Severe Refractory IBS: I WAS DIAGNOSED WITH IBC... - IBS Network

IBS Network

47,323 members15,525 posts

Severe Refractory IBS

301246 profile image
14 Replies

I WAS DIAGNOSED WITH IBC-C in November 2019. At first I just experienced night pain plus costipation. However as time has gone on, the condition has become so much worse mainly from pasinful trapped gas in the intestines.|I also have lavator ani for which I had Botox injections in the rectum last January. It only lasts between 3 - 6 months so ready to be done again. In fact I am on the urgent list and hope to receive a date soon. While I was with the colorectal surgeon, he suggested that my problem was one of brain/gut axis and that he thought a psychiadtrist may be able to help me. He has made a referrqal but I've heard nothing yet. My GP gives me Diazepam 5mg 2 a day and is not keen to give me Oramorpoh as it's not a drug for IBS. However, one of the other doctors at the surgery has prescribed some for me as I was in such agony. I take as little as poss8ible as it is not good for constipation. My question is has anyone else received successful psychological help for their IBS. I've been told that unfortunately this is a condition where there is no treatment and I feel that the wonderful life I had has gone forever.

Written by
301246 profile image
301246
To view profiles and participate in discussions please or .
Read more about...
14 Replies
FRreedman profile image
FRreedman

I also suffer from IBSc and have been told it is up to me to find a way to deal with it as there is no cure, as such. I am surprised your GP has given you 10mg Diazepam for daily use because this drug is one of the most addictive on the market. It also can cause constipation as can most painkillers as they all slow down your internal response mechanisms. I have also been told that the problem is thought to be brain-gut message-related, but have not gone any further down that route. Please keep us posted and, if you do go down the psychiatric route, let us know how it goes. In the meantime get well, keep smiling and stay safe.

301246 profile image
301246 in reply to FRreedman

Thank you for your post. I will most certainly update you should I go down the bran/gut axis route. It certainly helped when I had a spell with a clinical psychologist about 18 months ago.

Rice333 profile image
Rice333

Hi I have proctalgia fugax/ lavertory ani system 24 hours a day plus lbs .

My GP said there is no treatment , you say botox injections can help how do I go about that please..

I feel for you as it horrible but you need like me to live you life , people don't understand what it's like .

I'm on Gabapentin which is'ant any good. It's about 3 year now ..

But I'm doing the best I can .

All the luck in the world.

Maybe we can help each other.

Hope you don't mine me replying to

You , you are only the 2nd person I have come across with the horrible condition , I'm Andy by the way .

301246 profile image
301246 in reply to Rice333

Hi Andy, On the cdontrary, it is good to hear from fellow sufferers. Referral for Botox went from my GP to colorectal surgeon at local hospital. I agree it is not much of a life living with constant pain and all those goes with IBS. I have lost the wonderful life I once had and often think of ending it all but I could not do this to my family. i hope at least you will be abcle to get some help for the lavator ani but as I say Botox only last 3-6 months,Good luck to you as you soldier on.

Rice333 profile image
Rice333 in reply to 301246

Hi thanks for the replay, you must NOT let it get the better of you , I'm not into meditation stuff but Mindfulness is very good as said I'm not into that stuff but it works ( helps) .You a have family you can beat it , I have learnt as much about ibs & PROCTALGIA FUGAX & LAVERTORY ANI SYNDROME by searching and reading about them .

My wife has been brilliant she is my life .

She has gone on holiday ( UK ) yesterday with her son & family, we surprised her 👌 its not all about me I'm at home ( cats sitting ) I'm fine we live by the sea in Bexhill on Sea.

Please look after yourself & family as I'm sure you will YOU CAN AND BEAT IT .

301246 profile image
301246 in reply to Rice333

Thank you for the encouragment Andy. I coould not carry on without the help of my husband who has now taken over the management of the house. Cleaner employed and hubby does the rest except when pain isn't quite so bad and I do some cooking making some meals to freeze. I have taken Oramorph an hour ago but no change in the pain level. The words from the nurse who I went to see to che check if I was fit enough for an eua, keep ringing in my ears - she said "the condition you have there is no treatment for" !!!!! I use Youtube for pain relief, IBS and other meditations. In fact I have just bought a sleep bluetooth headband which will help me get to sleep in pain. Very best wishes to you Andy.

Orchid99 profile image
Orchid99

Haven't they suggested prucalopride or linzess for the constipation?

301246 profile image
301246 in reply to Orchid99

Yes, I take these drugs, Prucalopride and Constella. Also take 2 Dulcolax and prescribed Quietapine 25mg to help with sleep. It does help in a strange way with the constipation but does not help with the pain. Everyone's sypmtoms are different. I jusdt wish there was something that would help with the severe traqpped gas which oh so painful. My doctor says I have severe refractory IBS and there is no treatment for it. However, I am searching here there and everywhere. I have been under a private nutritionist for 2 years and at the moment am receiving Bioresonance, not sure whether it is helping. though.

Dana6 profile image
Dana6

Hi, you will probably need to take antidepressants. I also have ibs-c and I asked my GP to prescribe me with antidepressants as they do help with the stress and anxiety, because this is a vicious circle. I used to take them when my ibs was better so I know they do help. IBS adds to your stress and stress adds to your IBS as well. I only take the lowest dosage( citalopram 10mg) but I also take cbd oil. I have done a lot of research and it does help- if it is from a good supplier.

Orchid99 profile image
Orchid99 in reply to Dana6

Hi, does the citalopram help with your bowel movements as I understand ssri's are prescribed for ibs c normally as they can help speed up the digestive tract, the tricyclic ones are for ibs d?

Pte82 profile image
Pte82

301246, thiamine is critical for proper function of the brain and the vagus nerve connecting the gut to the brain. Although the first link focuses on SIBO it also applies to IBS and contains visuals of the vagus nerve's connections in the gut for a better understanding. Searching on "IBS thiamine" will expand the subject. As the second link underscores, depression is a possibility from a thiamine deficiency. In addition to thiamine found in foods are three forms that offer heightened absorption and other benefits TTFD, benfotiamine and sulbutiamine. The enzymes created by magnesium are needed to activate thiamine so a deficiency could also result in a thiamine deficiency. In addition to sulfur dioxide are other anti thiamine factors depleting thiamine some of which are found in the last link. Always consult your health care professional before using any supplement.

eonutrition.co.uk/post/thia...

frontiersin.org/articles/10...

chroniclesinhealth.com/inde...

stuttersense.blogspot.com/2...

301246 profile image
301246 in reply to Pte82

Thank you for this most helpful post. As a result I am now taking vit B1 as well as vit B12. I will enjoy reading the links you hzave included. Thanks again.

Pte82 profile image
Pte82 in reply to 301246

Methylcobalamin is the active form of B12 available in fast melt sublingual tablets making it more reliable to absorb.

Palisade profile image
Palisade

I take no meds for IBS. I have had ulcers a couple of times, and was put on PPIs for them both times. The second ulcer resulted in a great deal of anxiety for which I was effectively treated with Lexapro.

You may also like...

Iberogast for severe IBS?

one. I've been diagnosed with severe ibs recently after having the condition for 7+ years. Has...

IBS & Severe Constipation

another. Just wanted to know if anyone has had anything for constipation that really works without...

Severe IBS

see if anyone can help or advise on my current condition, or if anyone is feeling the same really....

IBS-D with severe weight loss

(pretty much manageable). From then till now, I have gone through different kind of treatments -...

Severe IBS D and Bile Salt Malabsorption

part! I'd love to hear from anyone else who has a combined gut issues; I don't know much about BSM...