Hypersensitivity IBS / IBSD - A potential solution

[Ladyx]

Hi all, I've been a lurker on various gut related forums for a couple of years now, but now I feel I have something useful to share, I wanted to make a first post.

Since a bad bout of food poisoning in 2006, I've suffered from what has been variably described as "IBS", "Bowel function disorder", "Visceral hypersensitivity/hyperalgesia" and lots of other ways of saying "your gut doesn't work right, it over-works and over-reacts and causes you a lot of pain but we don't really know why".

I've tried the following medications, with varying success:

- Loperamide - only really a stop-gap solution, but temporarily relieves D symptoms when they occur

- Spasmanol - great for pain but gave me intolerable indigestion and heartburn

- Buscopan - no effects on me

- Simeticone - works well for trapped wind pain

- Pro-biotics - made me worse

- Peppermint oil/capsules - gave me 'wonderful' peppermint diarreah lol

- Codeine - great for pain and has a constipating effect but obviously can be addictive and diminish in effectiveness once you become used to it

- Amitryptaline 75mg - works fantastic for pain but doesn't affect urgency

However, I recently met with a new gastro consultant who told me about studies into the effects of serotonin in the gut - that it is thought now that an infection in the gut can trigger over-production of serotonin which causes hyper activity in the gut, and the potential of a gut-specific serotonin inhibitor called Ondansetron in treating such conditions (see gut.bmj.com/content/early/2....

Although the drug is officially licenced as an anti-sickness drug, he has prescribed it off-licence for me to try as a means of treating my stomach problems.

I have been taking 8mg 2 times daily for almost two months now (still alongside Amitryptaline). And, after nearly a decade of absolute horror due to my gut, the impact that this new medication has had has been incredible. Aside from a minor side effect of occasional indigestion, and having to find the right balance of dose (supposed to be 3 times daily but found this caused constipation) I am almost symptom free.

I wanted to tell people about this, as I was looking for help for years and years and know I would have wanted to know about this had someone else found out about it as a treatment. It is not a drug currently licenced for gut problems, so unless your doctor has read these studies (and unless they are a gastro specialist and keep up to date with research they likely wouldn't have) then they won't be aware of its potential use.

[Hidden]

This sounds interesting. Thanks for the post.

[tigga]

very interested in your post,may i ask if you had i b s a or ibs c ? good to hear youre almost symptom free!

[Cazbob21]

Phoned doc about water infection told about ondanssetron she said not to try it until been on diabetic course

[Ladyx]

@Tigga, I have "visceral hypersensitivity" which is pretty much a convoluted way of saying high pain, high sensitivity and fast transit - Or IBS-D predominant, with alternating C.

[Mreen in reply to Ladyx]

Am I right in thinking IBS-D is Crohn's Disease?

[Ladyx in reply to Mreen]

No, IBS-D is IBS with Diarreah predominant symptoms. I've found a lot of people use the extra letter D for diarreah and C for constipation. It can help a lot when looking for specific advice about managing symptoms and things

I think you're thinking of "IBD" which is Inflammatory Bowel Disease and includes things like Crohns and Ulcerative Colitis.

[Mreen in reply to Ladyx]

Many thanks for reply.

No I'm not thinking of IBD particularly (never heard it called that. No it's something a friend's daughter had, rather the ulcerative colitis. She seemed to have been born with it. Very ill almost died. I'm talking about 35 years ago!) I'm concerned that my friend's daughter may have talked her mother into thinking she has the latter!

I'll stop rambling but am grateful for the info. All the A's B's and D's are enough to confuse anyone.

[Whoopdedoo]

Thanks for the interesting report. I have IBS-D for 30+ years now and diagnosed in hospital.

I found the original report which was interesting especially as it was done by a hospital. I tried a different product to Imodium, which I can keep some sort of control with, which left me with the most troubled sleep and dreams like another daytime. How did you feel in yourself? Do you think it makes a difference to your person like a sedative would? And can it be taken a a long term solution?

[Ladyx in reply to Whoopdedoo]

I've never had any trouble like that from immodium, or its generic form loperamide. I was concerned about this new med, due to it limiting serotonin, however I have researched it further and found that it limits it only in the gut and not the mind, so gave it a go and I've been on it a couple of months now and found no side effects other than some constipation, which has been fine since I lowered the dose. It has no sedative effect. Amitryptaline, which I also take, did have a sedative effect at first but once I got used to it it no longer does. Also, to get around the drowsiness, I took it at night before bed. That way the drowsiness was an aid to sleep, and had wore off by the time I got to bed

The thing with side effects is they are not generic and affect everyone differently. Wh

[Whoopdedoo]

Thank you. Well written. I will bring this up at my review at the doctors in June. Keep well.

[Hidden]

I have found amitriptyline and pregablin (which I take for nerve pain) has helped with the frequent bowel movements I had in the morning.