Newbie From Oregon

[MistyTwistee]

Hello everyone!! I have never really posted on a Crohn's forum before, but as I can see from this board, I am so not alone.

My story...begins in 2003. After a trip to Disneyland where I started to experience extreme fatigue, stomach pains and bleeding. After I got home and had extensive testing for a few weeks, I was diagnosed with Ulcerative Colitis. Was immediately put on a high dosage of Prednisone (aka the devil drug) and Asacol. I would start to feel better so they would taper me down off of the Prednisone, and as soon as I got to about 10 mg's they cramps and bleeding would start all over again. In June of 2004, my dr ordered ANOTHER colonoscopy to check to see what was going on, and one of the biopsy's showed dysplasia in my colon. My dr said my colon had to go and I had two options. One, a colostomy bag which would be permanent. Two, having a J-Pouch surgery. The J-Pouch surgery wasn't an option where I lived because the only dr in my area that did the surgery was deployed to Iraq. So I would have to travel 3 hours away and be away from my family. I was so confused on what to do and my dr wanted me to act fast because of the precancerous cells. Well the day that I was supposed to call my dr with my decision the dr in Iraq came home!! So I was scheduled for the J-pouch surgery in July of 2004. The surgery took 8 hours and I was in the hospital for 12 days. I had a temporary ostomy for 8 weeks while my insides healed. I went back in October 2004 for my take down surgery and then was told I was UC free!! I got to taper down off of the Prednisone and go about as normal of a life as I could have without having a colon.

Things were great for almost 3 years, when during a routine exam, my dr found blood in my stool. I seriously felt like my whole world crashed around me all over again. Things were soooo GOOD. I had my life back, my kids had their mom healthy and active and not so tired. I was devastated. So I was ordered to have an endoscopy and a colonoscopy. The results came back a few days later. I had bleeding in my small intestine and around my pouch as well as inflammation at the top of my stomach. I never had UC, I had Crohn's disease. The first thing that came out of my mouth was NO PREDNISONE! I didn't win that battle. Now, I am dealing with acid reflux, and constant flares. It seemed like I was fine until the dr found that darn blood and then it just set everything off. I was used to frequent bathroom trips before, because of my j-pouch and lack of colon, but now it's ALL the time. It makes it very hard to do anything.

That's my story, my life. I feel like my world revolves around Crohn's and I really want to just kick it's butt!! LOL

 

[tiloah]

Oh I miss living in Oregon. What kind of treatment are you on now? I hope you are able to get things under control. Welcome to the forum.

 

[MistyTwistee]

Oh I miss living in Oregon. What kind of treatment are you on now? I hope you are able to get things under control. Welcome to the forum.

I just finished a taper of Prednisone. And I am on Canasa.

I have also acquired allergic rhinitis so I take Loratadine every night. As well as Prilosec for my acid reflux.

I feel like it's finally getting under control. I know that there are some people that believe that diet has nothing to do with Crohn's, but I am willing to try anything. I have cut soda completely out of my life to see if that will help with the acid reflux?

 

[xJillx]

Hi Misty and welcome! I am so sorry about your Crohn's diagnosis. It must have been very difficult to hear after thinking you had UC for so many years. But I am glad thinks seem to be getting under control for you. I hope things continue to improve.

As far as your treatment, is Canasa suppository the only thing you are taking at the moment? That will not address the inflammation in your small intestine. You can't stay on pred forever, so you'll need a maintenance drug to target that area. Have you discussed other treatment options with your GI?

 

[MistyTwistee]

.

As far as your treatment, is Canasa suppository the only thing you are taking at the moment? That will not address the inflammation in your small intestine. You can't stay on pred forever, so you'll need a maintenance drug to target that area. Have you discussed other treatment options with your GI?

My dr seems to think this will help with the inflammation around my pouch. That seems to be what she is the most concerned with. I am at my wit's end with my dr. though. I had a GREAT dr before, but had to move due to my divorce and the dr here drives me insane. She wants me to eat Activia everyday. She is HUGE on probiotics. She also keeps prescribing me super strong antibiotics, which I do not understand at all. She is Ukranian and has horrible broken English. I am thinking that it is time to seek out a different dr, or even drive the 3 hours to see my old dr.

 

[ameslouise]

Misty - Your story is mine to a Tee. UC, j-pouch, then re-DX with Crohns. I felt my world crashing down as well. I was done!!! I was disease free! Or so I thought. It took me months to accept my new diagnosis. So, I have been exactly where you are and boy, do I feel your pain!

My advice would be to find a new GI that you like and can connect with. You will be with your GI for a long time and you need to find one you really like. It was hard for me to accept that my doc is younger than me, but then I figured we would be dating for a good 30 years or so and then it seemed fine!

As usual I totally agree with Jill - the Canasa is not strong enough to touch the inflammation in your small intestine. The antibiotics, unless you have a fever or infection, can help but they can also mess up your flora, which is probably why your doc has you on probiotics and yogurt.

IMO, you need to be on something stronger to deal with the inflammation. There are tons of treatment options out there and you can read about a lot of them in our Treatment section.

Hopefully the heartburn will cool off now that you are off pred. Have you tried ginger tea or apple cider vinegar? Try googling for some natural remedies.

Good luck - PM me if you want to chat off thread about the UC to CD diagnosis. I know it really messed with my head for a long time!

But this forum has helped TONS in helping me understand the disease and just giving me support and advice and making me feel like a real person again!!

- Amy

 

[MistyTwistee]

Wow!! I am so thankful for finding this forum. I really feel alone at home when I try to talk to my husband and daughter about stuff. They just don't understand how I feel. They try their hardest to always be here for me, but I really think unless you are someone suffering from these diseases you just don't get it. I have lost jobs because of it, and my ex bosses always look at me like "it's just a stomach ache". I still feel like I have so much to learn about Crohn's because everything I knew before was about UC. I have kind of been in denial and have not wanted to even know anything. Thank you for all of you advice though. I have decided it's time to take action so I can feel better!