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Old 09-20-2012, 07:36 PM   #1
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Severe GI issues And other things, Please help me

Hi my name is Matthew and i am 19 years old. I'm posting this in hope of getting some help and advice on my situation. I have been dealing with increasingly worsening symptoms related to my throat and stomach when I first started high school. So, this started when I was 15. The first two years or so were marked by relatively mild nausea and sometimes throwing up bile and mucus in the mornings, I could not eat breakfast, however these feelings did not last very long and where completely gone by the time school started in the mornings. Things changed by the time I was a junior as it got slightly worse but it was my senior year when it got bad. I was 170 lbs when I started and I dropped to 160 because I could not eat at all from the time I got up (6:00am) to lunchtime (10:30). This time I had severe nausea and a tight gagging sensation in my throat. It became routine for me to throw up on the sidewalk outside, ( I didnt want my sister to hear). The nausea and gagging sensation lasted through the school day and sometimes later into the evening. In November of my senior year I got an endoscopy which showed ulcerative esophagitis and gastritis. I remember the doctor who performed the surgery point at the pictures and say " severe,severe,severe,moderately severe". It also showed I had GERD. I do not have copies of reports for this endoscopy however I had another one done 6 months later. This time I was diagnosed with erosive nodular esophagitis and duodenitis. The pathelogical diagnosis was squamous esophageal and gastric type mucosa with moderate reflux type esophagitis. Helibacter pylori bacteria was never found in the biopsies I had in these endoscopies. Im at my wits end with these problems. I also have a bulging disc that's torn in my Lower back that has devastated my strength. I was squatting 385 parallel for a max and then in the following days I had trouble bending and moving around and was diagnosed through x ray and MRI with degenerative disc disease and a mild bulging disc with an annular tear at l5-s1. This happened in may and June of this year. I'm currently in physical therapy for it but it has not helped and I am struggling to complete the exercizes. She knows and has contacted my neurosurgeon. I'm not sure when I'll go back to him but probably when I've done 6 weeks or so, I'm currently about 4 weeks in, going 2 times a week. I hope you guys don't mind how long this is but I think it helps to explain. Anyway, currently I'm seeing a Neurologist for neuropathy in my right side of my body. Brain MRI was unremarkable, apart from mild mucosa thickening in the sphenoid sinus.I have a followup on Tuesday. But honestly all of these problems, most notably the GI issues, are delibatating and absolutely crippling at times, and it has gotten very bad in the past few weeks. I have never used drugs or intend to. My appetite has decreased dramatically to the point of only eating 1 medium sized meal a day at best, and with that I get full very easily. All of this has taken an extreme toll on my mentally and physically, remarkable I've managed to maintain a bodyweight of 185 or so, however I usually am 195+. so you see I've dropped 10 lbs in just a few weeks. I know this is a Long rant and all but I need help and advice and just comfort. Im considering calling for an appointment with my GI doctor tommorow and explain to him. Its just plain crippling, and I acknowledge that stress and anxiety makes it worse, it's a viscous cycle, even with medications for it however it does not help. I have tried lexapro and klonipon. They both do there job but it does not help my GI issues. I have been to therapy, both my junior year and senior year, as part of an agreement for treatment. I think more thing that may have been the source of all of this was when I was bitten by my dog, on October 7,2009. This was my sophomore year and it resulted in me being the hospital several times and having surgery. I was on antibiotics for 6 weeks with a pic line put in. My radial nerve was severed in my right arm and even 3 years later only 80% has regenerated, and it it numb in some places. I had a nerve conduction test to verify this. I don't know what to make of all of this, that's why I'm posting, in hopes of getting some help and advice. Thank you if you managed to read all the way to the end.

Last edited by Matthew90; 09-20-2012 at 07:42 PM.

