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10yr 'stomach ache'
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garyw22923 posted:
Background: I am a 27yr old male that decided around 3mo ago that I had enough with psychiatric medicine. To sum it up, during the 14yrs that I was being 'helped' I never once benefited in any way. Today, I am drug and alcohol free, smoke about a pack and a half a day, exercise with my dog each day. My doctor had me on Zantac, Bentyl, and Compazine up until recently when I decided I could no longer handle the side effects. The Bentyl was sedating enough to limit my activity, taking Compazine in addition to that was a recipe for being brain dead no doubts about it. I saw no point to continue and did not understand the true point of Zantac so I stayed on that until today when I saw a doctor. Where I gathered from what she said that the zantac would only take action after being taken for a 2 week or longer duration. I explained that I had been on prilosec (which is basically the same thing) for months on end in the past with no noticeable effects.

I don't know what to do anymore. I've been to the ER enough times in actual debilitating pain that the last time was a perfect example of their routine with me. Go in, get to the back, they ask me if it's the same thing which I confirm, they start out with the basic nausea/diarrhea combo with saline fluids and something small for pain, last time was toradol. They kept me under observation and have a chance to actually see the amount of pain I'm in, then they stop screwing around and last time gave me dilaudid. Fentinyl is another popular choice. I'm allergic to morphine though. Either way, I think they gave me a double dose of the pain meds but it may have just been a regular dose. Either way, didn't touch the pain so I asked to leave and they discharged me. That's all pretty typical of both the emergency and general medical care that I've received. Treat the symptoms, wait until I stop complaining.

At this point, I'm really truly trying to clean up my life and do something with myself. Since going off my meds I've changed my life into something I never though possible and I'm just getting started. I started out not even willing to take OTC pain relievers. I have now come to believe that treating the body in a way that does not affect the ability of the mind is okay. For 10+ years I've had diarrhea. For 3mo (since going off my other meds) I've been unable to sleep regularly. For the past 2.5 weeks I've been doubled over in 10/10 pain. Past 2 weeks I've been nauseas and or throwing up every day, running a low grade fever, and have had periods of getting extremely dizzy and light headed. In the past several days the number of bowel movements occurring per day has increased to an average of about 20-25 times per day.

I must stress that this is merely an episode of a previously existing condition. In the past 10yrs or so, I've gone to the doctor for stomach problems as much or more than any other complaint. Only rival of that would be head pain. Of those previous complaints, at least 3/4 of the visits made were from issues relating to this. I've tried every doctor, they don't have a clue. I've tried the hospital countless times and they don't bother with CAT scans or anything anymore, my last one was less than a year ago. They've run every test they usually run. Nothing. I've been to every GI specialist around, they've all told me to change my diet and to eat yogurt. This is NOT something yogurt will cure. The specialist is booked a month in advance, I'm already on the schedule but for a month from now.

At this point, I have simply run out of options. I do not have any medical professional available to me that has a clue what's wrong with me. I will answer any and all the questions I can. I know this is a lot of information all at once and is admittedly a gross summarization of a 10yr ordeal. Any help or advice will be appreciated. Those not requiring long term use of medications is strongly preferred.
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ohmygerd responded:
Food intolerances can cause severe digestive issues. Many people are intolerant to gluten or dairy or other foods. Most doctors do not even mention food intolerances so you have to be your own detective. Start by keeping a food diary to see if you can determine which foods may be causing you difficulty. Try to find a practicioner who will help you sort out if in fact you do have a food intolerance. When you see the specialist ask him about food intolerances. Many of us here on the message boards do have food intolerances but it took many of us much pain and suffering before we got some answers. Good luck.
 
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garyw22923 replied to ohmygerd's response:
As I said, I've heard and tried the food intolerance route. That's not it. It's just not, I've investigated, I've kept track, nothing. This is not a food intolerance.

Last night I ended up in the ER once again. My stomach was spasming uncontrollably eventually subsiding to a lasting tensed up feeling. I spent most of the night tensed up, fist and eyes both clenched tight despite repeated doses of pain and nausea meds. A new cat scan reveals the same as before which was normal with the exception of a minor inflammation of the colon. Spent today recovering from all the narcotics while still in horrible pain. Will focus on contacting the specialist in an effort to convince them another chance at getting on the cancellation list again.
 
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islandgirl5126 replied to garyw22923's response:
Having suffered with GI issues for the better part of the last 20 years, my heart goes out to you. You mentioned having had a CT scan, but didn't say anything about whether a HIDA scan or a Gastric Emptying study have been done. The first measures how well the gallbladder functions, the second is self explanatory.
 
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garyw22923 replied to islandgirl5126's response:
Today has probably been about the most painful day overall that I can remember having. Not just my stomach, not just not generally feeling good, but more along the line of every single inch of every single part of my entire body just down right hurting. Nothing independently hurts, just everything adds up to feeling like total crap. Stayed in bed until around 6pm even though I was awake most of the time.

