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Old 01-31-2008, 04:41 PM   #1
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On/Off Severe Pain, Nausea, Anxiety(ish)

SORRY this is long, but I had typed this up for my doctors, and figured I would use the whole thing on here to give as much info as possible. Thanks to those who read it.

I am a 26yr old male, who has experienced abdominal pains for most of my waking life. As a kid, they never bothered me past having to sit down for 5 or 10 minutes, and asking my friends if this happened to them. It did not....

Fast forward, through high school(00’) and college(05’), and still, Around
my freshman year of college, I also developed a mystery back pain that has yet to be diagnosed.

For the back pain, my doctor finally put me on Ultram, until we could figure out what was wrong (we have no idea). Ultram is a weak pain killer (thankful for it nonetheless), so I learned to live with the leftover pain and continued to use Ultram daily. The abdominal pain continued sporadically, however unsevere.

Fast forward to Jan 07'. Worked in a Costco selling phones. That’s when my
abdominal pain started getting worse. I would be having a fine day, and the attack would hit like a ton of bricks. I have a very difficult time explaining the attacks.IT IS LIKE A SEVERE DULLING, PULLING PAIN, A RUSH OF ANXIETY, SEVERE NAUSEA AND SEVERE CRAMPING ALL AT ONCE. IT FREEZES MY BODY, MAKING WALKING, BREATHING, EVEN TALKING HURT.

It would hit me all at once, which usually would bring me to my knees, where I could pray, cry, heave and sometimes throw up without being seen. Once these attacks started, they were unstoppable. I would leave work only to pull over and throw up all the way home (5 to 10 times). Once home I would crawl into bed and sleep, for hours.

This continued, off and on, NOT nearly everyday until Sept 07’. In Sept 07’, I had what I consider to be my first "Major" attack. It was exactly like before; but the pain is SO INTENSE I almost couldn’t move. I literally got stuck in step. When the pain hit its peak, I have severe nausea, except now it wont stop. There is no closing my eyes and sleeping it off. I throw up to the point of expelling blood. When the pain hits its peak I also cant control my fingers, toes, or vocal screams. My fingers curl up like I am having a seizure, or like someone who has had polio. My toes curl so far back I get cramps in them. My muscles spasm so badly, my legs become full of “charlie horses'”. The anxiety with each wave of pain is excruciating, causing me to hyperventilate and throw my arms, legs and generally entire body around the room. Needless to say I went to the E.R.

My first E.R. visit was the worst because I was sure I was going to die. A Long way from it of course, but the pain was just too much. They admitted me and I stayed in the hospital for 4 days while they ran tests. They tested Gallbladder, Appendix, sphincter of oddi, for preforia, gave Cat scans, MRI,
Peptide tests, Colonoscopy, EGD, ECG etc etc etc. Everything came back negative, except a slightly high heart rate and slightly elevated preforia levels. In the meantime I am drinking sprite, full of morphine and happy as can be. I go home.

It wouldn’t be the end of September when I would make another trip to the E.R. To save time, I will not go into every E.R. visit, but know this...since Sept 07' I have been to the E.R. AND admitted to the hospital 7 separate times. I have been to the E.R. an additional 2 times as well, but was not admitted either time. We jus have a procedure now; go to E.R. get shot up till I pass out, get carried home and put to bed.

Interspersed in each hospital visit were more tests here and there. One such
test was the “Pill-Cam”. Which is just what it sounds like, you swallow a camera the size of a pill and wait for the results. EUREKA! Maybe. They found several ulcers and ulcerative tissue in my lower small intestine. This still has not led to diagnoses, but we have a possibility as to what could be causing my pain. They have thrown around terms like IBS, Crohn’s, Ulcerative Colitis etc etc, but I think we are waiting to get a biopsy of it at this point to narrow it down. (I get confused as to what procedure is next, with so many appts lined up)

Every day is a battle now. The mornings are the worst, and I can plan on
laying on the couch, heating pad against my stomach for 15 or 20 minutes to get any relief at all. My doctors have (finally) given me Hydrocodone, Dilaudid, Xanax, Baclofen, Entocort, Hyscomine, and Tigan, an
anti-nausea. And as I said earlier, Ultram for back pain. I recently quit the Entocort cuz its expensive and didnt seem to be helping.

