Hi everyone. I haven't posted on this board in a while but I used to, back in the beginning of my symptoms. I have been having terrible stomach pains since October of 07, so almost one year now. I went several months recently without any stomach pain, and now I'm having it several times per week again.
The pain typically comes on at night. I used to think it was entirely related to fatty foods, or very spicy foods, but now I'm not certain (this week it seems to be unrelated to what I eat). The pain is epigastric. Right smack dab in the center of the very upper portion of my stomach just beneath the breast bone. It's a terrible burning sensation, that won't let up for several hours. Nothing alleviates it. I can take antacids, Carafate, Bentyl, a Darvocet or some Codeine, with no relief whatsoever. When the pain comes, I basically have to just deal with it. The only thing that has alleviated the pain was IV pain medication at the ER. However, who wants to pay a $100 copay just to get pain meds, and have to take the next day off from work, and be out all night in the hospital? It is not practical. And anyway, the ER docs that saw me 4 times in about 2 months probably think I am a drug seeker, which is far from the truth.
The problem is, this pain is debilitating. When I experience this pain, I cannot speak, walk, move. I am paralyzed with what I consider to be the worst pain I have ever experienced in my life. It lasts several hours and is unrelenting.
Starting in November of 07, I went through the entire gamut of medical tests. I've had 2 HIDA Scans with EFs of 36% and then 79% several months later. The first HIDA scan (at 36%) recreated the epigastric burning sensation. The second scan caused queasiness only. I've had an upper endoscopy that showed some very minor irriation but not signifiant enough to be gastritis. No ulcers. I don't have celiac. No cancers. No H.Pylori infection found in the bloodwork or biopsy. It's not IBS because there's no relation to my bowels. Protonix made no difference after several months of taking twice the maximum recommended daily dosage. Same with Nexium.
I have found the most relief by taking Carafate 4 times per day and Bentyl 30 minutes before eating. In addition, my diet is very, very low in fat. It's also on the bland side. I have gone from a healthy 120 pounds in October of 2007 to 97 pounds in March of 2008. At that time I started on the Carafate/bentyl combo and have been able to increase my fat a tiny amount. I have been steady at about 103 pounds for four months or so.
Last night I awoke at 2 am with terrible epigastric burning. I had taken some Nyquil at bedtime, around 9:30 pm. I am wondering if the alcohol somehow caused the pain? Prior to bed I had a bowl of lowfat cereal with skim milk so it seems unlikely that the milk caused my symptoms.
If anyone suffers from this condition, please talk to me. How do you cope? I find it so difficult to eat anywhere but my own home. I am discouraged. And truly, every day around 5 or 6 pm I start having some pretty strong anxiety about whether or not I will be in pain tonight or not. I know that stress can play a big role in NUD, so is it possible I'm exacerbating my own symptoms with my fear?
What meds have you found that work? Anything? Does anyone take an antidepressant or antianxiety medicine?
I'm getting married on October 11th. More than anything, he and I would like to start a family as soon as possible. How in the world would I ever have a healthy pregnancy if I cannot tolerate eating more than about 5 grams of fat in a sitting? I can't imagine that it would be possible for me.
We corresponded several months back when I too was spending more time on these boards. After having two HIDA's done-- one that came back at 7% and another that came back at 18%, I figured that I couldn't put off having my gallbladder taken out any longer. It came out 17 days ago, and so far I feel pretty good. I'm still eating very light and low fat, but I don't have a lot of digestive discomfort, so I'm happy about that.
Several of my GI doctors, before I finally got one to agree to a HIDA scan, thought I had non ulcer dyspepsia. But I must say, I've never had the amount of pain and discomfort it sounds like you've been exeriencing. In fact, several months before my surgery, i felt like I was getting better, but I knew my gb was still messed up, and the pathology report confirmed that it was chronically inflamed.
Is there a chance that you could get a third HIDA scan? The only reason I ask is that your problems sound like gb (of course, everything sounds like everything else) and the fact that you had such different numbers is a bit puzzling. Anyway, I truly feel for you. What a horrible thing to have to be going through when you're planning a wedding-- this should be the happiest time in your life.