I do not even know what a HIDA scan and I've never had a gastric emptying study done. I've been tested for h pilora or something like that but that was negative as well. I'm now back on the cancellation list at the specialist. I'm out of the small amount of vicodin I got at my last er visit. Which sucks because it was the absolute only thing that would even come close to handling the pain. At this point, I'm simply looking forward to ending the pain.
 
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calgal37 replied to garyw22923's response:
What did they chalk up the 'minor inflammation' of the colon to? There's nothing minor about inflammation of that area of the body and can indicate problems such as inflammatory bowel conditions including Crohn's colitis, ulcerative colitis, etc. In some forms of IBD, people can have symptoms for many years before a diagnosis can be made. Although U.C. does not usually result in stomach pain, Crohn's and MC can.

Although symptoms of GI issues can be similar in a number of conditions, some things you're relating could suggest celiac disease with concomitant problems that can be associated with it - namely microscopic colitis.
 
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garyw22923 replied to calgal37's response:
This is the first chance I had enough energy and time to reply. No one can explain the inflammation. At the moment I'm extremely sleep deprived largely because I've been in too much pain to sleep. My low grade fever continues as does vomiting despite compazine, and diarrhea despite pepto. I only have one dose left of a course of Flagyl, I finished my course of cipro this morning. I feel as bad if not worse now than before I got the meds. I am extremely thankful to my doctor who prescribed a medium sized script for vicodin. He was very clear that this was all I was going to get until I saw the specialist. I called them just this morning and they are booked solid with not cancellations or openings in sight. I have been taking the vicodin in my opinion less than I should if anything in attempt to be responsible and make it last. Basically if I'm not in enough pain that I would seriously consider going to the hospital if it wasn't such a hassle. Even then I almost always just take one and add a tylenol on top as my doctor suggested long ago. Keeps me able to get around for the most part, doesn't really do anything for the pain though. I'm just not so tense that I can't physically move around.

Just because I came across this a few moments ago, in addition to a CT scan the other night, I've also had an extensive blood test that I have the results from. All normal.

My father suffers from gastreotitus or something where his stomach is just simply unable to absorb anything from what's in the stomach. Dunno. My mom's side of the family has every stomach related problem known to man at some recent point.

I'm seriously starting to wonder what a scoping would be able to find that all these other tests couldn't and if all those tests couldn't find it, how serious could it be?
 
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garyw22923 replied to garyw22923's response:
It has been quite a while with many changes and events. I made it to my appointment with the GI specialist. I have a colonoscopy scheduled for the 29th which is day after tomorrow. I have made several more visits to the ER. On the last ER visit the doctor told me with my mother present in a very blunt way that he thought I was drug seeking and would not entertain my attempt. That same night I was rushed to a different hospital that is based of the state college via rescue squad where I was admitted after a night spent getting injections of dilaudid and fentenyl with no improvement. Spent 3 days in the hospital enduring what I consider very unjust and counter productive treatment which ended with me insisting on being discharged repeatedly before finally being released at which time I basically ran 1.14 miles in complete panic as a result of the treatment I was given. Since then I have made another visit to my family doctor who wrote a very large prescription for Vicodin. I am in need of his advice on the exact direction for use of that though. Currently, I am only medicating with the intentions of not hurting a great deal with my every step when I'm moving around. I want to decrease my pain to increase my functionality. I am keeping detailed records of my overall health and Vicodin use.

During my admission to the hospital I was told that I had C diff and was started on another course of Flagyl. I have been told that in the more advanced cases, the C diff can lodge itself in the ripples of the colon beneath a layer of bacteria that standard treatments can not penetrate. I have been told that in those cases, the infected portion of the colon will need to be removed. If complications arise from this procedure, a Colostomy may need to be performed. I have been told that it is still unknown if I also have Chrons or some form of Colitis. To my understanding, neither have any real cure and both will require the use of medication for the rest of my life. I have been told repeatedly by numerous medical professionals that there is a chance that after everything that can be done is done, I will still need a lifetime of pain management with narcotic pain relievers. I have been on my current vicodin dose for only 2 days and I already feel that my quality of life is being impaired from being spaced out while still being unable to rid myself of anything more than the most severe pain.

It is obvious to me at this point that my personal situation and C diff infection is very advanced. I am nearly certain I will require surgical removal of a portion of my colon. I am currently of low enough moral to expect the worst case scenario and am faced with the worry of having a colostomy by the time I turn 28. I am admittedly stuck on my pity pot. I'm very nervous about the results of my colonoscopy and my future treatment and complications that may arise from that. I have many questions that only time can answer. I am determined but doubtful.
 
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calgal37 replied to garyw22923's response:
Gary, C. diff can be difficult to handle. If you haven't seen an infectious disease person, that should be done. In some cases C. diff can't be handled via flagyl. It may have to be treated with another form of antibiotic. If that fails, the up-and-coming form of treatment if fecal transplantation.

There is a place on the web to check. It's a board that I believe is still active at www.cdiffsupport.org . That may not be exactly correct, but it should give you a way to get to the current board.

As for the possibility of Crohn's or another form of IBD, there are medications that can be used to treat them. You may want to check with the WebMD Colitis board. There are some great people there who should be able to give you more information and help.


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