Discussions By Condition: I cannot get a diagnosis.

Too Many Conditions...From An Autoimmune Source? PART 1

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Kateri
  • October 24, 2010
  • 06:22 PM

Hi All,

So, I'm guessing this is a long shot, but I'm sick of being sick and frustrated that it seems that my doctors are treating symptoms of a larger problem and not finding the actual cause. I live with a paramedic and he thinks I might have some sort of autoimmune disease, so if this sounds like you or anyone you know, please write me back with a type of doctor I can go to or a test I could take. Thank you!

I'm 25 yrs old, 5 ft 1, 105 pounds.
Ok, when I was born I was 7 mths, my mom had toxemia, I was 3 pounds. I was ok, but I know they gave me all sorts of drugs to make me develop faster. I actually still have the scars in my heels today from all the needles.

When I was 3 I had my first stomach issue- apparently I couldn't/wouldn't go to bathroom. For whatever reason, I would not do number 2 for days and then it would hurt. I remember my parents taking me to a pediatric gastro, he said there was nothing physically wrong, and by the time I was 5 this resolved on it's own.

Everything was pretty normal till I was 12, I remember I started getting episodes of what my primary care doctor called "Spastic Colon." All of a sudden I would get sharp, piercing pains in my lower left side, my stomach would get incredibly boated, and literally nothing, nothing would help except for chamomile tea and eventually in a few hours this would pass as very bad diarrhea. This would happen once every 2/4 months or so, and increased to once a month by the time I was 16..more on that later.

Around this time I started getting severe eczema all over and psoriasis of the scalp, my scalp would get so oily but also so dry..it was very weird..I had prescription shampoos and all that. The eczema bleached out my skin in places..spots on my legs and arms would get pure white from my normal olivish Italian skin. Steroid cream somewhat resolved this, it got much, much worse in winter. Still, during the summer my skin is dry, during the winter ezcema is everywhere.

As I was becoming a teenager eczema attacked my face, all year round. So did severe, bacterial-based acne. It was a pretty sad game, trying to treat the acne and the eczema at the same time - the eczema cream would make the acne worse, the acne meds would irritate the eczema. Only antibotics could control the acne, bactrium if I remember. Eventually, the skin on my nose wore so thin it would bleed and my eyelids also would be raw. My skin's collagen had a total breakdown and my face honestly looked like an angry, raw red mess. The worst part was showers, where it would make my face feel like it was on fire and I would have to coat it with Eucerin cream for 40 minutes after I got out.
Luckily for me, this was the 90's and lasers were coming out. This one amazing, forward thinking dermatologist I found ( others had no idea what to do for me) decided to do a series of gentle lasers for free while placing me on a round of that lovely drug Accutane. All in all here, I don't think accutane hurt me, but more on that later. Anyway, 30 laser treatments later, the eczema was pretty much gone from my face, and my skin no longer felt any issues while taking a shower. It didn't look good, but with makeup on you wouldn't really know I ever had an issue. The Accutane pretty much resolved the major acne, and also my severe depression about this whole thing, as I was a young girl in highschool and I often missed school because I felt I was "too ugly" too go that day.

Anyway...as my skin got better I started having severe stomach issues..the Spastic colon thing got out of control, and I was diagnosed with IBS, irritable bowel syndrome. I noticed that any sort of high-fiber/ruffage type foods made it worse - lettuce, oatmeal, etc. Then, literally 5 days after my 16th birthday, I just stopped being able to go to the bathroom. Just no more. Five days went by and I took a ton of laxatives, Senekot, and I finally went, and it was very painful. This pattern repeated and I told my parents..it never stopped repeating. When I tell you I was miserable every second of my life back then, it's true. My stomach would constantly be cramping, eating felt terrible, and I could never go to the bathroom without a laxative, and often only citric of magnesium worked, and it was SOO PAINFUL when it did..doctors put me on stool softeners and metamucil, which only made me feel worse..this went on for two more years, until the drug Zelnorm came out. This helped a pretty good deal. While I was on this drug I only needed to take stool softeners and sometimes strong laxatives, but I could function in life. This went on until I was in college.