 
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Old 09-24-2012, 08:44 AM   #2
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Re: Severe GI issues And other things, Please help me

I am not sure what I can really suggest as it sounds like you have some complex and perhaps chronic conditions with no simple fix, but I read your post a couple times and I do really feel for what you have been going through. I suggest that you do whatever you feel you need to do to get help with your symptoms, hopefully there is much more they can do to make you feel better than they are currently doing for you. I am sorry you have had such a rough time with your health at your age, life is really not fair sometimes. Good for you for keeping your weight up! I know how hard it can be. I also feel for you - doctors seem to want us to be visually wasting away before they want to help us - they don't realize that we are already trying 110% to make ourselves healthy again, and we are there to see them because it is just not working and we have exhausted our efforts. I think that you are very in-tune with your emotions and your overall situation and I hope that your doctors can see that and do not blame your GI issues or any other issues purely on anxiety. Of course it is anxiety provoking when we are losing weight and cannot eat as much as we wish we could. I am glad that you perhaps got some relief from the psychiatric drugs, what you are going through is tough.

It is situations like yours where we realize that doctors do not know everything, medical science is really a medical art and healthcare professionals are prone to bias - especially when they cannot help someone that is young and relatively healthy that they know that they SHOULD be able to help. I wish you strength in being your own advocate - sadly you have to stand up for yourself if you want them to listen and to do anything. I am realizing this fact more and more. I understand what you are going through sucks, and that you are probably getting worn down by it all as it has been going on for a while.

My partner has been good in reminding me to decide what I "want" from each appointment. I have had multiple symptoms that generally make me feel very ill all over. It makes me want relief from everything all at once, and sometimes when I go to the doctor I feel so hopeless I can barely describe my problems that are bothering me the most as I feel like the problems have sucked away all my energy to even ask for help and then the doctors have a hard time deciding what to investigate and they feel hopeless to treat any of my symptoms. It seems to work a bit better if I give them bite-sized chunks, as then I also know that everything will hopefully eventually be investigated. I feel like the only person I feel empowered to talk about all of my physical symptoms with is my psychiatrist - but sadly she cannot do anything about my physical symptoms.

Try to pick apart each problem and make separate appointments and try to get a plan to deal with each of them soon so that everything will hopefully seem less hopeless, decide what you "want" from each appointment, and perhaps write this down. Maybe you want your GI doc to give you a copy of your endoscopies, decide whether you need another one at this time or decide on a plan for treating your current symptoms.

Maybe try to write down your main symptoms and write down the plan for investigations and treatment as they come up, so that you can look at this sheet and remind yourself that someone does maybe care and that you have a plan and are not alone dealing with all of these problems. Do not let each specialist wait upon other specialists to treat other specialists' problems first - they can all be investigated and hopefully treated at the same time safely. I think the key is that you are obviously struggling and it sounds like you feel that you cannot live with your current health status, and it sounds like you want to get to a place where you feel a bit more stable and able to cope with everyday problems. It sounds like these medical problems have been a bit traumatic for you, and that is understandable - for your age you have been dealing with a lot!

Sorry for the long reply - I hope I have come across okay I really feel for you and your frustrations with what you are going through. Don't be embarrassed to be a little pushy with the doctors - you are worth it.

 
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Old 09-24-2012, 02:45 PM   #3
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Smile Re: Severe GI issues And other things, Please help me

Thank you so much for posting such an in-depth and heartfelt reply, it means a lot to me. I am actually going to my neurologist tomorrow, so maybe he has an idea on e situation, and I also have an appointment with my GI doc on Friday, so I'm gonna ask for another endoscopy, as my last one was 6 months ago and Im fairly sure it's either the same or worse. I'm also going to explore other treatment, ppi's and antacids are just too weak to have an effect on something this severe and widespread, also the fact that it's chronic in nature and has been on going for at least 4 years. Anyway, I have also gotten all the endoscopy records like you mentioned which is good, but not good because I'm looking at the notes and seeing all of these diagnoses makes me sick lol. Again, thank so much for taking the time to read and talk and to me, it means a lot, and I hope we can talk again.