I never thought of myself as constipated, however my GI doc has said I need to be having a BM almost everyday. He put me on Miralax, which made me regular, but did nothing for the pain problem. I then quit the Miralax, but remain in a more "normal" BM cycle. The BM ranges from soft and diarrea like, to hard "have to flush at just the right time to avoid a backup" types. Neither type seems to make the pain any worse/better. My pain is usually NOT associated with a BM, however sometimes they coincide and when that happens, I will literally pray to god to make it go away. The pushing and straining, combined with the pain attack will usually just about end my day.

As of right now, my pcp has said I am beyond his help. He says he flat out doesn’t know how to treat my prob, and that he is going to work with some of my G.I. doc's to get into K.U. Med for further testing. We wanted to go to Mayo Clinic, but since Mayo is not in my insur plan, they want me to try K.U. Med first(live in Kansas City). But even that is a battle, as my doctors struggle with the web of approval papers, referrals and the like to get me approved.

While I wait, Im getting second opinions to help prove I need to be referred. I also went pain management last week. With my kind of pain, I wasn’t sure what they would be able to actually do for me, as this isn’t joint pain, and I already had pain med’s. What I was hoping they could do was help me with questions ABOUT my pain meds. Primarily, I feel almost guilty taking them, even when I am in pain. I don’t know why this is either. I find myself trying to conserve the meds for when “it really hurts” even though I am on the ground writhing in pain. My primary, who prescribes them all, makes very clear that these drugs are very powerful, addictive, and that they are only for short term use, hinting that he doesnt even really want to give a refill. Well, I can only make this as short term as my body, and modern medicine, will let me.

So, I go to pain management to get advice, and am thrown off when she takes one look at my med list, says you cant be on these narcs, you are too young, and ALSO, you need to get off Ultram, because this is what is causing your ulcers. I was confused?!? 5months of E.R.’s, Hospital stays, countless specialists, tests and scenarios, and NO ONE else has told me Ultram is the cause? And all it took was her looking at that medicine on my list to tell me this? At first I shook my head yes, and agreed to try tapering off Ultram and see what happens. However, when I got home and started to read, it just didn’t seem right. I couldn’t find ONE example online on forums and info sites about Ultram causing this serious of a side effect. Unexpected addiction and dependence? Yes. Creating ulcers and ulcerating the remaining tissue? No. And why had no other doctor or specialist even thought to mention this? It just didn’t make sense to me, and the more I thought about it, I realized she wanted me to get off a med helping pain in another part of my body, right in the middle of fight with excruciating pain in another part of my body. Why do this to myself? That’s just what I need right now while I am huddled over with a heating pad against my stomach…a sore back as well.

Winding down, although this is def the same problem I have had my entire life, it has def. changed how it is presenting itself. Although I can distinctly
remember some of the same downward spiral feelings in the pain when I was
younger, it has added power 100 fold, and has even changed from when this first became an issue in Sept 07. Even back in Sept, although I would have occasional pings of pain throughout the day, it was not an all day every day thing. This is no longer the case. EVERY morning will start with severe pain almost as soon as I open my eyes. I roll out of bed and go straight to the couch for the heating pad. It will usually keep me hunched over for about 15 minutes, at which point I MAKE myself get up and shower and shave for work. Once I get out and going, what was once a minor annoyance sprinkled throughout the day, has become the focal point of my day. I MUST have my pain pills on me when I leave the house, because it is not an issue of IF I will have an attack, it’s a question of how hard will it hit. I have a laydown lawnchair at work in the backroom so I can lay down throughout the day as it attacks. When I was prescribed the narcs, I tried to take them only every couple days when it really really hurt. But in retrospect, I realize I was simply suffering through days on end, and taking the pill as a reward for days of suffering…some final relief after a week of pain kinda. Since then, I have started to take the pills more. (1.) because as I said, the attacks are an everyday almost all day thing and (2.) why am I making myself suffer, when I have the means to stop the pain?