PLEASE READ PART II

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7 Replies:

  • Anyway...as my skin got better I started having severe stomach issues..the Spastic colon thing got out of control, and I was diagnosed with IBS, irritable bowel syndrome. I noticed that any sort of high-fiber/ruffage type foods made it worse - lettuce, oatmeal, etc. Then, literally 5 days after my 16th birthday, I just stopped being able to go to the bathroom. Just no more. Five days went by and I took a ton of laxatives, Senekot, and I finally went, and it was very painful. This pattern repeated and I told my parents..it never stopped repeating. When I tell you I was miserable every second of my life back then, it's true. My stomach would constantly be cramping, eating felt terrible, and I could never go to the bathroom without a laxative, and often only citric of magnesium worked, and it was SOO PAINFUL when it did..doctors put me on stool softeners and metamucil, which only made me feel worse..this went on for two more years, until the drug Zelnorm came out. This helped a pretty good deal. While I was on this drug I only needed to take stool softeners and sometimes strong laxatives, but I could function in life. This went on until I was in college.Meanwhile, all during this time, if there was a cold, flu, sinus infection thing to be had, I got it. It was insane how much I was sick..on top of everything else..I really don't know how I'm sitting here today..I was so crazy depressed as you can imagine. It's actually sad to me to write this all out..but hopefully there is hope it will all be gone one day, right?Anyway, at this point I'm in college, a very stressful good school, and the stomach thing really was slowing me down. Between the spastic colon episodes, the constipation, and this general feeling of fatigue and just terribleness, I was having a hard time keeping up. Some of my classes were physically demanding and I just didn't have it in me. One day, when I was home from school, I went to go to the bathroom and had a very sharp pain..I realized something left my body that shouldn't have. It was my large intestine, and it came out..you know where. I started screaming, I thought I was dying, my Mom ran in, she saw it, she was screaming, etc. It hurt, there was blood, etc. It came out about 6 inches. We went to the hospital, where they literally pushed it back in, and told me it was rectal prolapse, and with my issues it was bound to happen and it will happen again. That was it.I had to be careful not to strain too hard going to the bathroom, and it would always slip out a little bit but the doc's hope was that it would eventually repair itself if the chronic constipation ever went away. If it slipped out a little bit I would just put it back in myself. Gross I know. They gave me a colonoscopy at this time and it was clean..they gave me the rubber band pill test too (more than once) and it passed eventually, I didn't have blockages or anything..the liquid barium test too..and a test for Chrohn's disease as well..all clean...so yeah, a clean slate but everything ever wrong!Annnnways, now it's the beginning of my senior year in college and I am just feeling worse and worse. A professor caught notice of me looking just so pale, sick, and horrible and asked me what was wrong. I also was throwing up at least once a week at this point because trying to eat with stomach cramps and chronic constipation just makes your stomach freak out and reject everything. At the end of my rope, I told the Professor I had this undiagnosed nasty stomach issue that no one could really resolve. He himself had had colon cancer and had this amazing doctor that helped him out. This was Dr. Milsom at Cornell Weill Medical Center in Manhattan...this man is amazing. I went to see him and told him my issues, and he immediately gave me a test called a Cinema-defogram. This is where they record the way the muscles work in your colon..on video..on a clear toilet with liquid barium..it's a rough test. This was the greatest thing ever to me though, as he saw serious dysfunction in the muscles that move waste along in the colon, and this had led to the rectal prolapse. He also saw tiny holes in the colon/that it was porous, and waste bacteria was definitely getting into my bloodstream and making me just plain sick. He said I had a toxic megacolon, but had no idea what caused the condition. He removed lathroscopically my sigmoid colon, and did some sort of repair job where he sewed the remaining colon to my tailbone for stability. He noticed a frontal prolapse against the vaginal wall too, but he couldn't deal with that at this time he said. He said it wasn't critical. The recovery in the hospital was terrible, as believe it or not the spastic colon went into full swing..I would try to eat and throw up, the cramping was unbelievably painful, nurses had no idea what to do. I had a epidural in my back to block the pain, but that really bothered my back so they had to take it out. They gave me dialaudid to no effect, until a smart nurse gave me something that I still use to this day when my spastic colon acts up - Benadryl. She gave me a shot of Benadryl and my colon just stopped being insane..I got some rest. A week later I was going to the bathroom on my own and was able to come home. While I still have spastic colon issues occasionally, I no longer EVER have chronic constipation. I was able to return to school and live my life. As the years have gone by my stomach has gotten better and better, until two years ago I was able to eat salad again with minimal discomfort. However, my stomach does still get spastic colon...this leads to nausea, diarrhea, fatigue, I'm done for the day. I still get sick ALL THE TIME with colds, flu, etc. Right now I have a retracted eardrum/sinus infection that I've been on antibiotics for 15 days now and it's barely getting better. I still have eczema all over, (not my face though :-) ) , and recently I had total facial laser resurfacing to great success that I think you would never know how bad my face once was. I have no energy ever. I get pains in my lower legs that throb sometimes so much I can't sleep at night..in desperation I found some diabetic leg cream that actually helps a lot..this concerns me as why does diabetic leg cream help me>!?!? It increases circulation which is why I got it. I notice the leg thing is mainly at night or the morning...my hands and feet are always cold and going numb, I cannot make a fist every morning when I wake up, my feet fall asleep super quick. I eat super healthy ..lean meats, Mediterranean diet and always have, and I know this helps. If I try to eat something sugary I just feel terrible so I naturally avoid it. Sometimes I get pains like gout (I know I don't have gout - I know what it is from my Dad lol) in my big toe and this just confuses me..I can barely walk on it..When I wake up in the morning I feel plain terrible, like I know it sounds ridiculous but