 
Old 09-30-2012, 02:20 PM   #4
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Re: Severe GI issues And other things, Please help me

No problem. I hope the appointments went well. Did the neurologist say anything helpful? That is too bad about the endoscopy results - but at least it is confirmation about why you feel so awful. Let me know how you are doing and if you found any new treatments that work. I have heard that PPI's can cause a sort of rebound acidity, so hopefully you can avoid that

 
Old 10-07-2012, 01:02 AM   #5
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Re: Severe GI issues And other things, Please help me

My child suffered from severe GI problems in the past, and he had his GI doctor. But I took him to see a naturopath to help with his gastric reflux and other GI problems because the GI wasn't able to help him. The first naturopath didn't seem to know what to say, but the second naturopath(an old guy) told me what I needed to do, and I did it. Happily, he was able to help my child to stop vomiting. During all this time, I still took him to his regular GI specialist because of the severity of his condition. But I found that the traditional doctors don't have all the answers and just work on one part of the body, when really the whole body is connected. If one part of the body isn't working, the rest isn't going to be able to function normally. Medicines often harm eventually rather than heal, so if their is a natural way to do something than do it. You can always fall back on the medicines if the natural things don't work. It takes courage to try something new, and something the doctors don't understand, but you seem to me to be a very courageous young man. With my son, it took many different things. But you know your body best, and what seems to work and not work. I think you are on the right track about one thing compounding on another. Your body is a machine that relies on being well oiled and cared for, so when one part goes wrong, the rest of the body has to work harder. It makes your system weaker. Your immunities get lower, you get sicker. But have confidence and don't give up! Think rationally what you are doing and eating. Make a journal of everything. That way you can just give a copy of it to your doctors without having to explain everything to everyone 12 times.
Have the doctors said why you would have degeneretive disc disease at such a young age? If you were 50, then I wouldn;t wonder so much. Have the doctors checked your pituatary glands? Do you get bad headaches?
Try to be calm emotionally, and find a support system to help you through this. Make sure you get a second opinion on everything.
Hoping for the best for you, K.

 
Old 10-07-2012, 11:13 AM   #6
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Re: Severe GI issues And other things, Please help me

After seeing a neurologist for neuropathy issues and getting a brain MRI done, it came back clear. This was 2 weeks ago on the 25th. I mentioned my GI problems, showing my labs, to which he suggested I try a gluten free diet for a month. I'm appreciative that he actually talked to me, however I've been tested for celiac disease. I made an appointment on the 28th to my GI doctor, in hopes of getting some tests ordered and to get this thing figured out once and for all. She took notes of my symptoms: nausea, appetite loss and early satiety, which is alarming because I can no longer eat big meals anymore and I have trouble finishing things I thought were snacks a couple months ago. I've also been having discomfort while eating and after. This is also new. She checked my abdomen and then ordered a ct scan with contrast and an endoscopy, which im having done this Wednesday, the 10th. The ct scan I had done last Wednesday and she called me that same day to say it was fine. Let me tell you, I suffered quite a bit prepping for that test. I had to swallow 2 bottles of barium sulfate, the test was fine, but it was excruciatingly difficult due to my condition to begin with. Anyway, I'm just waiting for this endoscopy on Wednesday. It's probably going to come out pretty bad, as it was severe to begin with. I just want it done and over with, the waiting is draining me of what little is left.

 
Old 10-07-2012, 11:24 AM   #7
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Re: Severe GI issues And other things, Please help me

As for my back, I've completed six weeks of physical therapy and thats pretty much it. It still feels sore and stiff and bending over has never been the same. As far as the degenerative disc disease goes, I'm pretty sure it was brought upon by my intense powerlifting from Jan-May. I went from 160-195 during that time and by the end I was squatting everyday, eventually squatting 385lbs, unfortunately that's when my back shut down. My ultimate goal was 400lbs, alas I was so close. My bench also went from 205ish to 245. Sorry if I'm preaching here guys but when you have the one thing in life that you worked so hard and long for taken away by a permanent physical injury that will by and large prevent you from doing it, it's absolutely crushing.

 
Old 10-23-2012, 12:41 AM   #8
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Re: Severe GI issues And other things, Please help me

You might want to consider the possibility that you have Lyme disease.

