Stomach Pain- similar feeling to acid

[L33Dav]

Hi all, I was diagnosed with CLL 3 months ago at 41. Had no real symptoms other than swollen lymph nodes until now. I am experiencing stomach pain and swelling high in stomach, similar to acid. This has lasted for 2 days now wondered if this was normal. My CT scan showed that my spleen was enlarged so assume this could be linked? Any thoughts would be appreciated.

[lankisterguy Volunteer]

Hi L33Dav,

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I see you joined us today, and this is your first post.

Welcome to the club that none of us wanted to join.

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Being alert and alarmed by symptoms early in your CLL journey is common, and most of us find it challenging to separate the things actually related to CLL, and those that are from other causes.

Our doctors have the same problem, but a good GP will step through a process called "differential diagnosis" en.wikipedia.org/wiki/Diffe... to check for the most common causes and eliminate them by specific tests.

As a result of our CLL, we are immune compromised, so often we can contract odd bacterial or viral diseases that are not expected, but do occur.

Our UK members have relayed the difficulty of getting appointments with their local GPs in some areas, so we hope you can find help if the symptoms continue.

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Len

[L33Dav in reply to lankisterguy]

Thank you for the response Len and the welcome.

I was concerned at the area of the pain and swelling being in and around the spleen. I think I will take your advice and book and appointment.

Thank you

[Gradyboy in reply to L33Dav]

When I first started treatment I felt very swollen in my upper abdomen. My spleen was very enlarged and pushing on my stomach. Are you losing weight? I lost some everyday for awhile, until treatment started and kicked in.

[L33Dav in reply to Gradyboy]

Yes I have lost a few kilos, that’s interesting to know thank you.

[L33Dav]

Thank you

[CycleWonder]

I had acid reflux that was related to enlarged lymph glands in the abdominal area and an enlarged spleen. Raising the upper half of your body as suggested by Jammin_Me is useful.

Some other steps that worked for me were:

1) cutting out acidic foods (tomatoes, tomato sauce, citrus, etc)

2) curing out alcoholic

3) eating more at lunch and less at dinner

4) no after dinner snacks

5) if you can, drinking milk.

I could not take the proton pump inhibitor drugs so I had to use diet and the timing of eating to manage it.

Once I started treatment, my problems faded away quickly.

[LeoPa]

In case it is just acid reflux and not something else try one tablespoon of unpasteurized apple cider vinegar (with the mother) mixed into one glass of water. Keep sipping it throughout the day. It should fix reflux problems quickly. If you have a stomach ulcer this might not be advisable.

[PoisonDwarf]

Welcome L33Dav.

I don’t have heartburn or the feeling of acid, but my doctor was concerned about ‘silent acid’, so prescribed a proton pump inhibitor. It hasn’t stopped the bloating or weight loss but has made it more comfortable to eat. My spleen isn’t enlarged, but I have enlarged & painful lymph nodes throughout my body. Waiting to hear from my hematologist on next steps, but if it’s not treatment, then my doctor wants me to see a gastroenterologist.

It’s a horrible feeling, so I hope you get relief soon.

[goodolddave]

In terms of elevating the head of the bed I use very large books - about eight by ten inches - also I got non stick furniture pads for the bed. Originally this was for my wife's acid reflux but now it is helpful for me as well.

[Jujy]

My husband is the patient ... before diagnosis and treatment he lost a lot of weight and had abdominal pain and felt bloated all the time (there are a boatload of lymph nodes in your stomach). Fast forward to gallbladder removal and recent referral to a gastroenterologist. He is being screened for Celiac and IBS-D (tested positive for Celiac gene). Apparently it is common to have Celiac and CLL. We shall see. Hopefully it will also clear his chronic cough (though he now has an appointment with a pulmonologist). We have found his oncologist is happy to make referrals whereas his GP is not.

[wizzard166]

Hey Dav

I'm currently dealing with similar type of pains, but I'm a lot further along with CLL than you are. I'm diagnosed in March 2018, so I'm a little over five years now.

Recently I had high liver enzymes, and my Spleen was felt on touch on a visit to my Specialist this past March. She told me to contact my Gastroenterologist, and he ordered an MRI of the Abdomen. The test report shows an enlarged liver and very enlarged Spleen at 20cm. I also have a significant proliferation of enlarged lymph nodes in the abdomen. The type of pain you and I are feeling is a common symptom of an enlarged Spleen.

I google things, so I know already that at 20cm the Spleen is too large and can rupture. I'm in a phase right now where I haven't complained to my Specialist that I have some pains in the abdomen, because I don't want to purposely encourage her to initiate treatment. I've had a history when I was very young in my twenties of having Colitis. I beat it back in those days, and have not had bad issues since then (that's over fifty years ago, but my stomach area has always been sensitive to any pressures mentally I've had. Not bad like the colitis days, just awareness of discomfort. So I'm not really sure that my current pains are really the spleen. I also have a feeling of fullness after eating less than I easily ate not long ago. You seeing a Gastroenterologist about your pains in the abdomen now, would be a wise idea. I imagine you shouuld also let your CLL Specialist know too; although, I don't imagine your spleen is as large as mine if you are only three months diagnosed.

Carl

[scryer99]

If your lymph and spleen are showing enlarged on a CT scan, that could be related to the pain.

For me, pain was concentrated below the left hand rib cage. For about a year it was intermittent 2-3/10, but eventually increased and was more consistent 5/10. Mild shortness of breath, occasional nausea and loss of appetite. Towards the end it felt a bit firm/distended, again on left hand side.

Pain spiked around Thanksgiving to 7/10 and diffused down and to the left, leading to brief hospitalization for spleen damage. More details on that here:

healthunlocked.com/cllsuppo...

My spleen was 14 cm at the start of that, got to about 18 when hospitalized, was 20 at trial entry and got to a max of about 22-23. I did not have significant lymph issues. I had some acid reflux, controlled with omeprazole, but was examined by a thoracic surgeon via endoscopy and cleared of non-CLL-related damage. So I'm pretty sure CLL-related spleen swelling and damage caused the symptoms I saw that were similar to yours.

I'm now in treatment and doing better, though spleen issues flared up at one point and they had to pause treatment briefly.

I'd get it checked out. They can tell a lot by poking and prodding in person.

[Big_Dee]

Hello L33Dav

Barring an hyperacidic stomach from anxiety of CLL diagnoses, the bed headboard elevation is a good idea and works for me. You can purchase set of plastic rectangular cups in 2" 4" and 6" height with 3/4" recess to contain bed leg rollers, so bed does not roll off cups. You may very well tend to move down the bed overnight, but so far I have stayed in the bed. Blessings.