Well for those of you who've been following my gut woes, you know I've been waiting to figure it all out for a while now. Last week I heard back about my biopsies and today I saw the gastroenterologist.
The worst part was when he started saying stupid things about M.E. or "post viral fatigue" is what he called it. That got my back up. I won't go into the details but according to him it's a problem with hormones and chemicals in the brain. He asked, "Are you depressed?" Sigh.
The only thing the biopsies picked was very mild chronic gastritis (stomach inflammation), and some esphopogitis (inflammation of the esophagus). This along with 3 very tiny ulcers, (and GERD class B) does not account for any of the pain I get in my stomach after eating according to this guy?
My problem, I was told, is post-infectious irritable bowel syndrome and a lot of mumbo jumbo about "chemicals in the brain" once again.
I had some small cysts of various sorts and was told I should get another colonoscopy in 18 mo (however, that polyp was not cancerous) - not going to happen.
Despite the fact I told him numerous times I HAVE an M.E. specialist, he said I should see a local infectious disease specialist for the post-viral fatigue. Even my friend (roommate, cousin) who went with me got frustrated with him. She said, "Look, she's really sick". I'd given up by then. I didn't need to hear any more.
He turned around a bit when he realized I was angry and had "checked out". He thought I should do an abdominal cat scan just so "we've covered every base".....
My conclusion: I'm never seeing that Dr. again.
And of course I'm still left with fairly constant aching stomach pain for two months without let-up, vomiting (including the last two nights after eating) and some diarrhea (although that seems to be improving). Everything I eat hurts...it doesn't matter what I eat.
Honestly, I don't want to see another Dr. as long as I live. They are all so useless in my experience.
I see Dr. B. (my M.E. specialist) again in a couple weeks. Or maybe not, maybe I'll just sign off all Dr.s for good. Am I any better/healthier since seeing any of them?
I'm so disappointed it's hard to put into words. I thought for once I had something "treatable". That someone could help and I'd feel better....that I'd be able to eat again without pain.
“Physicians often assume that if they do not understand what is wrong, their ignorance is not at fault, but rather the patient is imagining the problem"
ReplyDelete---Raymond Francis, "Never be sick again"
upnorth, sorry to hear such an painful experience with doctors. i gave up years ago. there have never been any positive experience with doctors during about 10 years of my chronic condition.
stomach problem is fatal. have you thought about taking some nutrition shakes for temporary purpose? when i got stomach problem, some nutrition shakes helped a lot. but of course your problem seems much more severe. and you probably already tried.
don't give up! i learned that our body can cure itself from almost any condition (i read that from "never be sick again", and i tend to believe it.
Yun Yi, yes smoothies/shakes are one of the least painful foods for me right now. Those and soups. I'm also considering switching to a more expensive probiotic. Thanks for your comments....yes, I too have been ill six years and have found Dr.s useless. I don't know why I tried again with this one.
Deletewhy did I say ill six years? It's actually been 10.
DeleteSorry you had such an awful experience with this Dr., Upnorth. I just don't get why they are the way they are. I was fortunate to have a Dr., who was one of the authors of the Canadian consensus of CFS/ME be the one to dx me, but really that's where it ended with traditional Drs. and my treatment.
ReplyDeleteSince then, I've learned much more from my own research and others who also have these illnesses. I also use the services of a Naturopath and a Homeopath. Many times, it's been trial and error and it's all been baby steps -- sometimes one forward and two back.
I have had GERD and digestion problems for 30 years (long before ME) and had all the tests and tried all the medication. Same response from them as you've experienced...."It's not that bad" blah blah blah.....
I agree with Yun Yi about the nutrition shakes or a good greens drink. My naturopath picked up on the terrible state of my digestion/GERD (said it was so bad, eating was almost toxic to my system --- a catch 22 because we need to eat, but eating was causing me more problems). She recommended a certain kinds of greens drink and explained it would be easy on my system. It's in a liquid form so my body wouldn't have to work at breaking it down in order to digest it (as with solid food) and be able to absorb the nutrients much more easily. Wow...she was right...I noticed a significant "pop" of energy when I started them (and I mean "pop" as from a ME state, not from a healthy state with an increase of energy)
I think I remember you mentioning in a previous post you were taking pro biotics -- acidophilus. I found the live strain (the one which must be kept in the fridge) to be very helpful. The higher the count the better (I currently take 12 billion but have taken higher). I take this about 20 minutes after my last meal of the day. Also, a good digestive enzyme about half way through the meal.
Please don't give up though....as hard as that may sound. I understand how frustrating it gets and I think everyone with ME has been there and will be there again. It is so very frustrating....the whole thing...from dealing with it and trying to understand it ourselves - to explaining it to other people -- to dealing with Drs. Very.frustrating. But who knows....the next thing (or the thing after that) may just be the turning point for you. This was the case when I was trying to get a dx....I'd been to so many specialists with so many tests. Nobody had a clue. I was so discouraged and was going to cancel my upcoming appt. with the internist. I'm glad today that I went though because he knew right away what it was! That few minutes was a huge piece of the puzzle for me and one I could have easily missed. Now...if only someone would find the next piece of "our" (ME sufferers) puzzle and find a cure for this dreadful illness!
Thinking about you, Upnorth.
At Home on the rock, your supportive comments actually brought tears to my eyes. It is so frustrating isn't it, to be sick and have so little answers and help? I have been thinking of switching my priobiotic. Also doing a round of BioK....I used BioK when I had c. difficille and it did wonders. I do a lot of smoothies lately (with protein powder. Perhaps I should do a greens instead or as well. And I hear what you're saying about hope...it's just holding onto it after 10 years sick and little success and then a patronizing experience like that. Thanks again for your comments.
DeleteUpnorth
ReplyDeleteI am so sorry you are going through so much. What you shared I could have written myself! I first started having stomach issues 12 years ago and went off of dairy and it went away. I spent three weeks in terrible pain with no answers. Then as you know a year ago it all came back and it has not gone away. It is slightly better with homeopathy, but digesting seems to be an issue....I take probiotics 3x a day after meals like Linda. In fact Linda's advice has helped me alot. I do not eat after 7pm as it causes more bloating when I lay down. I also eat limited foods. Dominique has written alot about Amazing Grass that helps her digestion issues so much...I am going to order some to try. I also drink a protein drink at times. When I had the endoscopy they found absolutely nothing and the biopsies were negative. I still have not had a colonoscopy because I cannot imagine what the stuff you drink would do to my stomach. It is so frustrating and I cannot tell you the number of doctors who blew me off as depressed or stressed or having too many kids or being, get this, "a menstrating female"! Seriously I thought JOel would deck that guy!
We want answers and they are hard to come by.......take a break right now but don't give up, upnorth....don't give up. I did for years and things got worse but when i found the right doctor it was such a relief. Hang in there.
Renee, sorry you too have had such a bad time with your stomach too....I do remember you mentioning it. Why must Dr.s be so rude and patronizing? This one said something about problems with women, periods and hormones too. He also told me that allergists can't diagnose wheat allergies.
ReplyDeleteI am going to take a break from seeking medical care and stick with my protein shakes and soups for now. I also have some Bio K which may do wonders...it helped a lot last time I took it when I had c. diff.
Thanks for commenting and empathizing.