Discussions By Condition: I cannot get a diagnosis.

I feel like I'm dying and no one knows why - GI problems

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: ramtuff
  • April 23, 2008
  • 05:51 AM

I desperately need help in diagnosing a GI disorder. This has been an ongoing problem since 2005, and no one's been able to tell me what's wrong. Here's the basic gist:

Symptoms:

Week long periods w/no bowel movements
Week long periods w/multiple bowel movements per day
All bowel movements are soft/runny
Hard to "clean" myself after a bowel movement...requires and excessive amount of wiping
Uncontrollable discharge/leaking of fecal matter after a bowel movement that requires follow-up wipes throughout the day (about every 20-30 minutes)
Occasional blood in stool
Excessive gas
A feeling of being bloated
Excessive dripping after urination
General pain throughout my stomach and intestinal regions that comes and goes and varies in intensity

In 2006, I went to the hospital with appendicitis like pain, and an inflammation was found in the cavity where the large and small intestines meet. I was treated for the inflammation, but no one could tell me the cause of it.

So far, I've had MRI's, upper and lower bowel x-rays, a small bowel study (barium swallow), abdominal and pelvic ultrasounds, and a colonoscopy. None of these tests found anything out of the ordinary.

With the symptoms I have, and since it's been impossible to diagnose up to now, I'm really scared that this could be something really serious (as in life threatening). I certainly feel like I'm dying, and to be totally honest, if whatever I have is killing me, I wish it would hurry up and get it over with. Living like this for the past three years has been absolute ***l, and it's really affecting my life, personally and professionally. Any help or ideas that you have would be very appreciated.

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13 Replies:

