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Thread: Feel like I'm slowly dying...

  1. #1
    Senior Member SurfCat's Avatar
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    May 2002
    San Clemente, CA
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    Exclamation Feel like I'm slowly dying...

    Dear friends, I'm not one to generally be overdramatic (at least when it comes to my health as I've endured 13 years of horrible chronic pain and 8 years of intestinal problems) but I am standing on the precipice and wanting to jump due to the severity of my current health crisis.

    I may C 5/6 mostly complete injury trying to support a loving wife and my perfect two-year-old son (born 7/7/07 7lb. 7 oz!) but I don't know how much longer I can make it. For the past 4 to 5 months I've been experiencing a fire burning in my abdomen that feels like I'm being eaten from the inside out. It is the most agonizing pain I have ever felt in my life and it's always worse upon waking (especially early in the morning).

    I have mostly ruled out bladder infections (even though my white blood cell count is high there is no culture growing on UA) and believe it has something to do with my stomach/digestive system. For at least 5+ years I've been on mainly a gluten/ dairy-free diet but now I can't even eat anything except for bland rice and meat/fish.

    This is my hypothesis but if anyone out there has anything to add/subtract that is why I'm forcing myself to write this despite feeling horrible: I've been given so many narcotics and antibiotics since my injury in 1997 that I don't think my stomach has any good bacteria left to aid digestion. I started myself on the best probiotic I could find (Custom Probotics... Anyone know better?) and am taking digestive enzymes.

    Sorry this is so long but if anyone but here are the rest of my symptoms:
    always cold (even though I've lived in sunny southern CA), major brain fog and severe depression, almost always nauseated (unable to get enough calories down), and of course nerve pain that is beyond what used to be my 10 scale.

    Thank you so much for your help if you are able... this is an incredible community of survivors and I hope to be one of them.

    Patrick (Surfcat)
    "He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will RUN and not grow weary, they will WALK and not be faint."
    Isaiah 40:29-31

  2. #2
    Senior Member
    Join Date
    Aug 2004
    So. California
    Patrick, I'm sure others will have some advice. All I can offer are my prayers. I'm so sorry that you, my son, and so many others on this site have to go thru this. It's so unfair!

  3. #3
    I really don't think your symptoms are due to lack of good bacteria. Have you seen a gastroenterologist? You definitely need further testing.

  4. #4
    I am so sorry. Definitely see a gastroenterologist - I wonder if you could have an ulcer, as one possibility.

    I do not want to encourage you to self-treat instead of see a doctor, but if it isn't contraindicated, I wonder about drugs that treat excess stomach acid such as zantac, priloc, sucrulfate, etc.

  5. #5
    Congratulations on your perfect child. Mine is going to be 15 in a couple days! (time flies) I'm sorry to hear of your troubles. I have an idea..
    I recently went back on Baclofen after having weaned myself off of it and doing without it for about a year. I found this time that I seemed to have increased nerve pain and more stomach problems after taking Baclofen again. I searched these forums and found a lot of reports of people having decreased pain when decreasing Baclofen use.
    Just an idea of something to check into. I know halting Baclofen can be very serious if done too abruptly, so if you do try it, make sure you do it safely.
    Best of luck.

    ---C5-incomplete "walking quad", Dec.28,2005---

  6. #6
    Senior Member rdf's Avatar
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    Jul 2001
    Someplace between Nowhere and Goodbye
    You might get an x-ray to see if you're impacted. Symptoms kind of fit.
    Please donate a dollar a day at
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  7. #7

    I'm really glad you are sharing your experience and tried not to suffer it out alone.
    I agree it sounds like you should start with a gastroenterologist(digestive doctor)
    who most likely would recommend an endoscopy to look down your upper digestive tract.
    If this is not possible at this time, you can buy prevacid over the counter now and see if this helps. Try to start a journal mapping out what you eat, when symptoms start,etc because alot of digestive issues require detective work and putting symptom puzzle pieces together. The more information you can provide will help.

    Also,do you have someone to talk to regularly about your stressful health problems?
    You mention being depressed and I would encourage you to make sure you are
    doing talk therapy as well as taking other treatments.

    Please keep us posted and discuss any other issues that you need to.


  8. #8
    My guts cramp too whenever my testicle area hurt. there are a lot of nerves from the sacral that starts from the top of the butt crack, anus, etc and I am beginning to get my guts calmed down finally after a few months of getting these well. The skin can get terribly thin in these areas. I think some how the sacral nerves that are irritated triggers the guts. I can have a sore any where else on my body and it's like nothing compared to the nerves from the sacral getting hurt. really affects my stomach
    Last edited by J/L; 12-01-2009 at 11:08 PM.

  9. #9
    It kinda sounds like IBS pain to me, I have the same type of pain and have had it the last 25 years, best solutions I have found is drinking herbal tea, keeping my stress down, soaking in my hot tub as much as I can, standing an hour everyday, drinking one glass a Metamucil every mourning and using my FES bike and getting as much other exercise as I can. Also staying away from Soda and Coffee has helped out too.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  10. #10
    What meds are you on? Have you had an endoscopy? Have you had a check for fecal occult blood? Is your bowel program the same as usual? How is your stress level?

    Stomach issues are a challenge, as is neuro-pain.

    Hang in there. That 2 year old needs you.

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