When I believed I had NUD, I tried all sorts of things that didn't really help-- Mastic Gum, Digestive Enzymes, etc. One remedy that one of my GI docs was familiar with is called Iberogast. It didn't seem to help me, but then again, maybe NUD wasn't my problem (Although I still believe it could be until I know for sure that the gb surgery has solved my problems-- which could take a few months). Anyway, they have the product on Sea Coast vitamins. It's made up of a lot of different herbs that are known to stimulate digestion. You put 20 drops of it in water before each meal. Perhaps it's worth a try for you? Do a search and see what you can find.
Otherwise, I don't know what else to say to reassure you, except to say how incredibly frustrating this must be!!! Try the Iberogast-- it certainly can't hurt. It didn't cause any weird side effects for me and is all natural. Otherwise, it may not hurt to look into seeing a homeopathic doctor or an acupuncturist....before I got the negative results of my HIDA, I was willing to try anything!
One more thing I wanted to mention....though I HATE when people imply that this stuff is "all in your head", I'm sure that the anticipation you go through every night before the pain starts does not help. I would definitely urge you to ask your doctor for anti-anxiety meds. I take klonopin and I believe it helps. I don't believe that the source of our problems started in our heads, but I do believe they are exacerbated by them. Also, in order to relax yourself, try something called EFT-- Emotional Freedom Techniques. They have lots of information on it if you do a search on the web. Also Kaiser has some free relaxation/guided imagery downloads that are great. I listen to them on my iPod and they're quite comforting. I guess at this point, nothing would hurt, right? Good luck and keep me posted....
Sorry to hear that things have not gotten any better! You know, you mentioned that you were pain free for a few months, and then the stomach problems started up again. It definitely makes me wonder if the fact that your wedding is so soon and that your mom is undergoing radiation is just adding to the stress-- and that stress manifests itself in the form of stomach problems for you. Which I know if frustrating when you feel like you're handling everything fine otherwise, but this could be your body's way of telling you to slow down. Having three jobs in itself sounds daunting!
Nobody wants to feel that they can't handle stress-- especially when our culture seems to thrive off of it. But I have plenty of friends who have a lot of stress and either get sick a lot, or have headaches, or some other type of problem that is just not stomach related. When I started a new terrible job three years ago after being in a job I loved for five years, I thought I was coping really well. Then I started getting weird facial tingling and numbness. I had a consult with a neurologist who said he thought it was "anxiety" and I thought, "But I didn't feel anxious!" But looking back, I realize and know now that it was. And being on anti anxiety or anti depressant meds is not a sign of weakness or anything to be ashamed of. Some of the most together people I know are on meds. And I am grateful to be on them myself!
Again, if you can find a way to relax thru guided imagery or soothing music that could help. Look into meditating, perhaps. Anything where you set aside half an hour a day for yourself to just RELAX. It could help.
I hope your new GI doc is helpful. That's promising! As for me-- I don't know how the removal of my gb will pan out, but I'm hopeful and realistic at the same time. I had a small setback the other night where I ate and drank too much and paid for it. But I'm trying to have Patience, Love and Compassion for my body (as my therapist advises) and just keep doing what I'm doing. Perhaps with the help of your new doc and once your wedding is over, you'll start to feel better. I know that once I figured out how to "work around" my stomach issues when it came to things like eating out, I started to feel better stomach wise. And findng a new and helpful doc seemed to make a difference too...good luck and keep us posted!
I couldn't agree with you more. With everything you said.
I was telling my fiance last night that I'm at the point now where if the new GI tells me that she thinks its stress related I won't even bat an eye. I will just take the meds she has given me and be open to the idea that this is my body's way of dealing with stress. I don't feel stressed. But I always feel a sense or urgency over all the things I have to do. So I KNOW in my heart that if stress is not the cause, it is AT LEAST exacerbating my symptoms. I now accept that my pain is real, and it's going to stick around, and even though it could be caused by stress, that pain is real regardless. That's the part that messed with me before. My pain was real. But to have someone say that it's all in my head....well seriously, that just underplays the severity of the pain and makes you feel crazy. Not to mention angry at the docs for not "believing" that your pain is real. But I now know and agree that my pain is real even though it could be caused by stress.
