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Discussion Starter · #1 ·
Hey Ive enjoyed reading your thoughtful info. I have seen innumerable "experts" who offer significantly less. I have been scared to discuss my illness(es) other than to docs but since I am hitting the end of the line I figure its time to open the discussion.Please see my next post with the pitiful story. Much appreciation in advance for continued insight. All the best to all the sufferers.
 

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My story:Hello Dr...........I have a complex story below that I hope you can kindly review for our appointment on Dec. 15. I apologize for the graphic explanations but I want to be as clear as possible. I’m not exaggerating the symptoms.I have extreme lower left digestive pain virtually 24 hours a day, save 2-5 hours of intermittent unrestful sleep. This has been going on for 2 ½ years with no relief at all despite extensive testing and trials. Most medicines make me sicker and dozens have provided no relief. The testing was almost all done under bowel prep, which generally leaves me asymptomatic other than nausea.The pain amounts to extreme cramps and nausea due to trapped, very compressed gas and mucus. Fibrous material generally passes within a 24 hour period via many small painful incomplete trips to the bathroom with mostly loose substance. One big trip after a few hours of sleep generally removes 80%. But the odorless gas and mucusy fluid based in one LLQ spot next to my iliac crest continuously recirculates, expands, moves, indigests, makes tons of noise, etc. leading to an ever increasing cycle of pain and complete permanent disability. There is usually essentially a huge bubble in me that all food has to painfully maneuver around while the gas continues to propagate. Eating is only due to forcing myself to eat small amounts of nutritious food. Almost never due to a healthy appetite. I literally painfully pas gas through both ends about 200 times every day without any means to stop it. It feels like a bike pump is connected to my colon constantly refilling the cavity. The cramps are so terrible that I have to lie down much of the day to pass them since it hurts worse and causes a horrific seizing cramp more often if I’m standing or sitting. I was on TPN at home for 5 months ending about a year ago. This brought me back to my normal weight of about 145 from 115, but now I am back down to 115. It seems like I lose 3 pounds a month consistently no matter how hard I try to eat.Once every few days I have fasted enough and purged my bowels enough to feel substantive relief. But approximately 6 hours after eating will be extremely bloated and in pain yet again as the cycle repeats. Even in a state of fasting I have significant nausea, acidity and some bloating, but that’s the best I can get.I cant tell for sure any foods that I don’t react to other than perhaps rice and avocado. I know of many that do affect me very badly. I have been a strict vegetarian for almost 25 years other than a little bit of cheese.Currently I eat mostly rice, avocado, cheese, tortilla chips, tofu, nuts, soy milk, cereal, potatoes, carrots, fruit, juices, tea. Loads of water to try to soothe digestive tract. I have tried to eat very small amounts of meat on occasion but have no appetite or desire for it. I’ve mostly been eating a wheat free diet or the last 6 months even though I cant tell if it helps.The onset of my digestive symptoms 2 ½ years ago and the site of the pain overlaps significantly with my second L5-S1 back injury (with adjacent nerve root damage and left sciatica.) My first back injury to that spot was in 1995, and related unsuccessful surgery with only partial relief after several years of physical therapy.Since early November I have had bad knee pain in both knees and have suddenly been diagnosed with Chondromalacia Patellae and/or degenerative arthritis. Another unexpected curse. (this happens to overlap with my last antibiotic treatment which I hope is just coincidental) I can hardly walk right now. I think that my back injury and poor nutrition have weakened my leg muscles despite the long daily walks I was doing. I’m guessing my weak leg muscles have facilitated destroying my knee cartilage.I have been diagnosed with a variety of things that the various local doctors and Mayo Clinic didn’t seem so confident in, including bacterial overgrowth, rapid gastric emptying, severe irritable bowel syndrome, “many yeast”, inability to absorb gluten, borderline lactose intolerance (which I think is much more than borderline) not to mention lower level things like hiatal hernia and GERD. I have tried practically all the possible treatments for these items. To me all of these things could be caused by a small piece of nerve or tissue damage in my colon causing dead peristalsis and therefore massive spasms, and facilitating the growth of heinous bacteria that acts and feels like poison traveling throughout my body.Of course some doctors have suggested that my brain is influencing my pain which is understandable but incorrect. I have seen three psychiatrists who all do not think a brain disorder is at work here. And I am quite sure. The well respected Dr. Norman Rosenthal who I have seen a few times recently says in writing, "surprisingly good mental health given the extreme pain" "abdominal pain is organic rather than of psychological origin" "relief, if at all, will come from physical intervention"Frankly, the local doctors don’t believe they can help me and therefore have generally not been interested in following up.The social aspects are the least of my problems but are still significant. I can’t go in public other than for very brief unpleasant trips where I have to pretend to not feel sick in meetings etc. I can’t eat with people since I am too sick to eat usually and don’t want to ingest most of the foods. And now I cant even walk so have less motivation.As you see I am in a serious state of pain and deterioration without a realistic plan for improvement, and I am extremely grateful for any help you can offer.
 

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Do you have IBS-C ?
Rice is constipating.So you had breath test?Well i feel like you.I need diarrhea to evacuate more stuff as possible.I still search how to do it.I'm thinking of few glasses of Miralax.Of course i'm a suppository fans.
 

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You are C.Incomplete evacuater.
 

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Discussion Starter · #7 ·
heyI have tied eating little bits but Im a real vegetarianSo as a kid I hardly ate anynd since neverand im sickand when i try to eat it i usually gagI can handle a bite of burnt bacon or fish but thats about itI have no idea wtf to do
 

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Have you ever been to an herbalist? I have had a similer problem--although admitedly less severe--for the past several months. Mine is not really localized anywhere exept the lower abdomen but it is with me 24-7, with some improvement in the late afternoon. I went to an herbalist who specialized in I.B.S. treatment. It has so far worked very well, the pain is now virtualy gone i the afternoon and is only very slight most mornings with the constant nausea I was suffering pretty much eliminated. I did this a few weeks ago, you do have to be patient, but it is working faster and better than I expected. The herbalist, and I know I can not speak for all of them, was much more concerned with my pain than any damn doctor ever was, she perscribed an herbal tonic just for me, which is what one needs for this type of thing instead of the cover-all pain killers that in my experiance made things worse. (The tonic tastes nasty but it's worth it).Hope this helps a bit,good luck.
 

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I went to Napiers, which is a clinic famous for teating things that doctors don't consider "serrious" (but make us feel like we're dying). They have locations in some of the major cities of the U.K., London, Edinburgh and, I think, Cambridge and Manchester. If you're not in the U.K. you should ask around, that's how I found Napiers. (People go to hebalists for anything so you need not worry about being embarressed). Health food store clientelle would probably have a good idea where to find one, and could offer feedback as well concerning the herbalists' abilities. The one I went to was great, she was compassionate and got me to give every detail about my problem, something the doctors never really seem to care about... I shouldn't slag off doctors too much, I know an herbalist can't do much for a collapsed lung or cancer, it's just these "minor" problems they suck at treating.Good Luck
 
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Hiya! One suggestion may be to take out soy. I know my IBS-D is instigated by soy milk and I have read both positives and negative regarding soy in general. I don't like dairy so I have tried almond milk which I like but you may just try taking out all soy (this includes tofu)for 1 month and see if you notice any difference. Just a thought...good luck!
 
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