Ulcers and Gastric Intestinal Metaplasia

[Zanzibi]

I was recently diagnosed with ulcers and yesterday gastric intestinal metaplasia to add to the ET diagnosis from about a morn ago. This site has been fantastic at helping me understand ET, and the posts from this community help me understand the variety of experiences associated with ET. Thanks for that! Just wondering if anyone has also had the GI issues noted above and if there could be any correlation. Also, what type of treatment was recommended? I am familiar with and follow the right diet to reduce acid. Thanks in advance for any responses.

[azaelea]

Hi Zanzibi, I have ET JAK2+ diagnosed in 2018 and for the past few months have suffered gastro-intestinal problems. I had a colonoscopy last November which confirmed Diverticular disease which I already knew from previous colonoscopy 10 years ago. However as well as the pain from diverticulitis I'm suffering abdominal cramps and pain along the pelvic area. Have you been told your gastric problems are connected to your ET? I would be interested to know. Regards Fran

[Zanzibi in reply to azaelea]

I am sorry to hear that and hope you are able to get some good help to address the situation. I see my hematologist next week and am going to ask if there is any relationship with the ET and/or JAK2. My GI doctor thinks it could be related to all the aspirin I have taken for headaches over the years. Some of the headaches are likely from ET. So there is a possible connection in that sense. Still gathering info. All of this is new for me. Thank you for your response.

[hunter5582]

I have JAK2+ PV - was ET for 25 years then progressed to PV about 7 years ago. I also have GERD, hiatal hernia and have had bouts with significant gastritis and esophagitis. I do believe there is a link in what it is that the JAK2 mutation does in the body. There is a substantial body of emerging research looking at the role of inflammation stemming from this mutation. The KISS version is that in addition to making too many blood cells, the body is making too many inflammatory cytokines. This can cause many of the secondary symptoms people with MPNs experience. For me, I believe this contributes to: osteoarthritis, plantars fasciitis, eczema, insomnia, etc. Systemic inflammation is not our friend! there is research underway looking into this issue. hopefully we will see some better solutions in the near future.

[Zanzibi in reply to hunter5582]

That is really interesting and helpful. Thank you. I will discuss with my doc.

[hunter5582 in reply to Zanzibi]

Add to the discussion the fact that the GI inflammation also can trigger the body to make more platelets (reactive thrombocytosis). When I had a bad bout with the GI issues, my platelets went from low 500s to close to 1 million. The JAK-STAT pathway function is quite complex and involves multiple body systems. Hope you get it all sorted out ASAP.

[Zanzibi in reply to hunter5582]

Good point. Now that I am taking something to deal with the ulcers I have been wondering if you platelet level may go down.

[Aime in reply to hunter5582]

Very interesting. My gp has recently asked rheumatology advice as my osteoarthritis and general inflammation is horrendous at the moment. My platelets have also started to rise. I was initially diagnosed with PV and then rediagnosed with idiopathic erythrocytosis when I tested negative to jak2 and Xeon mutations.

Kindest regards Aime xx😻

[hunter5582 in reply to Aime]

Did they also check for MPL and CALR mutations?

[Aime in reply to hunter5582]

No they didn't as I had too many red blood cells at the time and my first haematologist only checked jak2. It was only when I went for second opinion, i got checked for xeon one.

Kind regards Aime x😻

[hunter5582 in reply to Aime]

Sounds like they checked for JAK2 Exon 12 mutation. I am not sure why they would not have checked for the CALR and MPL mutations. Perhaps some docs just do not look at those. There are some MPNs that just do not fit neatly into one category. I hope you can get it all sorted out.. If you have not already consulted a MPN expert doc, I expect it would be wise to do so. Not all docs, even hematologists, have the knowledge needed, particularly in complex cases. Here is a link to some patient recommended docs with MPN expertise mpnforum.com/list-hem./

[Aime in reply to hunter5582]

Hi Hunter, yes thank you for the link. I live in Scotland so my second opinion was with the haematologist mentioned on the list. I’m not sure if they just suspect PV when they test for the jak2 and Xeon mutations.

I will see what happens with my blood counts. If my hematocrit continues to drop without reason and my platelets keep rising, then I will insist on being rediagnosed, yet again but better safe than sorry.

Kindest regards Aime x😻

[Hidden]

A piece of information that might help:

“The medical significance of metaplasia is that in some sites where pathological irritation is present, cells may progress from metaplasia, to develop dysplasia, and then malignant neoplasia (cancer). Thus, at sites where abnormal metaplasia is detected, efforts are made to remove the causative irritant, thereby decreasing the risk of progression to malignancy. The metaplastic area must be carefully monitored to ensure that dysplastic change does not begin to occur. A progression to significant dysplasia indicates that the area could need removal to prevent the development of cancer.”

[Zanzibi in reply to Hidden]

Thank you. My GI doctor warned me of that and is monitoring. Metaplasia is certainly something that must be taken seriously. I have also read it is possible to reverse. So I will try to do everything I can to do that.

[Hidden in reply to Zanzibi]

I wish you well, my friend.

[Martini54]

Hi, I also suffered with stomach acid, my Dr put it down to the Aspirin, I now take one 20mg of esomeprazole (Nexium Control) every 3 days. works for me so far. Good luck

[Zanzibi in reply to Martini54]

Thanks. Too much aspirin may also be a contributor for me. No longer taking it or ibuprofen. So glad yours cleared up.

[Aime]

Hi Zanzibi, I have idiopathic erythrocytosis (too many red blood cells, cause unknown) and haematologist is sending me to a GI consultant which I’m not looking forward to but have agreed to go as I seem to be getting more anaemic instead of less as I usually do.

I do suffer from gastric reflux but I’m very sensitive to anti inflammatory meds, even aspirin which I cannot tolerate so they are suspecting I may have ulcers. I’ll let you know how I get on.

Kindest regards Aime xx😻😻

[Zanzibi in reply to Aime]

Good for you for going. I was very glad I did, as I was not having symptoms and condition would have worsened without intervention, which I am hoping will work. I hope for you that nothing serious is found, but good to check.