I've been thinking lately that I will try some meditation. I "meditate" to a degree. I did it last night. I was at work until 8. Around 7 I started feeling ill. So I drank some tea, and just kept calmly telling myself that it was okay. That I wasn't sick, that I was stressed and that I would be okay. "Relax, April." I kept repeating this over and over again. I went home, got ready for bed and climbed into bed and did the same thing. Kept trying to soothe myself mentally. I started crocheting and counting my stitches while watching a movie. It was nearly impossible to do this while in such discomfort. But I kept going, and within an hour it was gone. I felt fine again and was able to have a little something to eat. I find that if I ignore the pain by distracting myself and talking myself through it, it can be very helpful. If I just give into the pain and lay down and feel sorry for myself, it doesn't want to let up. It continues to hurt. Mind over matter? It seems that way.
Did stress cause my issue in the first place? Or do I now have very bad anxiety as a result of the pain? I can't deny feeling scared every night now, waiting for that pain to start. Am I making a physical condition worse with worry, or is it 100% a psychological condition to begin with? When it started, things were amazing in my life. I cannot link my symptoms to stress until this spring, but even then this spring my symptoms were under control. The pain started after Mom finished with her last round of radiation. It never happened during the treatment. I was strong and made it through. It never seems to happen when things are their most hectic. It happens after that storm has passed. So, I don't know. I'm open to anything right now. Basically, any educated medical opinion of my condition will sit well with me right now.
But, it's frustrating!
Are you having any post surgical woes like so many people do, or are you holding up well?
I'm glad you are helping yourself to relax and that it seems to be helping. When I first started going through all of my stomach stuff, I was angry when the doctors said I had Non Ulcer Dyspepsia. I felt like it was a cop out diagnosis. But now I feel that if that's what I have, I can deal with it through diet and stress management-- as long as I don't have uncomfortable digestive side effects. So it's good that you are open to being told that that's what you have and realizing the role that stress plays in exacerbating it. In my case, it's possible that I have both NUD and a bad gallbladder. So in that respect, not much might change for me even after the gb surgery. But it is true-- things seem to hit worse when the "storm has passed". It's like your body is finally saying, okay, it's my time to respond to everything that I just dealt with. In college it seemed like everyone I know got sick after finals were over!
I hope that possibly going on anti-anxiety medication, plus drinking chamomile tea, crocheting, and telling yourself to relax will continue to help. I feel that I'm doing everything I can to relax too. It doesn't always help, but the positive changes I've made since this all started does seem to have made things better....it took a little time, but eventually I started feeling better. I'm currently dealing with some digestive upset due to what I think was overdoing it a few nights ago, but I'm trying to be optimistic that it will pass....good luck and take it easy!
Hi mizzaj, I can relate to alot of these problems but I'm wondering a few things like what is IBS and how did the pathology report show that the gb was chronically inflamed. I think my so called doctors don't even know what to do with anything that comes back not normal, they only know what a temp. is and how to write a prescription I swear it. I'm personally losing my mind because like you all I can't work and when I feel good I do my chores like shopping, mow the grass work around the house etc. Because when I eat I'm not sure whats going to happen and I might not even stay awake. Really I need to sleep like I was drugged. For up to 6 hours after a normal meal. Now when I go to the grocery store I don';t want to get anything but I have to to live. I know how it feels going crazy everyday and my daughter thinks I'm getting mentally ill because I'm so withdrawn when I don't feel good. Anyway let me know, my gallbladder was 36% ejection fraction and normal is anything 35% or better so I kept it so far. My pain is all over the place now and I think when they figure it out I"ll have a couple months left to live or something, it sucks. Mike