Discussions By Condition: I cannot get a diagnosis.

Sick and Frustrated..Too Many things wrong to be from all different conditons PART 1

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • October 24, 2010
  • 04:40 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.

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.

Please continue onto next post..I'm almost done :-)

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.