Unremitting Intestinal Issues

[BluePeony]

While I don’t participate here often, I always enjoy reading about your experiences with MPNs. I’m 3 years into my PV diagnosis…73 yrs old. I’ve heard that belly issues can be a problem so I was wondering how others are handling it. I suspect I might have ulcers as my bouts with pain, nausea and all the symptoms of a bad gut sometimes last a week. During those times I simply can’t eat or sleep. Any ideas?

[Mwalimu]

Do you take aspirin? If so, is it enteric-coated/gastro-resistant? Sallie

[BluePeony in reply to Mwalimu]

Yes, I take low dose, coated aspirin daily. I realize it is important for keeping blood thin and reducing inflammation, but I was wondering if it also is hard on the belly.

[hunter5582]

What you are reporting is quite common. At the core MPNs are inflammatory disorders. Dysregulation of the JAK-STAT pathway does more than drive hematopoiesis. It also drives up the production of inflammatory cytokines. this is thought to be responsible for many of the secondary symptoms we experience. I have experienced GERD, gastritis, esophagitis and have a hiatal hernia. This is all inflammation related.

The meds used to treat MPNs can also have adverse GI effects. Aspirin has well-known GI effects, even the low-dose enteric coated. If you are on hydroxyurea then that med also can have various adverse GI effects. Pegasys and Jakafi can both cause nausea. If a med-related adverse effect is involved, then there are ways to counteract some things. Many docs will prescribe a proton pump inhibitor (e.g. Nexium) to counteract the effects of aspirin. Be sure to talk to your doc about what you are experiencing.

Hope you find relief soon.

[BluePeony in reply to hunter5582]

Thanks, Hunter. I’ve been on a low dose of HU for 3 yrs. My specialist told me a GI visit is in order. I had a work up done when first diagnosed, at which time everything was ok, and feel reluctant to visit again, but the pain and nausea have become intolerable. I’ve been on a low I guess it is time to bite the bullet. I appreciate your input.

[hunter5582 in reply to BluePeony]

Definitely follow up as you are in pain. Something is not OK. Whether this is related to the MPN, the medications, or something else needs to be figured out. One clue would be when did the symptoms begin. If after initiation of the meds, that would be a clue.

Here is some info on HU for you to review. Be aware that many docs are not familiar with this medication as its use is outside their scope of practice.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

ncbi.nlm.nih.gov/books/NBK5...

This is not to say that HU is the culprit, just that it is on the list. You already know that aspirin is on the list. The good news is that if either of these meds are the cause, there are other options.

All the best.

[BluePeony in reply to hunter5582]

I’ve been surprised about how low information my PCP is about all things MPN. When I initially went for a GI work up it was routine, although I also have a hiatal hernia and a wonky bowel. I suspect very high doses of NSAIDs following a knee replacement a year ago to be a factor as my real troubles began at that time. I went off those, but still the symptoms are bedeviling quite frequently. You inspire people here to self-advocate, which is immensely helpful.

[IrishHiker in reply to BluePeony]

To be fair to all PCP’s and Hematologists who do not specialize in MPNs there are absolutely TONS of information they need to be kept abreast on. I am a retired “Oncology Certified” Nurse. I went the “extra mile” to become certified. That involved long hours of study plus hands- on delivery of care ( chemotherapy, blood products, etc.) along with patient education and ethics studies. We never even touched upon MPN during my studies. I learned about them onlyby encountering them on a case by case basis (which were as rare as hens teeth!). It is for that reason why, for your best care, you should seek out a MPN Specialist for they are the ones who have chosen our rare cancer cases to specialize in. Best of luck to you!

[BluePeony in reply to IrishHiker]

I appreciate your reply, and I take your point regarding the rarity of MPN’s. I have a long standing “relationship” with my PCP, and I highly respect her. I was simply surprised she wasn’t interested in doing a wee bit of research after my diagnosis. At any rate, I do have a wonderful Oncologist at Mayo here in AZ, so I feel like I’m in good hands. Bless you for the work you do! Best ~

[Stephen399b]

I have had ET since 2016, taking HU and low dose asprin and I was constantly getting stomach cramps and upsets. After a number of tests, including ingesting a camera which passed through my gut, 2 things became known.

I have Diverticular disease - I have known this for a long time and generally keep it under control with diet.

Secondly, I was getting inflamation from the asprin, even though it was enteric coated. I have switched to clopidogrel and since have had very few problems.

Hope this helps

Stephen

[BluePeony in reply to Stephen399b]

Thanks for writing, Stephen. I will certainly ask my GI about clopidogrel. Do you suppose they throw letters out on a scrabble board to come up with drug names? My current bout of pain and nausea is winding down a bit ~ they generally last a week or two. I hadn’t understood well about the inflammation aspect until I began researching it at the suggestion of Hunter, here on this site. When I’m at my worst it slams my entire body…sore joints, high blood pressure, blurry vision, etc. Best ~

[Stephen399b]

Good thought- I have essential thrombocythemia and systemic mastocytosis, so I think that scores about 150 in scrabble. Can't wait for Fexofenadine on a triple word score!

Keep smiling

Stephen

[BluePeony in reply to Stephen399b]

You definitely win! Mastocytosis sounds wicked though. I hope you have most of your issues under control!

[Annula]

No problems here with any gut issues - are you taking anything for it ? maybe Lanzoprazole would be ok depending on what your doc thinks -or maybe look at your diet -fresh fruit n veg rather than too much processed stuff -difficult to avoid I know!! Lots of luck.

[BluePeony in reply to Annula]

Thanks for your reply, Annula. I’m quite careful about my diet, but I know I could do better. I’ll have to pay more attention to not indulging my sweet tooth in future as sugar encourages inflammation. Easier said than done. Best to you!

[JaK2ET]

Your gut symptoms sound horrible and totally unacceptable. I hope you get help very soon - perhaps changes to medication, tests for inflammatory bowel disorders and corresponding treatment, etc. Good luck and do let us know how you get on!

[BluePeony in reply to JaK2ET]

Thanks so much for writing. I will see the GI doc next week. When I was diagnosed with PV three years ago the specialist told me that stomach issues are a big deal. I guess I dodged the bullet up until several months ago. Who knew inflammation could wreak such havoc? I’m probably a wimp as I’ve never had belly issues, much less debilitating ones. Hope you are doing ok.

[Borage]

Hydoxycarbamide upsets my gut. I found Kefir has resolved the problems. I started with a small amount of the supermarket Kefir at first but now I make 200 mls every day using live kefir grains and full fat milk. There are instructions and kefir grains available online.

[BluePeony in reply to Borage]

Thanks a million, Borage. I do use kefir ~ DIY sounds fun! I have to go for an endoscopy next week. I’m looking forward to some answers.