Severe stomach issues

[DamnYouEt]

Hi. I’m having ET and it’s been quite a few months since I started experiencing stomach issues. I have severe pain during and after I eat something. Is anyone experiencing the same?

[hunter5582]

Not currently, but it has happened before. The last go round with this was back in 2013 when I developed some form of upper GI obstruction that in turn caused significant gastritis. It was quite painful. It has not repeated since it cleared, but the docs never did really figure it out. I do have ongoing GERD with a hiatal hernia. I believe this is related to the JAK2 mutation, which causes systemic inflammation (overproduction of inflammatory cytokines).

I hope you get answers soon. The doc should also be checking for splenomegaly as it will need to be ruled out. DO please be sure to push to get answers. Ongoing pain should not be ignored.

[DamnYouEt in reply to hunter5582]

Thanks. Working on it!

[Melanie66 in reply to hunter5582]

Hello ... just reading through as I usually do most days .... intrigued to read about jak 2 mutation which produces over production of inflammatory cytokines ..did not know this until this morning...... I’ve just been diagnosed with rheumatoid arthritis???now I can see the GP did not have this information about et jak 2 ... which I have ......thankyou...so much ....

Lainie.. xx ...

[hunter5582 in reply to Melanie66]

Lots of docs know very little about MPNs or the implications of the JAK2 mutation. MPNs are rare disorders and much of what we know now is in the emerging research. it really is necessary to educate yourself so that you can act as an advocate for your own care.

Here are a few links to get you started

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

hindawi.com/journals/mi/201...

researchgate.net/publicatio...

There is a lot more out there about this topic. Much is it is very technical so you need to do a lot of secondary reading to understand it (medical dictionary helpful).

All the best to you.

[Applesnpears]

Have you seen your doctor about this?

There are lots of potential causes other than ET.

[DamnYouEt in reply to Applesnpears]

Yes I have been to the doctor many times regarding this issue.

They’re changing medications but nothing seems to work for now. My haem has suggested an endoscopy.

[Applesnpears in reply to DamnYouEt]

An endoscopy is needed if only to take some possibilities off the table.

Intestinal angina is a possible ET related cause but merely speculation based on your symptoms. Reduced blood flow/ clotting in the arteries around the stomach could be caused or exacerbated by platelets getting together where they are not wanted.

[PhilReade]

Hi I’m on hydroxycarbamide 1500 mg daily and many other medication I’m ET jak 2

I’ve just had a colonoscopy because of really horrendous stomach cramps in my lower stomach I had a splenectomy in 2014 and my spleen was removed in my lower stomach due to size along with key hole to detach

They took some polyps in the colonoscopy but everything was ok but I’ve been put on Mebeverine 135 mg 3 a day off gastroenterologist

The cramps was so bad I was sweating nauseous and felt as though I could pass out.

Regards

Phil

[Mwalimu]

This may be a too simple suggestion but are you taking a daily aspirin? If so, is it gastro-resistant. I had problems which cleared after switching to enteric- coated aspirin and taking it within my meal rather than before or after.

[ChelseaF]

I had similar pains which is what led to my eventual diagnosis. I never figured out for certain what the cause was but I believe it was my spleen. Every now and again I experience it still. I am waiting for the next bout to schedule an ultrasound and have a look.

For me, at it’s worst it was a gnawing, very intense pain like a sword trough my left ribs. I felt it more keenly in my back. It always intensified with eating. It got gradually better and eventually stopped. It’s come back a few times but never for as long. Every time I eat a large meal I feel a discomfort there and it makes me nervous.

[Cja1956]

I had that at the beginning of my Et journey And it turned out to be a blood clot my spleen. It was such severe pain I had to be taken to the emergency room in an ambulance. I was in the hospital for three days. Please have it checked out.

[Bears23]

I too had gastro issues, had endoscopy, mine was caused by the aspirin (bleeding). Ive had been taking baby aspirin for 12 years without incident, but,.....apparently this is not that uncommon, according to my hematologists.

I began taking pantoprazole which helped for a while.

My hematologists wanted to try baby aspirin every other day to see if this can be tolerated. So far, so good.

Best of luck to ya!

[Uzza]

I did prior o being diagnosed since treatment I have had a better condition. Reduced blood flow due to aggregating platelets could be the source of the problem.