I NEED a shower..like need it..or else I feel stiff, achy, generally just crappy. After a shower I feel oiled up and ready to go...lol..totally different from when I got in. Advil is a wonder drug for me, I try not to take too much of it but if I do take it I feel like I'm on a vacation..everything just calms down, nothing aches..it literally makes me feel good all over. Which brings me to the end of this..the last two actually serious problems I have..about 3 years ago I started getting non-stop bladder infections..just non-stop..and they hurt extremely bad..finally my normal doc sent me to a specialist, who confirmed the type of bacteria, Streptococcal type B, which is a naturally occurring bacteria in your body, but it's not suppose to be in your bladder. He also saw my bladder was inflamed and angry from the constant infections. He put me on low grade macrobid 50 milligrams every day, and after a couple of months, I had relief. I now only get serious antibiotic needing bladder infections about 5-10 times a year, and they resolve within a week.Hooowever, if I don't shower in the morning, I will feel a bladder infection starting. When I wake up in the morning, the first pee of the day allllways burns. I also noticed that when my stomach acts up my bladder starts burning, never fail. I don't go to the doc much as they never know what to do for me and I have an extremely busy life but on a hunch I went to a gastro and got tested for a condition called SIBO, which is something to do with bacteria out of whack in your GI track. I came up positive. I started taking Florastor probiotics with a fancy antibiotic called Xifaxan which helps regulate bacteria in your GI for longer than you take the antibiotic. This combo has made my stomach the best it's ever been, and helped my bladder while I was on it. I finished the one round about a year ago, I have yet to see if I should have another or not. Just two months ago I went to the dentist..normal visit..I have always taken care of my teeth and they are nice..lol..he sat me down and said for 25 yrs old, I have some pretty advanced gingivitis. I had to have $3,500 worth of dental work at the gumline fixing my teeth or he said I was going to lose them all within a year. I was shocked..He showed me the pics of the x-rays and there is decay on my jawbone. PLEASE READ PART III
    Kateri 6 Replies
    • October 24, 2010
    • 06:23 PM
    • 0
    Flag this Response
  • Anyway...as my skin got better I started having severe stomach issues..the Spastic colon thing got out of control, and I was diagnosed with IBS, irritable bowel syndrome. I noticed that any sort of high-fiber/ruffage type foods made it worse - lettuce, oatmeal, etc. Then, literally 5 days after my 16th birthday, I just stopped being able to go to the bathroom. Just no more. Five days went by and I took a ton of laxatives, Senekot, and I finally went, and it was very painful. This pattern repeated and I told my parents..it never stopped repeating. When I tell you I was miserable every second of my life back then, it's true. My stomach would constantly be cramping, eating felt terrible, and I could never go to the bathroom without a laxative, and often only citric of magnesium worked, and it was SOO PAINFUL when it did..doctors put me on stool softeners and metamucil, which only made me feel worse..this went on for two more years, until the drug Zelnorm came out. This helped a pretty good deal. While I was on this drug I only needed to take stool softeners and sometimes strong laxatives, but I could function in life. This went on until I was in college.Meanwhile, all during this time, if there was a cold, flu, sinus infection thing to be had, I got it. It was insane how much I was sick..on top of everything else..I really don't know how I'm sitting here today..I was so crazy depressed as you can imagine. It's actually sad to me to write this all out..but hopefully there is hope it will all be gone one day, right?Anyway, at this point I'm in college, a very stressful good school, and the stomach thing really was slowing me down. Between the spastic colon episodes, the constipation, and this general feeling of fatigue and just terribleness, I was having a hard time keeping up. Some of my classes were physically demanding and I just didn't have it in me. One day, when I was home from school, I went to go to the bathroom and had a very sharp pain..I realized something left my body that shouldn't have. It was my large intestine, and it came out..you know where. I started screaming, I thought I was dying, my Mom ran in, she saw it, she was screaming, etc. It hurt, there was blood, etc. It came out about 6 inches. We went to the hospital, where they literally pushed it back in, and told me it was rectal prolapse, and with my issues it was bound to happen and it will happen again. That was it.I had to be careful not to strain too hard going to the bathroom, and it would always slip out a little bit but the doc's hope was that it would eventually repair itself if the chronic constipation ever went away. If it slipped out a little bit I would just put it back in myself. Gross I know. They gave me a colonoscopy at this time and it was clean..they gave me the rubber band pill test too (more than once) and it passed eventually, I didn't have blockages or anything..the liquid barium test too..and a test for Chrohn's disease as well..all clean...so yeah, a clean slate but everything ever wrong!Annnnways, now it's the beginning of my senior year in college and I am just feeling worse and worse. A professor caught notice of me looking just so pale, sick, and horrible and asked me what was wrong. I also was throwing up at least once a week at this point because trying to eat with stomach cramps and chronic constipation just makes your stomach freak out and reject everything. At the end of my rope, I told the Professor I had this undiagnosed nasty stomach issue that no one could really resolve. He himself had had colon cancer and had this amazing doctor that helped him out. This was Dr. Milsom at Cornell Weill Medical Center in Manhattan...this man is amazing. I went to see him and told him my issues, and he immediately gave me a test called a Cinema-defogram. This is where they record the way the muscles work in your colon..on video..on a clear toilet with liquid barium..it's a rough test. This was the greatest thing ever to me though, as he saw serious dysfunction in the muscles that move waste along in the colon, and this had led to the rectal prolapse. He also saw tiny holes in the colon/that it was porous, and waste bacteria was definitely getting into my bloodstream and making me just plain sick. He said I had a toxic megacolon, but had no idea what caused the condition. He removed lathroscopically my sigmoid colon, and did some sort of repair job where he sewed the remaining colon to my tailbone for stability. He noticed a frontal prolapse against the vaginal wall too, but he couldn't deal with