My only worry however, (the pain management specialist never answered my
questions about use), is the fear that when I go back for refills I will be told
No, or that I am using to many. I don’t want to become reliant. I don’t want to become addicted. But I am in pain almost all day. What am I supposed to do? Do I just suffer through it like I had been doing? It ruins my days and nights when I do that, but at least I am not taking narcotics. Or do I save my quality of life for the time being until we get this figured out. Although the ulcers are in a tricky place, I would like to believe this is an issue that CAN be fixed and that within a year at the most I could be pain free, or at least greatly reduced. Enough to toss the narcs. Do I dose accordingly in the time being? Or grin and bear it?

Thanks for any feedback!

 
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Old 01-31-2008, 11:51 PM   #2
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Your symptoms sound exacly like some trouble a friend was having. He too was in severe pain radiating from the abdomen as well as throwing up to the point of bleeding. He was diagnosed as having chronic kidney stones so many in fact that when they removed several of them, 12 at last count, that his mother made a twelve month calendar out of the pictures of them

The doctors had no idea untill he had x-rays and a cat scan. The docs said it was due to his excessive cunsumption of coca-cola (at least a 12 pack a day since he was old enough to buy it himself) for at least 12 years

Hope this helps

 
Old 02-01-2008, 10:14 AM   #3
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Thanks for your reply. I would have thought they would have caught kidney stones when I was going through all of those tests...but you never know so I will ask about it in my next appt. If it were, it certainly wouldn't be from cola consumption, as I only drink usually 24oz soda max on any given day.

 
Old 02-05-2008, 12:35 PM   #4
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

..bump..bump..anyone else?

 
Old 02-05-2008, 02:30 PM   #5
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Hey Mo...I don't know if I can help you any, but I'm on Social Security Disability due to chronic pain caused by IBS, Neuropathy brought on by lung surgery, and now the latest, arthritis of the upper spine. My initial reason for going to my PCP was pain in the lower left quadrant that was a dull achey pain, with occasional sharp jabs that almost put me on my knees. My doc referred me to a Gastroenterologist for further testing. After x-rays, CT Scan, MRI, colonoscopy, endoscopy, Barrium Follow-through, blood work-up and probably a couple I don't remember, the GI doctor said it was Irritable Bowel Syndrome. I was given opiate pain meds, starting with Hydrocodone, to keep me fairly comfy, and since I didn't due manual labor on my job, I was able to keep working. It got worse and worse, so I went to another GI Doc for a second opinion. He ordered a CT Scan, and while they were doing the scan of my gut, they included they lower part of my lungs. That's when they discovered a "dark spot" that looked suspicious. They ended up doing two needle guided biopsies, to get specimens to for tests to determine if it was malignant. Four different lab people did the testing and in the end two said yea and two said nay. So off I went to surgery, not knowing if I had cancer or not and if I would wake up with one lung or two. I happy to say, I don't have cancer, but it added the nerve pain to my list of conditions I have to deal with daily. I have been off work for about four and a half years now and I won't be going back.

I've told you all of this to have you to try to understand what can cause people pain and at times you just can't cope with it without the benefit of medications, and btw, I consider Ultram just above Tylenol in pain killing aspects. Why are you taking it, when you have Hydrocodone and Dilaudid?

My wife also went through some bad times a couple years ago. She developed Microscopic Colitis. She had never been in the hospital, except to have a daughter. She got sick at work and drove herself home throwing up all the way. When she got here, she ran for the bathroom. Diarrhea and throwing up at the same time. This lasted two and a half months. Four trips to the ER and four hospital stays. They finally got it under control with Prednisone and the Endocort. Have they tried Prednisone with you? Have you been put on an antibiotic like Flagyl or Vancomycin. It might be worth discussing with your doctor. In 2005 I came down with a condition know at Clostridium difficile or C. diff. Those are the two antibiotics they commonly use to rid you of C.diff, which is a condition where you have uncontrollable vomiting. C. diff is a condition that can cause uncontrollable pain too.

