Outrageous stomach pain

[longbow]

Hi folks, this is my first post.

I came down with CFS in 1991. It hit hard, I was in bed for the first year and a half. It took my career, house, family and marriage. It has been a long road of a roller coaster ride which has precluded participation in most aspects of my former life. In the 10 years before CFS I had IBS or whatever it is, with killer diarrhea. Just before the CFS I got onto cholestyramine which has worked pretty well.

About 8 months ago I developed intense stomach pain. Bad enough that I went to emergency three times. I have had an ultrasound, cat scan, mri, colonoscopy, gastroscopy, all to no avail. I am on oxycodone and oxycontin for the pain and the drug is making life even more difficult. Along with the pain I experience intense nausea, I vomit frequently and have lost thirty pounds. The oxy causes bad constipation which breaks every four or five days with extremely painful cramps and diarrhea, then the cycle begins again.

I am writing this to ask if any of you has had/is having a similar g.i. problem, because I am beginning to get pretty damn depressed with it all and can see no light at the end of the tunnel.

A great telephone friend of mine with ME says she believes it will resolve itself one day, and I am really hoping that some of you can corroborate this, as I think you can imagine what this level of pain and sickness together with the oxy is doing to my CFS/ME.

I, like most with this disease, have seen many doctors and been met with shrugged shoulders more times than any human should have to put up with, and I'm now getting the same routine with this belly pain.

FWIW, I'm 60, male and tolerably well-educated.

Any info/help out there?

 

[Karin]

I just wanted to check if you had a gallbladder ultrasound done. My mother suffered for 20 years with recurrent stomach pains where she would roll on the floor and scream and vomit. She had many tests done, endoscopies, nothing was ever found, until one smart doctor thought of checking her gallbladder. She had several big stones in there, and after her gallbladder was removed the problem stopped overnight.

Other than that, what helps my own stomach pains a lot is raw garlic. (Cut a clove off a fresh bulb, peel and crush it in a garlic press, let stand 1 or 2 minutes in the air, then add olive oil and swallow the whole thing, followed by water.) That is very acidic and I guess not recommended with an ulcer or stomach wound. With stomach inflamation it does cause some nausea and burning for a couple minutes, then huge relief. I do not have intolerable pain or vomitting though.

Otherwise, another thing that helped me was to do an IgG food panel (blood test), and removing all the foods that showed up sensitive in there (about 30 in the 200 tested in my case). This really calmed down my GI tract a lot.

Last, the whole family had great results with courses of Flagyl, supposedly because we have a tendency to get overgrowths of anaerobic bacteria of the clostridia type, that can result in problems. Going low starch helped too.

Just throwing some ideas out.

 

[wciarci]

I would recommend the elimination diet and to check for acid reflux. Many with CFS develop an allergy to gluten and to diary. Cut them out for a minimum of 1 month and then start introducing them back. IBS is a constant problem.

Wendy

 

[kolowesi]

longbow

Is the pain worse at any particular time, e.g. waking up at 3 a.m.?

How would you describe it, burning, aching, pulsing, spasming?

Many of us have enterovirus in our stomach tissues. I was able to pay for a test using some slides made from an antrum biopsy done during an EGD (can't remember the words for that) It showed enterovirus and CMV in my stomach tissues.

Also, I had a period of terrible pain, but not the other stuff, which I believe was pancreatic flukes. I had the early antibodies for cancer (the non-specific anti-malignin antibodies). Flagyl helped but did not last. So I went to a Traditional Chinese Medicine doc for about a year. I was on many teas and herbs during that time, and my anti-malignin antibodies returned to normal and the pain went away.

He had me go off all my meds and a bunch of other infex got worse, though!

In case you haven't tried this, you could take Pepto-Bismol for a few days. I was told about this by Klutzo, a member on here who has had Lyme for 24 yrs. Actually, you might want to PM her, I don't know if she is on much and she may not see this. She might have some other ideas.

Sorry I'm not much help. This sounds so serious, not to mention miserable.

 

[camas]

So sorry, longbow. I don't know a thing about stomach issues, but do know from experience that a bad gallbladder can cause nausea, vomiting, and pain that leaves you doubled over or thinking you're having a heart attack. It can also lead to other digestive problems like diarrhea.