that at this time he said. He said it wasn't critical. The recovery in the hospital was terrible, as believe it or not the spastic colon went into full swing..I would try to eat and throw up, the cramping was unbelievably painful, nurses had no idea what to do. I had a epidural in my back to block the pain, but that really bothered my back so they had to take it out. They gave me dialaudid to no effect, until a smart nurse gave me something that I still use to this day when my spastic colon acts up - Benadryl. She gave me a shot of Benadryl and my colon just stopped being insane..I got some rest. A week later I was going to the bathroom on my own and was able to come home. While I still have spastic colon issues occasionally, I no longer EVER have chronic constipation. I was able to return to school and live my life. As the years have gone by my stomach has gotten better and better, until two years ago I was able to eat salad again with minimal discomfort. However, my stomach does still get spastic colon...this leads to nausea, diarrhea, fatigue, I'm done for the day. I still get sick ALL THE TIME with colds, flu, etc. Right now I have a retracted eardrum/sinus infection that I've been on antibiotics for 15 days now and it's barely getting better. I still have eczema all over, (not my face though :-) ) , and recently I had total facial laser resurfacing to great success that I think you would never know how bad my face once was. I have no energy ever. I get pains in my lower legs that throb sometimes so much I can't sleep at night..in desperation I found some diabetic leg cream that actually helps a lot..this concerns me as why does diabetic leg cream help me>!?!? It increases circulation which is why I got it. I notice the leg thing is mainly at night or the morning...my hands and feet are always cold and going numb, I cannot make a fist every morning when I wake up, my feet fall asleep super quick. I eat super healthy ..lean meats, Mediterranean diet and always have, and I know this helps. If I try to eat something sugary I just feel terrible so I naturally avoid it. Sometimes I get pains like gout (I know I don't have gout - I know what it is from my Dad lol) in my big toe and this just confuses me..I can barely walk on it..When I wake up in the morning I feel plain terrible, like I know it sounds ridiculous but I NEED a shower..like need it..or else I feel stiff, achy, generally just crappy. After a shower I feel oiled up and ready to go...lol..totally different from when I got in. Advil is a wonder drug for me, I try not to take too much of it but if I do take it I feel like I'm on a vacation..everything just calms down, nothing aches..it literally makes me feel good all over. Which brings me to the end of this..the last two actually serious problems I have..about 3 years ago I started getting non-stop bladder infections..just non-stop..and they hurt extremely bad..finally my normal doc sent me to a specialist, who confirmed the type of bacteria, Streptococcal type B, which is a naturally occurring bacteria in your body, but it's not suppose to be in your bladder. He also saw my bladder was inflamed and angry from the constant infections. He put me on low grade macrobid 50 milligrams every day, and after a couple of months, I had relief. I now only get serious antibiotic needing bladder infections about 5-10 times a year, and they resolve within a week.Hooowever, if I don't shower in the morning, I will feel a bladder infection starting. When I wake up in the morning, the first pee of the day allllways burns. I also noticed that when my stomach acts up my bladder starts burning, never fail. I don't go to the doc much as they never know what to do for me and I have an extremely busy life but on a hunch I went to a gastro and got tested for a condition called SIBO, which is something to do with bacteria out of whack in your GI track. I came up positive. I started taking Florastor probiotics with a fancy antibiotic called Xifaxan which helps regulate bacteria in your GI for longer than you take the antibiotic. This combo has made my stomach the best it's ever been, and helped my bladder while I was on it. I finished the one round about a year ago, I have yet to see if I should have another or not. Just two months ago I went to the dentist..normal visit..I have always taken care of my teeth and they are nice..lol..he sat me down and said for 25 yrs old, I have some pretty advanced gingivitis. I had to have $3,500 worth of dental work at the gumline fixing my teeth or he said I was going to lose them all within a year. I was shocked..He showed me the pics of the x-rays and there is decay on my jawbone. PLEASE READ PART III
    Kateri 6 Replies
    • October 24, 2010
    • 06:24 PM
    • 0
    Flag this Response
  • PART IIMeanwhile, all during this time, if there was a cold, flu, sinus infection thing to be had, I got it. It was insane how much I was sick..on top of everything else..I really don't know how I'm sitting here today..I was so crazy depressed as you can imagine. It's actually sad to me to write this all out..but hopefully there is hope it will all be gone one day, right?Anyway, at this point I'm in college, a very stressful good school, and the stomach thing really was slowing me down. Between the spastic colon episodes, the constipation, and this general feeling of fatigue and just terribleness, I was having a hard time keeping up. Some of my classes were physically demanding and I just didn't have it in me. One day, when I was home from school, I went to go to the bathroom and had a very sharp pain..I realized something left my body that shouldn't have. It was my large intestine, and it came out..you know where. I started screaming, I thought I was dying, my Mom ran in, she saw it, she was screaming, etc. It hurt, there was blood, etc. It came out about 6 inches. We went to the hospital, where they literally pushed it back in, and told me it was rectal prolapse, and with my issues it was bound to happen and it will happen again. That was it.I had to be careful not to strain too hard going to the bathroom, and it would always slip out a little bit but the doc's hope was that it would eventually repair itself if the chronic constipation ever went away. If it slipped out a little bit I would just put it back in myself. Gross I know. They gave me a colonoscopy at this time and it was clean..they gave me the rubber band pill test too (more than once) and it passed eventually, I didn't have blockages or anything..the liquid barium test too..and a test for Chrohn's disease as well..all clean...so yeah, a clean slate but everything ever wrong!Annnnways, now it's the beginning of my senior year in college and I am just feeling worse and worse. A professor caught notice of me looking just so pale, sick, and horrible and asked me what was wrong. I also was throwing up at least once a week at this point because trying to eat with stomach cramps and chronic constipation just makes your