I've made an appointment to consult with a visiting gastroenterologist for my permanent belly bloat and weight gain (about 4 kg over the past 2 years). I have a hunch this has been caused by the hydroxycarbamide. I'm on a low dose of 500mg/day now and platelets are normal. The belly however refuses to budge. This is frustrating to say the least as I am still a very weight conscious person and have been all my life.
Over the next month I'm embarking on a strict FODMAP diet to see if that helps. A recent colonoscopy showed a tortous/redundant colon and I think ?? that has only been an issue since commencing hydroxy treatment. I think there could be a connection, so I'm keen to find out. I'm hoping the GE will be able to help re suggesting a change in meds or diet or other miracle. I haven't been able to convince my haemo to change meds so far and sadly there is only the one consultant in town.
Is there anyone out there in a similar situation or had successes with a GE?
It is definitely worth doing the GI consult. The GI doc may be able to give better advice about the redundant colon and impact on medication choices. Perhaps it will help support the case you are making for a change in meds.
I’ve read that Dr Valter Longo is excellent for his views on diet and cancer etc. Might be worth listening to some of his YouTube’s 🌸 Best wishes and I hope you find a solution.
All to familiar with hu belly weight gain. Heamo says it's not the meds I disagree I lost the weight and belly on peg but couldn't continue on that. My options were hu or Anagrelide. Hoping other meds come along. Maybe if the Drs took hu the would understand some of the effects instead of being dismissive....
Hello Bobby, I have been on HU for 20 years now and have the same GI issues and constipation too ! ( oh joy ! ) I am also getting severe arthritic joint pains…I think this may all be down to HU, but the last haematologist I spoke with didn’t think so ! I am gradually reducing my HU over time, as taken 1000mg per day for a long time and hoping to try different medication at some point. Would be interesting to hear the result of your consultation. Good luck.
I have been on HU for 15 years. Several years ago I became severely constipated and I went to a gastroenterologist. I had a colonoscopy/endoscopy and he said I had a spastic colon and IBS. I found a special diet on line called Gaps and it cleared me out in a week. I also lost a lot of weight which I couldn’t afford to lose. It’s not good to be on it too long. None of really know if HU are the cause of our other health issues.
Many thanks to all your encouragement and support. I will explore the Gaps diet and Dr Longo's blog. Hopefully a switch in meds will be a big help. Will keep you in the loop
I have dealt with severe bloat as well and I know its because I have been on Hydrea (because I did not have it before). I started taking PURIUM probiotics and their daily green drink in the morning and I'm happy to say I'm regular again. It took about 2 months. This is not a sales pitch, just works for me. I have tried soooo many probiotics. Obviously fiber and lots of water is key, but I don't think you need to go extreme with your diet. Best of luck! ishoppurium.com/products/bi...
For what my 2 cents worth is worth 😌 I've been drinking Whole leaf Aloe Vera juice before bed, for years. Not only does Aloe help with constipation it also places the body in a Ph state. It will also help to heal the mouth ulcers that are often a frequent side effect of HU. I do take a handful of supplements before bed with the Aloe, which include a probiotic and some digestive enzymes, as well as 2-3 prunes! Hate to be constipated!!
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