# Gastroduodenal Crohns Journey



## alicat (Mar 18, 2011)

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


----------



## xJillx (Mar 18, 2011)

Hi Alicat!  You have been through so much!  You are very strong.  It is scary knowing you have such a rare condition, but it must give you some relief to know what you are dealing with.  And it sounds like you have a terrific doctor who is really doing his homework.  

You mentioned you may try Remicade, so check out the sub-forum in the Treatment forum.  Lots of great information in there for you, and you will see it has done wonders for so many.  

I really hope you find treatment that works for you, so you can start feeling better soon.  Please keep us posted!


----------



## Becks (Mar 18, 2011)

Hi Alicat thankyou for your reply im new on here too and in need of some support. I have read your story and and I really feel for you. I remember my crohns before I had my iliostomy and I was confined to my toilet in the end ! I hope your doctor can find some relief for you. Ill be here for support xx


----------



## Jennjenn (Mar 18, 2011)

Hi welcome 

I hope that you can find some relief soon to feel well.


----------



## Miss Underestimated (Mar 18, 2011)

Welcome! I'm fairly new too, and can't give much advice, but I can say you must be very strong to endure all that. I hope the docs find a way to get you some more relief. 

Your BF just has gotta stop with the "just one taste" stuff. Maybe try to force some liquids on him - just one glass... hahahaha.


----------



## alicat (Mar 21, 2011)

I appreciate everyone's support. It certainly can be an isolating disease but I am hopeful that this forum will be a good reminder that I am not alone


----------



## alicat (Mar 23, 2011)

Well, as soon as I can get my insurance to approve it I will be starting on Remicade. If that doesn't take then it is time to look seriously at hideous surgery. It sounds like my Dr. doesn't think the Remicade will work, but it is worth trying before we start talking about a j-tube for the rest of my life. So here's hoping Remicade works magic.


----------



## xJillx (Mar 23, 2011)

Yes, I hope Remicade will do wonders for you!  How quickly do you think you'll hear from your insurance?


----------



## alicat (Mar 23, 2011)

Well, if it goes like all the other procedures and medications that have need special approval, they will deny it sometime next week, my doctor will rage and throw a tantrum and the week after that it will go through. Luckily my doctor is doing all the pre-tests and such before approval so I can start ASAP. I am a little nervous though because I was on Prednisone for only 3 weeks and I got walking pneumonia followed by bronchial pneumonia, so if the Remicade lowers your immune system even more God only knows what I will catch.


----------



## Jer's Girl (Mar 24, 2011)

Hi Alicat!  I really hope that you can get on Remicade soon!  It really helps a lot of people.  Dealing with the medical community and insurance companies can be frustrating to say the least, but just keep fighting and eventually someone will help you.  Welcome to the forum!


----------



## alicat (Mar 24, 2011)

Thanks for the welcomes and support. I am actually going to see a Naturopath/Homeopath next week just so I can say I exhausted all options. Since one got me into remission before I even had a diagnosis, I am hoping this one can help me again. We will see if they are open to partnering with my Dr, the last one wanted me off any medications, soda, coffee or mint for 2 weeks before I could have any treatment. I don't think I could do that at this point.


----------



## ameslouise (Mar 25, 2011)

Hi Ali and welcome!

Hope the Remicade does the trick for you. You have really been thru the ringer!!  If not, sometimes surgery, while difficult and painful, can end up leading to a much better quality of life.

Keep us posted on the Remi!

- Amy


----------



## alicat (Mar 26, 2011)

Will do. Fingers crossed Remicade will work miracles for me.


----------



## alicat (Apr 3, 2011)

Well, so far my insurance is continuing to push back on the Remicade. Much like I had to have a colonoscopy even though I had no bowel symptoms and granulomas in my stomach before they would recognize the Crohn's diagnosis, I have to go through at least two other types of drugs and fail before I can gain approval for Remicade. My Dr is on the 3rd appeal. They also started a policy of adding an additional $500 co-pay on top of my regular about $200 for each Endoscopy. Since I am have one every 2-3 months for the foreseeable future that is huge to me. I am now appealing that now too.


----------



## alicat (Apr 3, 2011)

On the upside though I met the the Naturopathic Dr and he did some electromagnetic current therapy that so far has had a major impact. I had it done Friday night and have been eating many "dangerous" or forbidden foods, like solids and french fries, and I have been experiencing only mild discomfort. I feel better than when eat "approved foods", so this has me optimist that combined with a good diet and some combination of drugs I could be on an improving trajectory. I have already planned to go in again in two weeks for another session.  Have any of you tried anything like this and seen results? It was painless and astoundingly effective. 5 minutes after it was over I felt like 100% for the first time in months.


----------



## Miss Underestimated (Apr 6, 2011)

I've never had electromagnetic therapy, but I've listened to some discussions/talks about it by people who are trying to develop it as a way to treat many diseases. It makes some sense - our bodies are all-electric, anyway.


----------



## alicat (Apr 11, 2011)

Latest update:
I am getting my first Remicade infusion tomorrow. A little nervous but really crossing my fingers it helps.
It seems like the effects of the electromagnetic therapy and completely wore off, so I will need to look into another appointment soon. It really has made an amazing impact. I had a week or normal bowel movements for the first time in probably a year and reduced my pain by 75% for a week. Totally worth continuing.
Started the Selective Carbohydrate Diet today. Hoping it will also help, but fearing I am not hardcore enough to commit 110%, which is what it seems to demand. We will see.
Hope y'all are doing well.


----------