stomach freak out and reject everything. At the end of my rope, I told the Professor I had this undiagnosed nasty stomach issue that no one could really resolve. He himself had had colon cancer and had this amazing doctor that helped him out. This was Dr. Milsom at Cornell Weill Medical Center in Manhattan...this man is amazing. I went to see him and told him my issues, and he immediately gave me a test called a Cinema-defogram. This is where they record the way the muscles work in your colon..on video..on a clear toilet with liquid barium..it's a rough test. This was the greatest thing ever to me though, as he saw serious dysfunction in the muscles that move waste along in the colon, and this had led to the rectal prolapse. He also saw tiny holes in the colon/that it was porous, and waste bacteria was definitely getting into my bloodstream and making me just plain sick. He said I had a toxic megacolon, but had no idea what caused the condition. He removed lathroscopically my sigmoid colon, and did some sort of repair job where he sewed the remaining colon to my tailbone for stability. He noticed a frontal prolapse against the vaginal wall too, but he couldn't deal with that at this time he said. He said it wasn't critical. The recovery in the hospital was terrible, as believe it or not the spastic colon went into full swing..I would try to eat and throw up, the cramping was unbelievably painful, nurses had no idea what to do. I had a epidural in my back to block the pain, but that really bothered my back so they had to take it out. They gave me dialaudid to no effect, until a smart nurse gave me something that I still use to this day when my spastic colon acts up - Benadryl. She gave me a shot of Benadryl and my colon just stopped being insane..I got some rest. A week later I was going to the bathroom on my own and was able to come home. While I still have spastic colon issues occasionally, I no longer EVER have chronic constipation. I was able to return to school and live my life. As the years have gone by my stomach has gotten better and better, until two years ago I was able to eat salad again with minimal discomfort. However, my stomach does still get spastic colon...this leads to nausea, diarrhea, fatigue, I'm done for the day. I still get sick ALL THE TIME with colds, flu, etc. Right now I have a retracted eardrum/sinus infection that I've been on antibiotics for 15 days now and it's barely getting better. I still have eczema all over, (not my face though :-) ) , and recently I had total facial laser resurfacing to great success that I think you would never know how bad my face once was. I have no energy ever. I get pains in my lower legs that throb sometimes so much I can't sleep at night..in desperation I found some diabetic leg cream that actually helps a lot..this concerns me as why does diabetic leg cream help me>!?!? It increases circulation which is why I got it. I notice the leg thing is mainly at night or the morning...my hands and feet are always cold and going numb, I cannot make a fist every morning when I wake up, my feet fall asleep super quick. I eat super healthy ..lean meats, Mediterranean diet and always have, and I know this helps. If I try to eat something sugary I just feel terrible so I naturally avoid it. Sometimes I get pains like gout (I know I don't have gout - I know what it is from my Dad lol) in my big toe and this just confuses me..I can barely walk on it..When I wake up in the morning I feel plain terrible, like I know it sounds ridiculous but I NEED a shower..like need it..or else I feel stiff, achy, generally just crappy. After a shower I feel oiled up and ready to go...lol..totally different from when I got in. Advil is a wonder drug for me, I try not to take too much of it but if I do take it I feel like I'm on a vacation..everything just calms down, nothing aches..it literally makes me feel good all over. Which brings me to the end of this..the last two actually serious problems I have..about 3 years ago I started getting non-stop bladder infections..just non-stop..and they hurt extremely bad..finally my normal doc sent me to a specialist, who confirmed the type of bacteria, Streptococcal type B, which is a naturally occurring bacteria in your body, but it's not suppose to be in your bladder. He also saw my bladder was inflamed and angry from the constant infections. He put me on low grade macrobid 50 milligrams every day, and after a couple of months, I had relief. I now only get serious antibiotic needing bladder infections about 5-10 times a year, and they resolve within a week.Hooowever, if I don't shower in the morning, I will feel a bladder infection starting. When I wake up in the morning, the first pee of the day allllways burns. I also noticed that when my stomach acts up my bladder starts burning, never fail. I don't go to the doc much as they never know what to do for me and I have an extremely busy life but on a hunch I went to a gastro and got tested for a condition called SIBO, which is something to do with bacteria out of whack in your GI track. I came up positive. I started taking Florastor probiotics with a fancy antibiotic called Xifaxan which helps regulate bacteria in your GI for longer than you take the antibiotic. This combo has made my stomach the best it's ever been, and helped my bladder while I was on it. I finished the one round about a year ago, I have yet to see if I should have another or not. Just two months ago I went to the dentist..normal visit..I have always taken care of my teeth and they are nice..lol..he sat me down and said for 25 yrs old, I have some pretty advanced gingivitis. I had to have $3,500 worth of dental work at the gumline fixing my teeth or he said I was going to lose them all within a year. I was shocked..He showed me the pics of the x-rays and there is decay on my jawbone. Thank you for reading this. As you can imagine, this is a LOT of SH*T to deal with. I am sick of going to 50 doctors..I feel like a crazy person when I tell them the littlest things wrong with me (like the legs or fatigue) ..but honestly, all those little things add up and with the nasty conditions I'm dealing with it sometimes gets unbearable. I don't even know what the normal aches and pains of life are because I think I've categorized too much as "normal" this whole time..just because it's normal for me, I don't think other people deal with this stuff all the time..so I'm trying to list everything in hopes it helps someone figure this out for me. I've been through so much and I'm only 25, I'm concerned what my life will be like/what more will go wrong when I'm say, 50. I am still undiagnosed as to a name to a condition/conditions I have, and just want to know (as I suspect) if all this is related. If so, maybe I can do more for this? Aside from the macrobid 50 mg, I take no medications. If you think you know what is wrong with me, or know what type of doc could help me, please let me know. Thank you for your time.
