
in reply to David_Atlarge

Thank you!

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sweetsusie

Try any of these 3 drugs: Welchol, Colestipol, or Questran. They will all stop diarrhea in it's tracks. I take Colestipol (2 in the morning and 2 in the evening) and I now have my life back. Like you, I basically lived in my bathroom and never went anywhere because of my problem.

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Gelfin

Did anything significant happen 3 years ago?

What are you eating now?

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Clo23
Clo23
in reply to Gelfin

No nothing. I’m eating the same things I always have, I’ve tried multiple diets with a dietician and nothing has changed apart from my weight fluctuating

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Gelfin

What are those things? :)

Which diets?

If you don't want to go into detail here, feel free to message me.

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Clo23

I’ve tried going to lactose free at first and then gluten and then both. Then I low fat, low fodmap and then more specific ones with the dietician based on certain things like sodium, sorbitol etc. I’ve tried loads that’s why my doctors are having such a hard time finding what the problem is.

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IBSNetwork
IBSNetworkAdministrator

Sorry to hear that you're struggling. We recommend speaking to your GP. For information, help and support about IBS please get in touch theibsnetwork.org

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Marygulliford

I wish you lots luck. My diahorea is better these days and it was bad during my working life. Accidents galore! Push for stoma - you need your life back, or any other solutions consultant may have xx

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Clo23

Thank you, it’s nice to know I’m not alone it’s makes me feel more normal! Xxx

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