I wish you the best.

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Old 10-30-2012, 08:10 PM   #9
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Re: Severe GI issues And other things, Please help me

I had my endoscopy done a few weeks ago with little change, my throat,stomach, and small Intestine are inflamed with mainly my throat and small intestine being moderately inflamed. Doctor prescribed aciphex which I am currently taking, however I've noticed nothing. At the time of the endoscopy (oct. 10), i was hovering around 188lbs., down from 193-195 since my back injury in may. Unfortunately my weight has continued to decline gradually and is now at 182.8, and this was just before bed when i weighed myself today. Ive had very little appetite and been nauseous and very depressed and anxious, as you would expect. Who wouldn't be? On top of that I have an infection just below my tailbone that's been inflamed and bleeding for the past week and a half. Lol.I really need to workout again and eat lots to get my weight up, but my back is constantly sore/stiff and I'm too nauseous to eat enough. Very vicious cycle, wouldn't wish it on anyone.

 
Old 10-30-2012, 08:16 PM   #10
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Re: Severe GI issues And other things, Please help me

As for Lyme disease being a possibility, it's possible, but I've never had a bullseye rash, which is the presenting symptom, and I haven't been in contact with ticks in a long time. Thanks for the suggestion though, and on second thought, I had a blood test for sedimentation rate (for inflammation) normal being 0-10, my value was 9. Which I guess doesn't say anything but it's on the high end, and this was a while ago.

 
Old 11-07-2012, 06:20 PM   #11
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Re: Severe GI issues And other things, Please help me

Just an update, I made an appointment for this Friday in hopes of getting some tests done. I'm at the end of my rope here. I'm thinking it might be Lyme, but God knows what it could be, I just hope I get the ball rolling. It's going to be difficult but hopefully he understands.

 
Old 11-07-2012, 09:22 PM   #12
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Re: Severe GI issues And other things, Please help me

Wow man, Ive never seen or heard of symptoms like yours, I'm terribly sorry. Reading your story even put me in pain, and i envy your will to find answers and figure out what is wrong. I too have been experiencing wierd new symptoms with my body in relation to a caffeine overdose which has caused my first ever GERD flare up. I have done a little bit of research on some of my symptoms and stumbled across lyme disease a time or two, you really might want to check into that, as it seems you do display some of those symptoms. i wish you the best of luck, and please be sure to post updates for us to follow your condition and hopeful recovery.

 
Old 11-07-2012, 10:42 PM   #13
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Re: Severe GI issues And other things, Please help me

So sorry about your situation. I'm reading between the lines and wondering if there is something else could be the root of your anxiety and GI symptoms. Sometimes our bodies convert our psychological frustrations into physical symptoms such as your nausea and vomiting. This could be symbolic of your feeling (disgust etc) that you aren't able to express. Maybe I'm out of line here, just wondering if you might have the personality type of one that tends to keep things inside? You also might try some calming music, relaxation, massage. Personally, I would try all of the natural techniques and remedies before anything invasive or strong medications. You are so young to start having chronic health issues. Didn't get that last part about your dog...it must have been a bad bite. What kind of dog? Love dogs, but. Good luck.

 
Old 11-07-2012, 11:25 PM   #14
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Re: Severe GI issues And other things, Please help me

Thanks guys, I hope I can get this stuff figured out really soon. I'll let you guys know what happens Friday. Btw it was lab/mutt. It was a bad bite, severed a nerve that's regenerated 80% in 3 years, parts of my wrist/hand can't feel, grip is weaker than left, hand not as flexible.

 
Old 11-09-2012, 01:44 PM   #15
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Re: Severe GI issues And other things, Please help me

Alright guys, appointment went well. I got blood drawn and urinanaylisis for Lyme,inflammatory markers, CBC, thyroid, and some other stuff. He said my nasal paths were swollen and inflamed and the throat was as well. Weird because I feel fine up there. But I guess it's good he found it. Maybe these tests will finally reveal something. God willing.

 
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