I'm 70 and had my first colonoscopy last week. It revealed a redundant/tortuous colon with significant looping, but no polyps. It was a difficult procedure and took close to an hour according to the report. I'm happy I felt nothing.
I now have a better understanding as to a possible casue for my belly bloating, which I should add, only appeared ( along with a few extra kilos) after my biopspy in January 2021. I have struggled to lose any weight since on the hydroxy, and now suspect that it could have caused not only the bloating, but also the redundant colon.
I've done a little research and there may be room to tweak my diet to a low fibre one and focus on natural supplements for bowel regularity - a flaxmeal, psyillium and chia seed cocktail + at least 2 lt. water daily. My specialist is not at all keen on changing meds, though I suspect it's a bit late for 'repair work' as the extra looping in the large intestine won't miraculously disappear.
I have no symptoms, apart from a carrying my ballooned tummy, but would like to keep my weight and balloon size in check. Can anyone empathise with my situation and offer suggestions/comments please?
Sorry to hear the news about the GI issues. Given the potential for hydroxycarbamide to cause GI issues like constipation and additionally weight gain, it would seem that reviewing your medication options would be a good idea. Hydroxy compromised my intestinal endothelium, causing chronic constipation, something I had no history of. Given your situation, suggest reviewing you options with your entire care team. Your gastroenterologist and hematologist may have different opinions on this issue. Suggest getting a second opinion from a MPN Specialist if you do not already have one on your care team. mpnforum.com/list-hem./
There is some evidence that hydroxy can also compromise the intestinal microbiome. If you are looking at more natural approaches to managing you GI system, suggest consulting a knowledgeable professional about probiotics. My Internal Medicine doc does recommend them for me. I also be sure to include fermented foods and prebiotics in my diet. Note that many doctors are not well trained in nutrition, diet, and supplements. that is why my GP referred me to an Integrative - Functional medicine doc. These docs are a wonderful asset on your care team. ifm.org/find-a-practitioner/
Hi Bobby, I too had a colonoscopy a year ago and was told by the doctor that I have a very tortuous colon with no polyps. I have had PV jak2 for over 20 years, am now 62 and have never taken drugs such as HU for any sustained period of time. In fact have been taking 2 aspirin a day and get phlebotomy's every 3rd month or so for years. I work out daily, try to eat healthy and keep my weight down.
Maybe the HU is not to blame but rather just genetics. My doctor recommended taking Meta Mucil daily which I do and have for the first time regular morning bowel movements. The fiber seems to greatly help! Wish I had known this earlier in my life. I was actually advised to take two packets of Meta Mucil a day but one seems to do the trick. Don't think the HU is the prime culprit and you an solve the problem easily with a supplement such as Meta Mucil found at most stores. Good luck.......Kerry
I, too take HU ( for PV) and have continual issues with stomach cramps, diarrhoea ( and constipation ?!) and as you call it ' a redundant bowel'.
I saw a dietitian at our local cancer center who recommended low Fodmap foods for me ( plenty online about this).
I cannot have a variety of items eg stoned fruit, certain vegetables etc owing to their effect on my constant issue with diarrhoea, which I didn't have at all before HU.
I eat little and often as big meals cause too many problems for me. Early satiety.
I drink lots of water and I take Imodium Instants (loperamide) several times a week.
Please do not think that the above will suit you. Check with your doctor as I know that one size does not fit all.
Ooh so sorry to hear all this news re constipation with hydroxy. I have been on 1000mg each day for 4 years, but have never suffered with constipation or bowel problems (touch wood) I do eat lots of veg pulses lentils nuts and bran flakes at breakfast with a sprinkling of organic linseed, and drink lots of water. I do hope you get it sorted lots of luck and Merry Christmas everybody x x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Headaches, Bloating and Weight Gain...sound familiar?
Hydroxycarbamide 
Hydroxycarbamide 