Sorry this has become so long and drawn out, but it seems to me, you do have some sort of Colitis or IBS. Maybe even the Chrons, which you said they already looked at. I am on Methadone today and do not work. I am retired on disability. Follow up with the doctors at Kansas University and see if you can get some sort of an idea what this could be. Even though you're young to some doctors, doesn't mean you can't be in pain, like some docs indicate. Good luck, and please post back if there's anything I can give you some information about.
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Old 02-07-2008, 03:00 PM   #6
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Hey Director. Thanks for the reply. Sounds like you have had quite a run with the medical field.

First off I would agree with you that Tramadol pretty much sucks as a pain killler. I am taking it, regardless my other more powerful meds, because that is all they would give me for my back pain BEFORE all this other stuff started. Believe me, I argued for something more, but afterwhile, you start to look like a drug seeker, especially when you make the mistake of going in asking for drugs by name.

I have tried, and actually just quit Entocort. You spelled it differ, but I think we are talkin bout the same thing. It was a 9wk program, and it didnt help noticibally, which is why I just quit it. Prednisone no, but they did try to get me to try Pentasa, which I refused b/c it is dangerously chemically related to asprin, which jus may kill me.(allergic)

The antibotic's may be something I discuss with my doc next time I go in. Just to see what he thinks about it. Although this is considering I "find" a doc, since my primary care has already said "dunno".

I am not even sure if I should still be calling him. Heh. I almost feel like I am using him at this point, because his only roll right now is to refill my scripts, and refer me wherever my specialsts think. (Insurance woes)

I am jus so fed up with doctors and the whole rat race right now. No one knows what is wrong with me, and every specialist I see now ends in the same thing...a referral. My last G.I. Specialist in Kansas City asked "Do you currently drink?" I said, No, I used to have a drink or two a wk, but have since quit with all this going on. His response.."Well...maybe you should start drinking again!"

Wow. I would rather have pain relief and an answer doc, but sure, a few drinks cant hurt on top of the xan and oxy.

 
Old 02-07-2008, 04:02 PM   #7
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Just chiming in that I am another with symptoms and no real diagnosis. I've had all the tests and my gallbladder removed due to it not functioning (I didn't have GB disease symptoms), yet I feel the same. Finally a trip to the ER found a hemorrhagic ovarian cyst and my CA125 to be slightly elevated, waiting for a repeat ultrasound to see if it may be causing the problems... not that you can suggest that problem to one of your doctors! If you have ovaries I suppose that really is a problem.

I just wanted to nod and say I understand! Up until 4 months ago I was very active and rarely sick. This is debilitating and frustrating to say the least. I also feel like a drug seeker when I have to ask for a refill of pain meds. I hate the way some doctors treat me but others are sympathetic (my GP has known me 10 yrs, thank goodness, so he knows there is something wrong).

 
Old 02-09-2008, 06:30 AM   #8
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Just wandering if you have been tested for intestinal parasites like Giardiasis (GEE-are-DYE-uh-sis)? My stepmom had similar problems as you and finally during her 3rd colonoscopy they took a biopsy and found the organinsm. I think that she had a prior bloodtest or stool test and the organism was not present. May be worth a shot. It took me 2 years to finally get a dx so I can relate to what you are going through.

 
Old 09-26-2008, 09:26 AM   #9
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

Hey Mo,

A lot of what you had originally described is alot of what I have been experiencing for the past 5 years. Still no "official" diagnosis. It started when I was 19, I started throwing up in the mornings on a regular basis. Went to the doctor and he ran an endoscopy. As it turned out I had 4 stomach ulcers. He immediately prescribed Prevacid (30mg per day) and severely modified my diet.

That seemed to have helped somewhat for another 3 months. At this time I was in college and therefore away from my parents and their insurance. This time, is was getting much worse. The constant vomiting turned into a daily thing. The wrenching got so bad sometimes, I'd pass out because I couldn't get any air at all, my stomach just kept convulsing. But since I had no insurance, so I just had to grin and bare it. Except a few times it got so bad, I was taken to the hospital approx (7-8) times. with in 1 year.