My mother, sis, and I all have CFS to varying degrees and all had our gallbladders out many years ago. Tests showed nothing because we had no stones, just diseased gallbladders. I believe someone in the Incline Village cohort mentioned that number of them had to have their gallbladders out too.

I would hope that they'd have more specific gallbladder testing now so that at least that could be ruled out as the cause of your misery.

 

[glenp]

Hi longbow

Welcome

When you mentioned cycles I thought of lymie -- some with some lymie type infections have cycles, I forget which bug, someone else may know.

You mentioned ultra sound - it could be they didnt do enough areas. I once had one done, the tech phoned the doctor to ask permissioin to do further scan (more area) the doctor had written for gallbladder but the tech wanted more area, then they found a cyst in the messenteric

I hope you can get some help here

glen

 

[Victoria]

Longbow,

may I suggest you read my Rotten Gut Blog (written last year) - that might give you some clues.

Once I got rid of the parasitic infection, I got much better very quickly. I only get 5-6 bad episodes of IBS per year since 2004. Even those episodes, I can usually attribute to eating the wrong thing.

Dairy & Grains are not good for me either.

PS I had my gallbladder removed after 9 years of symptoms including several episodes similar to a heart attack. A severe gallbladder attack results in excruciating pain in your right shoulder blade area (amongst the other symptoms of pain in the gall bladder area, vomiting, yellowing of the eyes etc).

A normal ultrasound should pick up gallstones the size of sand as well as large gallstones. 4 out of 5 members of our family have had their gallbladders removed because of severe gall stone attacks. We all have different diets & lifestyles, so perhaps one can assume there is a genetic predisposition to gallstones in the family.

 

[*GG*]

I wonder if LDN would be of any help?

 

[serenity]

i too thought gallbladder, my dad & friend have both had issues with that. or IBS, i have another close friend with that. other than that i dont' know, i am guessin the docs should have checked for those things. i am sorry, wish i could help. my only major stomach issues have been from taking too much Aleve for pain.

 

[longbow]

Thankyou all for your caring replies. I was fortunate enough when this all started (the stomach pain) to find the only really good Doc I've found in twenty years, and he did thorough investigations of all the stuff you guys are talking about. The gall bladder thing was one of the first and it too was negative. Naturally that Doc has just left to go back to South Africa so I'm left with the two old quacks that have been sewing up bullet holes and chain saw wounds with bailing wire and a rusty nail around here for way too long.

My next and presumably last kick at the cat is another colonoscopy the good Doc ordered before he split. After that I'll try some of the more ancillary ideas you all have suggested.

Looks like I'm on my own with this one....

Thanks again for all the good ideas.

 

[HopingSince88]

Hello Longbow,

My daughter is very ill and has severe abdominal pain. She has been sick with this for about 20 years, and no cause has yet been found. She has had every test imaginable, and spent 3-4 years of her life in a hospital room...or at least it seems that way to me. currently she controls this problem with pain meds. It is a bad solution, but the only one that has helped in any way. We plan to have her tested for XMRV next month.

 

[longbow]

HS, you and your daughter have my most heartfelt sympathies and prayers. After 8 months of this pain on top of the CFS etc., I'm quite fed up to put it mildly, I can't imagine the anguish you all must be going through after twenty years of it.

As I said I am using the narcotics for pain, something I would very much like to get out from under, but there is no alternative at this point. I am just hoping that these old coots I'm left with for doctors will co-operate as in the past they have acted gut-shot at the mere mention of narcotic pain meds. It is a nasty choice one has to make, but I'd rather be out of it than writhing on the floor in agony.

I sure hope you guys have a good doctor as that is so very helpful. It's the shrugged shoulders and complacency that I find so very hard to take.

Again, I ask God's blessings on you both and I will continue to remember you in my prayers.

James

 

[Martlet]

Longbow - there is just one more thing coming to mind, but it depends on where your pain is. I sometimes have pain that feels like a gallbladder attack but know it isn't that because my GB is no more. I also get pain on the opposite side, right where the spleen is. Sometimes I get them at the same time, other times not. And believe it or not, it is gas! Right where the ascending colon goes up on your right side, it makes a sharp turn into the transverse colon, then when it reaches the other side, there is another sharp turn into the descending colon. It is very common in some people for a really big bubble to get trapped in either of these flexures. I found that out after a colonoscopy when there was still some air trapped in there. One of the nurses showed me how to massage it across and down. It relieved both the pain and the nausea, but took (and still takes) a few minutes on my back, rubbing my tummy.