    Kateri 6 Replies
    • October 24, 2010
    • 06:25 PM
    • 0
    Flag this Response
  • PART II Anyway...as my skin got better I started having severe stomach issues..the Spastic colon thing got out of control, and I was diagnosed with IBS, irritable bowel syndrome. I noticed that any sort of high-fiber/ruffage type foods made it worse - lettuce, oatmeal, etc. Then, literally 5 days after my 16th birthday, I just stopped being able to go to the bathroom. Just no more. Five days went by and I took a ton of laxatives, Senekot, and I finally went, and it was very painful. This pattern repeated and I told my parents..it never stopped repeating. When I tell you I was miserable every second of my life back then, it's true. My stomach would constantly be cramping, eating felt terrible, and I could never go to the bathroom without a laxative, and often only citric of magnesium worked, and it was SOO PAINFUL when it did..doctors put me on stool softeners and metamucil, which only made me feel worse..this went on for two more years, until the drug Zelnorm came out. This helped a pretty good deal. While I was on this drug I only needed to take stool softeners and sometimes strong laxatives, but I could function in life. This went on until I was in college.Meanwhile, all during this time, if there was a cold, flu, sinus infection thing to be had, I got it. It was insane how much I was sick..on top of everything else..I really don't know how I'm sitting here today..I was so crazy depressed as you can imagine. It's actually sad to me to write this all out..but hopefully there is hope it will all be gone one day, right?Anyway, at this point I'm in college, a very stressful good school, and the stomach thing really was slowing me down. Between the spastic colon episodes, the constipation, and this general feeling of fatigue and just terribleness, I was having a hard time keeping up. Some of my classes were physically demanding and I just didn't have it in me. One day, when I was home from school, I went to go to the bathroom and had a very sharp pain..I realized something left my body that shouldn't have. It was my large intestine, and it came out..you know where. I started screaming, I thought I was dying, my Mom ran in, she saw it, she was screaming, etc. It hurt, there was blood, etc. It came out about 6 inches. We went to the hospital, where they literally pushed it back in, and told me it was rectal prolapse, and with my issues it was bound to happen and it will happen again. That was it.I had to be careful not to strain too hard going to the bathroom, and it would always slip out a little bit but the doc's hope was that it would eventually repair itself if the chronic constipation ever went away. If it slipped out a little bit I would just put it back in myself. Gross I know. They gave me a colonoscopy at this time and it was clean..they gave me the rubber band pill test too (more than once) and it passed eventually, I didn't have blockages or anything..the liquid barium test too..and a test for Chrohn's disease as well..all clean...so yeah, a clean slate but everything ever wrong!Annnnways, now it's the beginning of my senior year in college and I am just feeling worse and worse. A professor caught notice of me looking just so pale, sick, and horrible and asked me what was wrong. I also was throwing up at least once a week at this point because trying to eat with stomach cramps and chronic constipation just makes your stomach freak out and reject everything. At the end of my rope, I told the Professor I had this undiagnosed nasty stomach issue that no one could really resolve. He himself had had colon cancer and had this amazing doctor that helped him out. This was Dr. Milsom at Cornell Weill Medical Center in Manhattan...this man is amazing. I went to see him and told him my issues, and he immediately gave me a test called a Cinema-defogram. This is where they record the way the muscles work in your colon..on video..on a clear toilet with liquid barium..it's a rough test. This was the greatest thing ever to me though, as he saw serious dysfunction in the muscles that move waste along in the colon, and this had led to the rectal prolapse. He also saw tiny holes in the colon/that it was porous, and waste bacteria was definitely getting into my bloodstream and making me just plain sick. He said I had a toxic megacolon, but had no idea what caused the condition. He removed lathroscopically my sigmoid colon, and did some sort of repair job where he sewed the remaining colon to my tailbone for stability. He noticed a frontal prolapse against the vaginal wall too, but he couldn't deal with that at this time he said. He said it wasn't critical. The recovery in the hospital was terrible, as believe it or not the spastic colon went into full swing..I would try to eat and throw up, the cramping was unbelievably painful, nurses had no idea what to do. I had a epidural in my back to block the pain, but that really bothered my back so they had to take it out. They gave me dialaudid to no effect, until a smart nurse gave me something that I still use to this day when my spastic colon acts up - Benadryl. She gave me a shot of Benadryl and my colon just stopped being insane..I got some rest. A week later I was going to the bathroom on my own and was able to come home. While I still have spastic colon issues occasionally, I no longer EVER have chronic constipation. I was able to return to school and live my life. As the years have gone by my stomach has gotten better and better, until two years ago I was able to eat salad again with minimal discomfort. However, my stomach does still get spastic colon...this leads to nausea, diarrhea, fatigue, I'm done for the day. I still get sick ALL THE TIME with colds, flu, etc. Right now I have a retracted eardrum/sinus infection that I've been on antibiotics for 15 days now and it's barely getting better. I still have eczema all over, (not my face though :-) ) , and recently I had total facial laser resurfacing to great success that I think you would never know how bad my face once was. I have no energy ever. I get pains in my lower legs that throb sometimes so much I can't sleep at night..in desperation I found some diabetic leg cream that actually helps a lot..this concerns me as why does diabetic leg cream help me>!?!? It increases circulation which is why I got it. I notice the leg thing is mainly at night or the morning...my hands and feet are always cold and going numb, I cannot make a fist every morning when I wake up, my feet fall asleep super quick. I eat super healthy ..lean meats, Mediterranean diet and always have, and I know this helps. If I try to eat something sugary I just feel terrible so I naturally avoid it. Sometimes I get pains like gout (I know I don't have gout - I know what it is from my Dad lol) in my big toe and this just confuses me..I can barely walk on it..When I wake up in the morning I feel plain terrible, like I know it sounds ridiculous but I NEED a shower..like need it..or else I feel stiff, achy, generally just crappy. After a shower I feel oiled up and ready to go...lol..totally different from when I got in. Advil is a wonder drug for me, I try not to take too much of it but if I do take it I feel like I'm on a vacation..everything just calms down, nothing aches..it literally makes me feel good all over. Which brings me to the end of this..the last two actually serious problems I have..about 3 years ago I started getting non-stop bladder infections..just non-stop..and they hurt extremely bad..finally my normal doc sent me to a specialist, who confirmed the type of bacteria, Streptococcal type B, which is a naturally occurring bacteria in your body, but it's not suppose to be in your bladder. He also saw my bladder was inflamed and angry from the constant infections. He put me on low grade macrobid 50 milligrams every day, and after a couple of months, I had relief. I now only get serious antibiotic needing bladder infections about 5-10 times a year, and they resolve within a week.Hooowever, if I don't shower in the morning, I will feel a bladder infection starting. When I wake up in the morning, the first pee of the day allllways burns. I also noticed that when my stomach acts up my bladder starts burning, never fail. I don't go to the doc much as they never know what to do for me and I have an extremely busy life but on a hunch I went to a gastro and got tested for a condition called SIBO, which is something to do with bacteria out of whack in your GI track. I came up positive. I started taking Florastor probiotics with a fancy antibiotic called Xifaxan which helps regulate bacteria in your GI for longer than you take the antibiotic. This combo has made my stomach the best it's ever been, and helped my bladder while I was on it. I finished the one round about a year ago, I have yet to see if I should have another or not. Just two months ago I went to the dentist..normal visit..I have always taken care of my teeth and they are nice..lol..he sat me down and said for 25 yrs old, I have some pretty advanced gingivitis. I had to have $3,500 worth of dental work at the gumline fixing my teeth or he said I was going to lose them all within a year. I was shocked..He showed me the pics of the x-rays and there is decay on my jawbone.