I had to drop out of college cause I was falling too far behind. I got a job that provided insurance. When I went to get checked out again, they ran a GB test on me. My ball bladder was infected and at 0% functioning. They then removed it the following week.

Things seemed to be getting a little better. The vomiting became more of a weekly thing rather than daily (thank God). At this point though I am used to living with pain, so I was able to grin and bear it and continue with working. Intermittently I would return to the hospital when the vomiting began to contain blood. Before I would just constantly throw up either bight yellow bile, undigested food, etc. But I had never thrown up BLOOD before. It completely scared me. I began to give up on alot of things in life. Nothing really seemed important anymore. I had been praying to God almost everyday. I'm not a profoundly religious person, but when science and medicine seem to be failing you, options become very slim. I no longer wanted to bother any family members or friends with my sickness or problems. I would feel incredibly guilty if I had to call in for work when the pain is just too severe. There was no position I could get in, or heating pad, or food/drink I could take that helped with the pain. At the hospitals, they would always run the same tests: CT scan, X-rays, gastric emptying study, endoscopy, blood work. Although, I must say my greatest relief came when they prescribed Phenergan suppositories. It definitely helped with the nausea/vomiting. Occasionally they would give me some pain meds, but they always seemed to upset my stomach and make me dizzy. All seamed to only reveal smaller issues. Such as: Slight Gastritis, once I had a 6cm mass on my right ovary, but nothing that explained my symptoms.

Eventually I got fired for missing too many days. At that point I had NO more insurance, l became so depressed and miserable. Began to make bad decisions like smoking pot. I am not an drug taker or criminal. I was raised in the mid-west and had never done anything like it before. And actually, not to incriminate myself here, but the pot actually helped take away my gag reflex, (for some reason crying also seems to help with the gag reflex) settled my stomach, and made myself have some sort of appetite so I could actually have something to throw up instead of dry-heaving ALL the time. Because when you throw up constantly, eventually you get to the point where you dont want to even eat anything, because of the inevitable effect.

So, anyway I started praying. Not only did I get worse and worse, but now medical bills were piling up and I had the worst outlook on life.

Now, I everyday I get up, throw-up for about 2-3 hours, then go to work. Normally I'd be fired by now, but I worked it out with my job, that I can just come in as soon as my stomach settles enough. They came to that conclusion because I was coming to work, sitting at my desk, and would have my trash can next to me to throw up in and everybody around me all saw I really was having medical issues.

Today was a bad morning and I even had to call in sick for the whole day. I went to the doctor again and now he is prescribing me, Nexium, Phenergan suppositories and this supplement called Gaviscon (never heard of it until today). With my usual now cynical outlook, I'm not convinced it will work. At one point on 9/11/08 I was in the ER and the attending said I should look into a condition called preforia. She said it was a rare condition that caused a chemical imbalance in my GI system.

I would love to get tested for this but, right now I have too many other bills and medical tests to pay for first.
Maybe someday I'll get there...

 
Old 09-26-2008, 02:27 PM   #10
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Re: On/Off Severe Pain, Nausea, Anxiety(ish)

I don't have time to read the whole thread, but I caught a few mentions of people losing their jobs because of poor attendance due to health problems.

For people in that situation:
I want everyone to know that if you have a serious condition that interferes with your ability to perform major life functions, you might qualify as disabled under the American's with Disabilities Act. If someone is throwing up all day, that sounds like a disability to me. It would definitely qualify as a disability under the FMLA. Anyone who is about to be fired should consider going out on a family medical leave right away. Most companies don't pay your salary when you're out of FMLA, but they can't take away your medical insurance during that three months.

Realistically, your chances of winning in court probably aren't good, (employers win most of the cases that go to court), but that shouldn't stop you from filing a claim and THREATENING to SUE. You might get something. Some states, such as New York, have disability laws that offer much more protection than federal laws. So it might be smart to file a claim with your state's discrimination agency, rather than with the federal EEOC. You don't need a lawyer to file a claim, but a lawyer might help you by mentioning all the key things to say when you file your claim. Also, judging from all the ads on TV, it seems that you need a lawyer to successfully get Social Security disability.

 
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