Diarrhoea .........

[247sweet]

Not a nice post I'm afraid.

I want to ask you if anyone else suffers with this terrible side effect? I was diagnosed more than 15 years ago, and ever since I have suffered with really bad diarrhoea, my doctors have done LOADS of tests to see if there is something else going on, there isn't. There is often little or no warning and can obviously be terribly embarrassing. It's not constant for me, but a few times a week I'm caught short. Am I the only one?

I find it quite limiting as I'm a bit scared to leave the house sometimes, I use loperamide and coedine which help sometimes but don't cure the problem.

I used to get very nauseous too but this has improved over the years.

It's not easy to talk about embarrassing side effects,but if I can't ask here........

[pauldecle Partner ForumLink]

HI Sweet,

Thanks for your post and please do not worry I have been there so I know how distressing this can be. Firstly what medication are you on? Have your medical team ever changed your treatment?

Chronic diarrhoea like you are experiencing is something I associate with older antiretroviral medication. I am going to keep this short as it would be better to know the answer to these two questions.

All the best for now

Paul

[247sweet in reply to pauldecle]

Hi Paul , my Meds have been changed in the past, probably four or five times. At the moment I take nevirapine and kivexa, which is abacavir/lamivudine.

I had terrible diarrhoea when I was diagnosed with AIDS back in 1999 ish, and basically it's never really gone away. It got much worse when I was initially given a combination which included azt, I eventually got that combination changed which helped but not entirely.

I can't eat high fibre foods, juices or smoothies......... Taking a probiotic can help, along with coedine and loperamide.

[pauldecle Partner ForumLink in reply to 247sweet]

Hi Again,

I think this is beyond my level of expertise so I think it might be helpful for you to talk to on of the team at i-Base.

You can call their treatment helpline Mondays, Tuesdays and Wednesdays 12:00 - 4:00 on 0808 800 6013

Calls are free in the UK from land lines and most mobile networks including the main six: 3, O2, Orange, T-Mobile, Virgin and Vodafone. Calls will not be itemised on your bill.

All of the treatment team are living with HIV so you can talk freely with them. You can also ask questions online if you would rather, the link to the online Q&A pages is i-base.info/qa/ask-a-question

Sorry not to be able to help you more directly.

Kind Regards,

Paul.

[phil123456789]

Hi, i have same problems since 15 years too.3 years ago my daily loperamid were up to 20 each day in combination with novalgin, buscopan...

After severals tests and changed very often haart i met another doctor. He tested again, and he found a damage at thin/small bowel called lymphangiectasy.

It is irreparable but since then i take morphium every day, no pain anymore and side effect is opstipation.

For me it is new life since then,

Hope this will help you

All the best

[247sweet in reply to phil123456789]

Oh thank you for telling me that Phil. I will see if that could be the same for me, and ask for a test if so. How did they test for yours? Was it a scan or something?

[phil123456789 in reply to 247sweet]

Hi, after

thin colonoscopy and biopsy they found damaged lymphatic tissue. Reason could be the medication 15 years ago with Lamivudin, Azidothymidin/Zidovudin, Lopinavir and Efavirenz for 5 years and Cotrimazol every day.

And result is every food with fat, raw vegetable and fruits etc is difficult for thin bowel.

Important is rich in protein food. My bowel only can absorb 35% of protein, mainly i eat cottage cheese, chicken etc

Hope this helps you

[Trotski]

This is something I have had to one degree or another for many years but much worse with a regimen I was on 15 years ago. I have the added joy of not tolerating opiates nor opioids and loperamide is an opioid; they make me extremely nauseous. I once was on a two and a half hour flight and took loperamide as a prophylaxis only to end up vomiting the entire flight, freaking out the other passengers who were worried I had Ebola and the flight crew who thought I was a drug mule and one of my packets had burst. I have found that Tums or something similar with calcium carbonate can add a bit of body to and firm up my stools. At this point in my life I have had far too many incidents where I have lost control in public to be embarrassed and simply carry the means to clean up in a public lavatory and a change of clothes. Cheers!

P.S. Gallbladder issues and other things where fats go undigested to the lower intestine are notoriously difficult to detect and can cause similar episodes.

[Trotski in reply to Trotski]

Also, even tiny amounts of detergent residue can affect the polarity of the lining of the intestinal tract, again, causing things to pass through undigested then the flora in the lower part will ingest that matter , producing gas along with loose stools.

[247sweet in reply to Trotski]

Thanks for that info Trotski. Being allergic to opioids sucks.....?