My Story

Looking back, I realize that I've been feeling crummy, on and off, for the past 9 years or so (since I turned 20). I have never had a big appetite, and have been teased my whole life about "being full" after eating just a few bites. And I haven't liked it either - I love food and eating and have often looked longingly at a delicious morsel that I just could not finish.

Then, I started having minor digestive issues: gas and bloating. Not every day, but often. And occasionally with gas painful enough to knock me on the couch for a few hours until it went away. Over the counter medications did not seem to have any effect. I tried several.

I realized most people have some quirky health issue to deal with, and this was mine. When I mentioned the symptoms to my doctor(s), they always suggested OTC treatments like Gas-X, Tums, etc., which I already knew didn't work.

Then 2 years ago, shortly after the birth of my second baby, the symptoms got dramatically worse. I seemed to have stomach pain all through the day. Mostly mild, but enough to make me feel really lousy, especially while taking care of a 2 1/2 and a 3 month old. I would feel instantly bloated and full sometimes before I even had my first bite of a meal. I wanted to eat, but just couldn't.

I lost my baby weight, and then just kept losing! I went down to 115 lbs (I'm 5' 11"). None of my clothes fit right and I had to buy size 0 jeans! Help!

Then, I started having horrible stomach pain at night. It would wake me up and keep me up for hours. Usually, I could also feel a painful lump on the right side of my lower abdomen. I could kind of massage it away and provide a little relief, but it was generally awful.

Frustrated by the non-help from traditional doctors, I went to a ND (Naturopathic Doctor). in January 2009. I don't know what I expected, but she was great. She actually ran tests (why didn't the MD's do this months ago?) and found out I had H. Pylori, low thyroid, low hormones, and was borderline wheat-intolerant.

I took a 2 week course of antibiotics to kill the H. Pylori, and wow! the symptoms were gone within just 3 days of starting the treatment. I was SO happy. I thought the H. Pylori has been the crux of my problems and now all would be great.

I enjoyed about 2 months of feeling great, then the gas and bloating started again. (Sigh) I thought it was just going to be a normal occurrence for me. Then, diarrhea. Oh boy. Not as bad as many people suffer, I only went once a day, but there it was - for months.

Then, at the end of April, I suddenly became really sick with much worse abdominal pain. It took a week to see my doctor, and she thought it might be the H. Pylori again. It would take a week to get the results for the GI panel back. During that week I was feeling worse daily. My parents and mom-in-law were coming over to help with the kids, since I could barely get out of bed. I wasn't eating - just mere bites here and there. That week, waiting for the test, my doctor gave me 2 IV treatments of vitamins and minerals. During my second treatment, she got the results back - negative for H. Pylori, but I had high inflammation, slight internal bleeding, and anemia. She thought I might have Ulceritive Colitis and recommended I see a specialist.

It was another 2 weeks before I could get in to see the GI doc (actually his assistant), and when I finally did, I was down to 103 lbs. She diagnosed me with C. Diff and got me set up for another round of antibiotics and scheduled me for a colonoscopy.

As she was giving me all my paperwork, I passed out in the office! Fortunately, my mom-in-law had driven me to the appt., and so could take me across the street to the ER. I got a whole liter of IV fluids for dehydration.

Back home I started on Flagyl, the first antibiotic prescribed for C. Diff. And my, my, it was dreadful. It made me so nauseous, that those few bites I had been eating now seemed like a feast. I could barely get anything down, just meager amounts of broth and tea. I was so weak and tired, but thought if i can just get through these antibiotics, I can start eating again and all will be well. But when I did finish the course, I was just as sick. Another test for C. Diff came back negative this time (good) but I was still not eating.

And then, a new symptom! Burning pain in my esophagus when swallowing. Goody, now I really couldn't eat. I was scheduled for the colonoscopy, and tried so hard to do the prep, but there was just no way I could get those 2 liters of prep fluid down. The first several sips made me vomit each time. I called the next morning and cancelled the procedure.

The next day, I went to see the GI doc again (this time the actual Dr., not the assistant) yeah! He was concerned about my health (now I was 96 lbs) and tried to convince me to do the colonoscopy. I didn't need convincing, believe me, but tried to explain I just COULD NOT do the prep! He said he had an opening that afternoon for an Endoscopy - could I do that?

I did the endoscopy that day. (It was a breeze by the way - nurses were super great - didn't feel a thing...) The Dr. found multiple ulcers in my esophagus and inflammation of the upper intestine. He gave me lidocaine to help ease swallowing pain (didn't work) and said I really needed to do the colonoscopy and scheduled me for a few days away. But this time he suggested that if I couldn't do the needed prep, i could go to the hospital and let them take care of everything, plus get some IV nutrition for a little strength.

I was so weak and wiped out I knew that was my only option. I had been resisting the hospital the whole bout of my sickness, and now I think why didn't I go in sooner?! I checked in on Friday, and they immediately gave me more fluids, lots of blood tests, and inserted a PIC line. I was pretty much freaking out during all of this.

Saturday morning, I had the colonoscopy. I was so weak that I was in and out of sleep while they wheeled me down to the procedure room. I even fell asleep as they were hooking me up to the monitors.

The results showed more ulcers on the right side of my lower intestine and lots of inflammation. He said he could pretty much diagnose it as Crohn's, but was waiting for biopsy results to confirm. That night they started me on Prednisone, and FINALLY TPN and Lipids (IV nutrition and fats).

The next morning I was already feeling better. (I also had some Percaset, which worked like a charm - hee, hee!) But I think the TPN really helped. By Monday, my stomach pain and nausea were completely gone and I was so hungry! They upgraded me to a "Full Liquid" diet which now included cream of chicken soup, and wow, was it delicious! I ate everything. The next day, I got to be on a "Soft GI" diet, yum-yum. Ground meats and over-cooked vegetables have never tasted so good.

I felt great. All stomach symptoms were completely gone, and I was eating, eating, eating. They wanted to keep me on the TPN and Lipids for several days, so I pretty much spent my time reading, playing with the adjustable bed, and watching the clock in anticipation of my next meal.

After 8 days in the hospital, they discharged me on Friday, but I was on the IV TPN and Lipids for 5 more days at home. A little awkward - I had to carry around a backpack, and the IV cord was a little short, but it wasn't too bad. I still have the PIC line in my arm, until my Dr. appt this Thursday, but I'm kind of used to it now.

In the 2 weeks I've been out of the hospital, I've been doing research on Crohn's. Trying to learn about the medications by Dr. will likely offer me, compared with the benefits of diet and supplements. I've changed my diet significantly and Incorporated and whole regime of various supplements, in the hopes of avoiding any pharmaceutical medications for as long as possible.

Right now, I feel fantastic. I eat all day long, more than I have ever eaten in my life. And no stomach pain or other symptoms what so ever. BUT - I am still on the steroid treatment, 20mg of Prednisone twice daily. I am nervous that it is only the steroids making me feel so good, but am anxious to get off them and see how my new lifestyle will help.

Tomorrow I'm going to the Dr., and hopefully he will start weaning me off this stuff. I sure hope so, the insomnia is terrible. I am able to blog in the middle of the night, but I'd rather sleep...