    Kateri 6 Replies
    • October 24, 2010
    • 06:26 PM
    • 0
    Flag this Response
  • PART IIAnyway...as my skin got better I started having severe stomach issues..the Spastic colon thing got out of control, and I was diagnosed with IBS, irritable bowel syndrome. I noticed that any sort of high-fiber/ruffage type foods made it worse - lettuce, oatmeal, etc. Then, literally 5 days after my 16th birthday, I just stopped being able to go to the bathroom. Just no more. Five days went by and I took a ton of laxatives, Senekot, and I finally went, and it was very painful. This pattern repeated and I told my parents..it never stopped repeating. When I tell you I was miserable every second of my life back then, it's true. My stomach would constantly be cramping, eating felt terrible, and I could never go to the bathroom without a laxative, and often only citric of magnesium worked, and it was SOO PAINFUL when it did..doctors put me on stool softeners and metamucil, which only made me feel worse..this went on for two more years, until the drug Zelnorm came out. This helped a pretty good deal. While I was on this drug I only needed to take stool softeners and sometimes strong laxatives, but I could function in life. This went on until I was in college.Meanwhile, all during this time, if there was a cold, flu, sinus infection thing to be had, I got it. It was insane how much I was sick..on top of everything else..I really don't know how I'm sitting here today..I was so crazy depressed as you can imagine. It's actually sad to me to write this all out..but hopefully there is hope it will all be gone one day, right?Anyway, at this point I'm in college, a very stressful good school, and the stomach thing really was slowing me down. Between the spastic colon episodes, the constipation, and this general feeling of fatigue and just terribleness, I was having a hard time keeping up. Some of my classes were physically demanding and I just didn't have it in me. One day, when I was home from school, I went to go to the bathroom and had a very sharp pain..I realized something left my body that shouldn't have. It was my large intestine, and it came out..you know where. I started screaming, I thought I was dying, my Mom ran in, she saw it, she was screaming, etc. It hurt, there was blood, etc. It came out about 6 inches. We went to the hospital, where they literally pushed it back in, and told me it was rectal prolapse, and with my issues it was bound to happen and it will happen again. That was it.I had to be careful not to strain too hard going to the bathroom, and it would always slip out a little bit but the doc's hope was that it would eventually repair itself if the chronic constipation ever went away. If it slipped out a little bit I would just put it back in myself. Gross I know. They gave me a colonoscopy at this time and it was clean..they gave me the rubber band pill test too (more than once) and it passed eventually, I didn't have blockages or anything..the liquid barium test too..and a test for Chrohn's disease as well..all clean...so yeah, a clean slate but everything ever wrong!Annnnways, now it's the beginning of my senior year in college and I am just feeling worse and worse. A professor caught notice of me looking just so pale, sick, and horrible and asked me what was wrong. I also was throwing up at least once a week at this point because trying to eat with stomach cramps and chronic constipation just makes your stomach freak out and reject everything. At the end of my rope, I told the Professor I had this undiagnosed nasty stomach issue that no one could really resolve. He himself had had colon cancer and had this amazing doctor that helped him out. This was Dr. Milsom at Cornell Weill Medical Center in Manhattan...this man is amazing. I went to see him and told him my issues, and he immediately gave me a test called a Cinema-defogram. This is where they record the way the muscles work in your colon..on video..on a clear toilet with liquid barium..it's a rough test. This was the greatest thing ever to me though, as he saw serious dysfunction in the muscles that move waste along in the colon, and this had led to the rectal prolapse. He also saw tiny holes in the colon/that it was porous, and waste bacteria was definitely getting into my bloodstream and making me just plain sick. He said I had a toxic megacolon, but had no idea what caused the condition. He removed lathroscopically my sigmoid colon, and did some sort of repair job where he sewed the remaining colon to my tailbone for stability. He noticed a frontal prolapse against the vaginal wall too, but he couldn't deal with that at this time he said. He said it wasn't critical. The recovery in the hospital was terrible, as believe it or not the spastic colon went into full swing..I would try to eat and throw up, the cramping was unbelievably painful, nurses had no idea what to do. I had a epidural in my back to block the pain, but that really bothered my back so they had to take it out. They gave me dialaudid to no effect, until a smart nurse gave me something that I still use to this day when my spastic colon acts up - Benadryl. She gave me a shot of Benadryl and my colon just stopped being insane..I got some rest. A week later I was going to the bathroom on my own and was able to come home. While I still have spastic colon issues occasionally, I no longer EVER have chronic constipation. I was able to return to school and live my life. As the years have gone by my stomach has gotten better and better, until two years ago I was able to eat salad again with minimal discomfort. However, my stomach does still get spastic colon...this leads to nausea, diarrhea, fatigue, I'm done for the day. I still get sick ALL THE TIME with colds, flu, etc. Right now I have a retracted eardrum/sinus infection that I've been on antibiotics for 15 days now and it's barely getting better. I still have eczema all over, (not my face though :-) ) , and recently I had total facial laser resurfacing to great success that I think you would never know how bad my face once was. I have no energy ever. I get pains in my lower legs that throb sometimes so much I can't sleep at night..in desperation I found some diabetic leg cream that actually helps a lot..this concerns me as why does diabetic leg cream help me>!?!? It increases circulation which is why I got it. I notice the leg thing is mainly at night or the morning...my hands and feet are always cold and going numb, I cannot make a fist every morning when