Hello, I am 25 and have been dealing with symptoms for probably about 6 years, but it is hard to say because of all the misdiagnosis and twists and turns along the way. In my mind the first sign of anything odd was when I has about 19 and started experiencing what I called "Cheerio Burps". That is anytime I ate anything I would experience these intense burps that tasted exactly like fermented Cheerios. I tried making changes to my diet and eliminating food groups to see if there was some connection, but nothing ever came of it. About 6 months after that I started experiencing intense fullness, burning, gas and soreness in my abdomen, from my rib cage to my belly button every night. I went to the Dr and they were confident it was my gall bladder. I spent close to a year chasing this lead, sleeping little, eating little and having test after test come back negative for any gall bladder issue, but all of the Drs I saw were sure that's what it was. During this period I was also putting on weight at an alarming rate considering that I was only able to consume about 1 small meal a day and a snack or two if I could force myself. I put on at least 50 lbs that year. I finally consented to go on anti-depressants because the only answer left seemed to be that it was in my head. It was also at this time that I developed migraines that left my whole body numb and me nearly blind in one eye for hours at a time. After 6 months with no relief I went off the anti-depressants and tried a whole new vein of treatment. There was Naturopathic Dr in my town that was know for having success with essentially curing multiple sclerosis in like 6 months even when a person was already in a wheelchair and extremely debilitated. I had been warned that the her treatments were bizarre and often had early side effects that were odd or almost unbearable, like breaking out in full body boils for a few weeks, but I was willing to give her a try. After a couple of consultations she put me on a "remedy" to take every 6 weeks and two tinctures for my stomach to take daily. I was skeptical but tried it. While I wasn't immediately healed my stomach and migraines also weren't getting worse. I also didn't have any odd reactions. After about 6 months with her I was feeling like I had things managed if not fixed when I made a fortuitous mistake. I was in a hurry to take my remedy and accidentally double dosed. Within about 15 minutes I was so dizzy I couldn't walk on my own and within 2 hours was completely blind and my whole body was numb from the nose down. I went to the ER and they treated my for an intense migraine, but I have not had one since, which was in 2/08. Additionally, my stomach issues started to go away and all the weight I gained started to melt off. I continued to take the tinctures but not the remedy and within 2 months I was symptom free and had lost 20 lbs. i stopped taking the tinctures even. I proceeded to be symptom free, though I still ate small meals and had a "bad day" once every month or two, from 4/08-2/10 and lost another 40 lbs. I had learned to limit my dairy and fat intake as well as rule out most sweets and absolutely all fried food and this was working, but they suddenly the pain started coming back. Within a month the pain, bloating and misery was as bad as it had ever been and now included horrible burning and acid reflux and I went to a new Dr. Once again, the Dr was sure it was my gall bladder and I went through all the stupid tests again and once again they all came back negative. I have tried to contact the Naturopath that helped, but she has moved and I cannot re-locate her. Anyway, this time I insisted that I see a gastro Dr though my primary didn't see the point. The gastro immediately saw that this was not my gall bladder and started a whole other stream of tests. In 7/10 I was diagnosed with sever gastroparesis, with it taking up to 72 hrs for food to leave my stomach instead of the standard 3-4. He put me a a variety of drugs to control the acid and try to get my stomach to empty faster. While we got the acid under control I still wasn't digesting things and was vomiting 7-9 times a week on average and sometimes that many times a day. 9/10 I had my first endoscopy and he found upwards of 60 ulcers in my stomach and duodenum. He was shocked and now believed that I suffered from peptic ulcer disease. Biopsies came back negative from cancer, bacteria or granuloma. On even more acid suppresants along with an entirely liquid diet I was able to cut down the vomiting to 2-3 per week and have some days that were nearly pain free, though the lack of nutrition left we weak and often cranky. 10/10 I has another endoscopy and it revealed little ulcer healing and a great deal of scar issue that was paralyzing by ability to push food out of my stomach. A 3rd endoscopy in 11/10 showed some healing of ulcers, and strictures around my duodenal valve. The biopsies from that procedure tested positive for non-TB granuloma and Crohn's was finally introduced as a possibility though I exibited no symptoms that were thought of as "Classic Crohn's". My insurance insisted on a colonoscopy before they would accept the diagnosis, so in 1/11 I had one and everything was lovely and clear. My Dr started consulting with Oregon Health Science University and their Infections Disease Department who recommendted a small bowel CT to eliminate any issue there as a cause. I had that in 2/11 and could finally say that I had gastroduodenal crohn's which effects somewhere between .5-4% of all Crohn's suffers. I was put on prednisone but it didn't seem to be helping much. I would have really good days followed by some of the worst ever and I started vomiting blood on my bad days. I had yet another endoscopy just this week and it showed that most of my ulcers had healed, but that I had developed a few nasty bleeding ulcers, mostly likely from the Prednisone. My Dr has taken me off of it now without a taper and is trying to figure out the next option. I am still on an almost entirely liquid diet and have a number of forbidden foods on top of that and vomit 1-3 times per week. I experience a lot of the blues as well as exhaustion and just want it all to be over. Unfortunately there have been so few cases that there isn't a whole lot known about treatment of my variety, so my Dr is having to call places like The Neatherlands and go off of a few case studies for advice in treatment. It looks like surgery to at least remove the scar tissue in my stomach and permanently cut the muscles and nerves in my duodenal valve are unavoidable in the coming months and it will be a lot of leaping and hoping it works as far as drug treatments. He wants to try Remicade next, but can't find another Dr who has treated GD Crohn's with it or would recommend trying it. Additionally, I live alone about an hr from my family, have no friends and given my unreliable health and inability to eat/drink opportunities to socialize are severely limited. I work full time and drag my butt to work no matter how bad a I feel - I have a strict policy of sending myself home if I puke at work though. To keep up with housekeeping matters I pay a kid a couple hours a week to help clean and carry my groceries up to my apartment. I have a boyfriend, but he lives 45 minutes away and only visits about once a month because of the neighborhood I live in. My weekends are pretty much spent on his couch watching movies or the occasional day trip somewhere, which always ends in me puking my guts out at several public locations and us cutting the trip short. Though he himself suffers complications from a bad gastric bypass surgery, he is an enthusiastic lover of food and is less than supportive of my all liquids diet. I cannot resist "oh, just one bite!" and it always comes back to bite me. I guess that is about all.
Anybody gone down a similar path? Tried naturopathic medicine? Had surgery to remove part of their stomach and/or cut duodenal nerves/muscles? There just isn't really anyone who I can get personal advice from around here. Any insights would help
Anybody gone down a similar path? Tried naturopathic medicine? Had surgery to remove part of their stomach and/or cut duodenal nerves/muscles? There just isn't really anyone who I can get personal advice from around here. Any insights would help
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