Redundant colon anyone?

Two years ago I started my hydroxycarbamide regimen for ET and at the time I was a sveldt 54 kg. Now 2 years down the track not only have a added 5 kg to that number, but have adopted a 'balloon' belly, which is uncomfortably bloated. Thankfully there is no pain. My specialist is not keen to change meds....seems a bit late now. I have already developed this redundant colon in just 2 years. I learned this after my recent and first colonoscopy.It was a more difficult procedure due to the twists in my colon, and took about an hour.

I'm trialling different diets - high fibre/low fibre and restricting calories, but it's like hitting a brick wall. Psyillium works well for me for regularity and I am leaning to loose clothing to camouflage.

My specialist has offered a referral to a dietician but does not inspire much hope/enthusiam in that department. I'm 70 so the figure issue is not such a huge problem but I would like to stop/ reverse the weight gain. I have always been keen to keep a trim body with exercise and a healthful diet.

Don't get me wrong, I appreciate the benefits of the drug in maintaining a low platelet count and improving my longevity, but find it difficult to deal with this negative 'weighty' side effect.

Thanks for reading and any comments/advice. Wishing you all the very best for the New Year.

[Banjoswami]

Bobby, you might read up more on triphala. The third of a teaspoon morning and before bed works for me. I’m 70 and always been thin. CALR with ET.

[Banjoswami in reply to Banjoswami]

What Are the Benefits of Triphala?healthline.com/nutrition/tr...

[Nikon7]

I too experienced the little “Buddha belly” on HU, even when using various probiotics. It decreased about 4-6 weeks on Besremi and I’m still rotating probiotics.

[souplover]

Hi, Unfortunately, I can relate. I'm still fairly slim but my belly is bloated - and I hate it. Worse, I've developed lactose intolerance and difficulty with some vegetables. (I'm a vegetarian.) I'm convinced that my problems developed after a few years on Hydroxyurea.

I had been told many years ago that I had a redundant colon, so I can't blame that part on the HU.

I ended up speaking with two different nutritionists- and it did help me. One of them recommended a course of antibiotics for 'bacterial overgrowth' in my small intestine? I may have the intestinal location wrong. She also told me foods to avoid, basically FODMAP foods + soft cheeses (because of the lactose).

All I can say is that I'm much better than before in terms of intestinal problems.

However... my belly is still bloated. Not happy about that at all.

For constipation (which is an issue with redundant colon), I try to drink lots of liquids and eat fiber. I also take two medications to avoid constipation: Amitiza and Dicyclomine.

Hoping something in there helps others!

[Hidden in reply to souplover]

I'm taking a daily probiotic and following a Fodmap diet, so at least we're on the right track there. I've had great results with a daily11g psyillum in at least 500ml water.

Thanks to all for your comments.