I wake up, my feet fall asleep super quick. I eat super healthy ..lean meats, Mediterranean diet and always have, and I know this helps. If I try to eat something sugary I just feel terrible so I naturally avoid it. Sometimes I get pains like gout (I know I don't have gout - I know what it is from my Dad lol) in my big toe and this just confuses me..I can barely walk on it..When I wake up in the morning I feel plain terrible, like I know it sounds ridiculous but I NEED a shower..like need it..or else I feel stiff, achy, generally just crappy. After a shower I feel oiled up and ready to go...lol..totally different from when I got in. Advil is a wonder drug for me, I try not to take too much of it but if I do take it I feel like I'm on a vacation..everything just calms down, nothing aches..it literally makes me feel good all over. Which brings me to the end of this..the last two actually serious problems I have..about 3 years ago I started getting non-stop bladder infections..just non-stop..and they hurt extremely bad..finally my normal doc sent me to a specialist, who confirmed the type of bacteria, Streptococcal type B, which is a naturally occurring bacteria in your body, but it's not suppose to be in your bladder. He also saw my bladder was inflamed and angry from the constant infections. He put me on low grade macrobid 50 milligrams every day, and after a couple of months, I had relief. I now only get serious antibiotic needing bladder infections about 5-10 times a year, and they resolve within a week.Hooowever, if I don't shower in the morning, I will feel a bladder infection starting. When I wake up in the morning, the first pee of the day allllways burns. I also noticed that when my stomach acts up my bladder starts burning, never fail. I don't go to the doc much as they never know what to do for me and I have an extremely busy life but on a hunch I went to a gastro and got tested for a condition called SIBO, which is something to do with bacteria out of whack in your GI track. I came up positive. I started taking Florastor probiotics with a fancy antibiotic called Xifaxan which helps regulate bacteria in your GI for longer than you take the antibiotic. This combo has made my stomach the best it's ever been, and helped my bladder while I was on it. I finished the one round about a year ago, I have yet to see if I should have another or not. Just two months ago I went to the dentist..normal visit..I have always taken care of my teeth and they are nice..lol..he sat me down and said for 25 yrs old, I have some pretty advanced gingivitis. I had to have $3,500 worth of dental work at the gumline fixing my teeth or he said I was going to lose them all within a year. I was shocked..He showed me the pics of the x-rays and there is decay on my jawbone.
    Kateri 6 Replies
    • October 24, 2010
    • 06:26 PM
    • 0
    Flag this Response
  • Ok, time for the thinking cap.SIBO, eh? Which bacteria is mainly responsible? I got Clostridium Difficile from my antibiotic regiments. If it wasn't for the fact that you experienced constipation instead of diarrhea, that would be the direction I would head in.Allergies, irritable bowel syndrome, and skin problems in a women of your age... Have you ever been diagnosed or checked for interstitial cystitis? Did you know that benadryl helps?Please read this abstract I pulled from the following report:Systemic aspects of interstitial cystitis, immunology and linkage with autoimmune disorders.By Van de Merwe JP, Yamada T, Sakamoto Y.Departments of Immunology and Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The NetherlandsIt is recognized that interstitial cystitis (IC) is often associated with a number of diseases such as allergies, irritable bowel syndrome, fibromyalgia, inflammatory bowel disease (Crohn's disease and ulcerative colitis), systemic lupus erythematosus, and Sjögren's syndrome. The prevalence of allergies in IC is reported to be between 40 and 80% of patients. The background of the association is not known and does not seem to be the result of a generalized allergic constitution. Some report that treatment of allergy sometimes has a beneficial effect on bladder symptoms. Just a theory (I think its a good one =p), so please work with me here. Sjogrens syndrome could account for the skin problems you have (psoriasis and eczema). In addition, there is another complication of Sjogrens called Sjogrens Sicca, which can completely account for your lack of immunity against colds (due to the fact that your sicca aren't removing infiltrates as they should). In addition, Sjogrens can also affect your gastrointestinal tract, by decreasing secretions, and causing constipation, so of course it creates abdominal pain. Could that be what your experiencing? You have periodontal disease. Are you aware that Sjogren's leaves your mouth dry, which in turn will cause periodontal disease? Sjogren's also causes something called Painful Bladder Syndrome.You should also know though that there is a clear correlation between Periodontal disease and heart disease. If you have any other risk factors for heart disease, I'd suggest that you have it looked into as well. You have an increased chance of stroke and heart disease. Also, know that a complication of periodontal disease is that bacteria reproduced in the mouth can also be carried into the airways in the throat and lungs, increasing the risks for respiratory diseases.In conclusion, begin with an ANA test, CBC, CMP, RA factor, SED rate, ESR, and CRP, just to see if any inflammatory processes are currently in motion (especially since you seem to experience relief with Advil). In addition, I believe it is necessary in your case to order a Serum Protein Electrophoresis. If the ANA comes back positive, there are many subset ANA tests that will specifically point out any underlying autoimmune diseases you might be dealing with. If your CBC comes back with decreased albumin, WBC, Hemocrit, Hemoglobulin, or RBC, or your SPEP or other tests shows any abnormalities, you might be on the way to solving this.Don't give up. Feel better =)
    keanhe 86 Replies
    • October 24, 2010
    • 10:17 PM
    • 0
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  • Thank you for your help. I went to my doctor and he ordered a blood test..I also am going to go to a gastro and ask him to order some blood tests/other tests if nothing comes up here. :-))
    Kateri 6 Replies
    • October 30, 2010
    • 05:39 PM
    • 0
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