  • Have they checked for celiac disease? Parasites?I'm sorry you are having these uncomfortable symptoms and no answers yet.Best Wishes
    Anonymous 42789 Replies Flag this Response
  • In 2006, I went to the hospital with appendicitis like pain, and an inflammation was found in the cavity where the large and small intestines meet. I was treated for the inflammation, but no one could tell me the cause of it. You definitly have colitis or crohns and you should have been put on a follow up after 2006. The spot that you refer to is the most common site in the intestines for crohns disease. You should try posting at www.healingwell.com , since they have a great board for both crohns and ulcerative colitis. You should also see a speciallist and ask for a new colonscopy as well as feces tests. A white blood cell count and CRP are common blood tests to run as well. Both of these diseases are uncurable, but they are able to keep them under control and they will NOT kill you. They do make you feel like you are living dead person, but that will change on meds and diet control. I know because I have Crohns myself. Wishing you the best of luck. Kiera
    Anonymous 42789 Replies Flag this Response
  • I saw a show on discovery health and this lady had problems with her bowels and she was home bound and got to the point she was wearing depends. I don't know if you are that bad but she could not leave her toilet.She was desperate and there was a doctor she found close to her, I think in New Jersey or New York who specialized in problems with bile production. Everytime she ate her gall bladder went into overdrive which caused her crap her pants after dinner going on a walk with her new boyfriend!Look on Discovery Health. Good Luck.
    Anonymous 42789 Replies Flag this Response
  • There are many pathogenic organisms that cause what you are dealing with. The problem is that many of the doctors are still years behind in their thinking and refuse to go out on a limb. Many of the intestinal diseases such as Crohn's, Celiac etc. are caused by pathogenic organisms (remember that H. Pylori a bacteria causes ulcerations of the stomach, so why couldn't other pathogens cause problems elsewhere in the GI tract?) Parasites of all classes (nematodes/flukes/protozoa) will cause major GI problems as many of them find their dwelling their. Parasite testing is known to be unreliable (with a 5-10% accuracy). There is now recognition that many bugs can be pathogenic such as microsporidia, b. hominis and d. fragilis. There Any bleeding is a good sign that there is an ulceration, or perforation of the intestinal wall caused by a pathogenic organism. The trick is how to find the organism that is causing all of this. Some resources::\ http://www.parasitetesting.com/ badbugs.org (b. hominis and d. fragilis) Read Jordan Rubin's book about his recovery from GI problems Read about the SCD diet (a diet meant to "starve" pathogenic organisms thus alleviating many problems) Google Dr. Leo Galland, MD he has many wonderful online articles about parasites and leaky gut syndrome. (of course I am not sure if you could call them "wonderful" when they are about parasites! :>)
    LINENUP 122 Replies Flag this Response
  • Also you are welcome to come over to curezone ,parasite support forum where I am active. We have some very good resources and posters. Give me a shout if you go there.
    LINENUP 122 Replies Flag this Response
  • I want to thank everyone for your replies. I really appreciate it. It's been a very frustrating three years living with this, and your ideas and thoughts are very welcome. Right now, I think Blaze might be on the right track here. I live in PA where Lyme disease is a large concern, and I spend most of the summer months outdoors. Looking at the symptoms on CanLyme.com, I'm just in awe. There's a lot of other symptoms that I have that I never really gave much though too (facial twitches/tics, increased floaters and phantom images in the corners of my eyes, plugged up ears, joint and muscle pain, sleeping problems, light headedness, etc). Those symptoms along with the GI issues really seem to fit Lyme disease. Out of the list of 70 or so symptoms on that website, I have 30 of them. I'm shocked, because I never knew Lyme disease could cause all these different symptoms. I always though it was kind of like Mono. I think that if what I have is actually a GI disease, all my tests would have shown something. I've been run through the gamut of tests, and they've all come back clear. I have an appointment with my GI doc on 5/1, so I'll be taking the list of symptoms with me and see what he has to say about it. I'm not sure if he'll even want to consider it as a possibility though, because it's not his field. I guess I should schedule an appointment with my family doc in the meantime and get a blood test too.
    ramtuff 4 Replies Flag this Response
  • Many pathogens will give very similar symptoms for instance you can go to the CDC site on Parasites and you will notice that bugs like mycobacterium , protozoans etc. can all cause this symptomology. So keep that in mind, as if you cannot get a postive on Lyme's you have something to fall back on. All the pathogenic bugs evoke very strong immune responses. So much of the symptomologies fall together -as most of it is due to the body's response to the pathogen and not the pathogen itself. I would also note that my friend spent 20 years with GI people, and they were not able to detect a pathogen that was causing his ulcerative colitis. It is a frustrating experience, and my thoughts are with you.
    LINENUP 122 Replies Flag this Response
  • What about endemetriosis? If you have it, it could be causing your symptoms. One of those no-period pills could really help that condition if you can tolerate the pill.Endometriosis can cause alot of weird symptoms because it is a flare-up of tissues that are supposed to be in your uterus that are located in other spots in one's body.It would not be unheard of for someone to have endometriosis-tissues that are located in the bowels, that swell & bleed and respond to hormones according to your menstural cycle.
    Anonymous 42789 Replies Flag this Response
  • Many pathogens will give very similar symptoms for instance you can go to the CDC site on Parasites and you will notice that bugs like mycobacterium , protozoans etc. can all cause this symptomology. So keep that in mind, as if you cannot get a postive on Lyme's you have something to fall back on. All the pathogenic bugs evoke very strong immune responses. So much of the symptomologies fall together -as most of it is due to the body's response to the pathogen and not the pathogen itself. I would also note that my friend spent 20 years with GI people, and they were not able to detect a pathogen that was causing his ulcerative colitis. It is a frustrating experience, and my thoughts are with you.Well, I certainly won't be counting anything out at this point. I'm leaning towards the lyme disease though, because of my high exposure to ticks. I find several ticks on me each summer, and it's very probably that I could have missed one at some point. I will definitely be doing some research into your suggestion as well. What about endemetriosis? If you have it, it could be causing your symptoms. One of those no-period pills could really help that condition if you can tolerate the pill.Endometriosis can cause alot of weird symptoms because it is a flare-up of tissues that are supposed to be in your uterus that are located in other spots in one's body.It would not be unheard of for someone to have endometriosis-tissues that are located in the bowels, that swell & bleed and respond to hormones according to your menstural cycle.Thanks for the suggestion, but I probably should have mentioned before that I am uterine free. ;)
    ramtuff 4 Replies Flag this Response
  • Sounds like a plan. Keep us posted.
    LINENUP 122 Replies Flag this Response
  • Well, I had an Upper Endoscopy done yesterday, and nothing out of the ordinary was found. I've been pretty busy lately, so I haven't had time to schedule an appointment with my general practitioner to get tested for Lyme yet.
    ramtuff 4 Replies Flag this Response
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  • Well, I had an Upper Endoscopy done yesterday, and nothing out of the ordinary was found. I've been pretty busy lately, so I haven't had time to schedule an appointment with my general practitioner to get tested for Lyme yet. Have you had a full stool exam done over a three day period? Recently? Have you been specifically tested for clostridium difficile infection? This is often not tested by docs and can cause a severe form of pseudomembranous colitis. Please make the time for these tests. I know it is hard when you are busy, but putting it off is not going to make things better. Also, please get a good quality PROBIOTIC with several strains of beneficial flora. Jarrow makes some good ones, and futurebiotics and NSI. If you have gas and bloating after eating then I recommend a good digestive pancreatic enzyme supplement to take before each meal. www.vitacost.com has the best prices for supplements on the web. Not a rep ( but should be with the amount of money I spend on their site!:p)Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Believe me, I wouldn't put it off if I could help it, but I travel out of state a lot for work.
    ramtuff 4 Replies Flag this Response
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