Don't know if this will help, but I thought I'd raise it, just in case.

 

[camas]

Just another thought. Have you been checked for celiac disease? I believe it only requires a simple blood test. I have an acquaintance whose celiac wasn't caught until she was in her late thirties when she began to develop severe stomach pains.

 

[longbow]

Thanks guys. The pain is way worse than the abdominal cramps in the intestines cause by gas and disfunctional mobility, as I have those as well and am well acquainted with them. This is of an exponentially higher order. Its locus is just below the breast bone in the stomach and feels like severe hunger pangs on steroids as a starting point.

And as to celiac disease, I just had a gastroscopy and biopsy because the specialist suspected that right off. Unfortunately that also was negative.

Thanks a lot for the input though.

 

[Forbin]

In my case, I developed pretty severe gastro-intestinal symptoms a few months after the onset of CFS symptoms. I had severe stomach pain, among other things. After an endoscopic exam, I was diagnosed with superficial stomach ulcers. A year later, I was further diagnosed with chronic ulcerative colitis, but, a month after that, I was told by the head of gastroenterology at UCLA that I definitely did not have chronic ulcerative colitis.

After trying a few other unsuccessful treatments, my gastric symptoms, as well as many of my CFS symptoms, abated within a month or two after I began oral anti-fungal treatment for chronic candidiasis. This may have been pure coincidence, but it is apparently not unheard of in a small subset of CFS patients. My guess is that CFS can weaken the immune system on a variety of fronts and that one of the opportunistic results might be chronic candidiasis.

This is not to suggest that candida is the cause of CFS or that treating it will cure CFS. Treating presumed candida overgrowth, appears to help in some (perhaps few) cases, however.

For more on this, see my first post

http://www.forums.aboutmecfs.org/showthread.php?4542-My-Story-Successful-Treatment-of-Candida

 

[Sunday]

You might want to take a look at Freddd's story, if you haven't already. He had many of your problems, including a car accident that put him on serious painkillers, and throwing up every day. By his report a couple of months ago, he was up on his roof, repairing it.

Good luck with this. Have you already looked into kefir and fjolmilk (might be spelling this wrong. It's a Swedish milk culture, a local woman who had part of her intestines out with cancer swears by it)? And I think the parasite thing might be worth investigating, they are often mysterious and persistent - and a friend of mine with a lot of experience says some parts of their reproductive cycles are worse than others. I can't remember if you said if you've noticed that, sorry, I'm running out of brain. (I'd be happy, I'd be merry, life would be a ding-a-derry...)

 

[CBS]

Hi Longbow,

It looks like you've been evaluated at for a number of issues. I don't recall seeing anything about a hydrogen/methane breath test and the possibility of SIBO. I have posted some info on this on the Flagyl thread: http://www.forums.aboutmecfs.org/showthread.php?5737-Flagyl-Antibiotic-Query.

I know your symptoms are severe. SIBO can cause outrageous pain at times. FWIW. Good luck.

 

[Timaca]

Have you checked into enteroviruses? There is a good presentation by Dr. Chia (with some great slides) here: http://www.scivee.tv/node/7965/video Scroll down until you see the video of Dr. Chia and enterovirus.

More info can be found at www.enterovirusfoundation.org. You can do antibody testing at ARUP lab. See: http://www.enterovirusfoundation.org/chronicinfections.shtml

Dr. Chia may also test stomach tissue for enterovirus. You can contact him at: http://losangeles.citysearch.com/profile/173699/torrance_ca/chia_john_k_s_md_i_d_med.html

Best, Timaca

 

[longbow]

Hi All and thanks. I feel like the end of the world right now so will not talk long, just will say that I had a test for Candida early on in this stomach pain thing and it came back negative. "Negative" that just about says it all. Think I'll change the name of ME/CFS to "Negative."

With my good doc gone, I just collapse inside at the thought of going forward with any of this with the idiots I'm left with at our Doctor's Office, but perhaps when I feel up to it I may take a kick at the Nystatin cat. God.