Update on Jer's Girl

[Jer's Girl]

Just an update for all of you that have been following my story.

So, I saw my new Dr today and he was great! I was so afraid that he would be like the other Drs I have had to deal with lately and not want to deal with me, but he not only listened to me, he said, "yeah, I bet you are doing really badly. Your test results are awful. Your disease is very active."

He discussed a lot of options with me and decided to put me on a liquid diet (which is a little cold right before Thanksgiving, but anything to stop the pain).

He also said that he thinks that by the look of my CAT scan, I might have been misdiagnosed with Crohns all of these years. He thinks that based on where my disease is, I might actually have Colitis! We are going to do some tests to see, but if I do, he said that he would just remove the disease and I could have years without symptoms!

Whatever happens, I am on cloud 9 for now. Being taken seriously was like heaven. Having someone that is willing to look into different options until we finds something that will help me is amazing.

I'll write again soon, but I just wanted to let you all know how I was since so many of you have responded to my posts and helped me out so much through this difficult time. Thank you all for all of your help and support!

 

[shazamataz]

Yay! Good news!

 

[Tan]

Oh that is good news Jer's Girl... it really helps when you have an understanding GI. I went to one ten years ago cause I had refulx really bad and every morning would throw up bile from the inflammation and also if I ate too much and got bloated would throw up.. I could just be sitting there totally fine and then bang I had to race to the bathroom... many accident happened!! I was sent to a GI who keep saying to my parents are you sure she isnt anoreix and bringing it on myself... I am skinny naturally which doesn't help but come on. He just wasn't willing to listen to me at all and had made a decision about me base on how i looked. I was totally pissed off as I felt like I was getting now where and he wasn't even willing to listen to me. Anyway I ended up convincing him to do a endo and he found I did indeed have reflux and put me on meds which Im still on to this day.. but even then he said it was probably caused from the anorexia! Even when I went back 4 weeks later for my check up feeling a lot better I might add and had actually put weight on he the the nerve to say so how does this make you feel putting on weight... he just couldn't get pass the anorexia, I can tell you that was the last time I saw that GI. The next time I got sick I asked my GP to recommend another as I was not going to one who didn't listen to a thing I said and had judged and labelled me before even listening to what I had to say and therfore wouldn't be proactive in finding an answer.

Sorry I get sooo angry when I think about what I and others go thru because some docs have no clue!! Ha..ha.. But I found a really really good GI like 6 years ago who is lovely understanding and makes me feel like nothing is too much trouble or any question isn't too big or small to ask. Its great when you find a GI that you click with and who has a great bed side manner... it not only makes you more at easy to be able to ask whatever you want about your treatment, diease etc but also helps in actually getting better!

Good luck for the future I hope you find your answers with this new GI... keep us updated on how you go.

 

[Skinny Dub]

YA for Jers girl!! I'm glad to hear that you like your new Dr. and he is motivated to figure this out for you, it really makes all the differance in the world.

 

[Crohn's 35]

That is great, just knowing that a doctor is actually interested in what you have to say, makes you feel better. I know a few people with Colitis and it is true, you can have years of relief, the people I know have never had it come back. Lets hope you are the same. Happy, happy.

 

[Jer's Girl]

Thanks so much guys! It is really hard for me to believe that I really could have been miss-diagnosed for 12 years, but at least he is looking at this from every angle! (Could that really happen?).

Tan- I'm sorry you went through that. I got a very similar reaction from Drs before I was diagnosed. Glad to here that you have found someone that you trust now.

Shaz, Skinny Dub and Jettalady- Thanks for your support throughout this whole thing. It is sort of silly, but even still being in pain and feeling awful, yesterday felt like such a great day just because it was the first time I felt hope for my future for a long time. I really feel like getting this new Dr could be a real turning point for me.

 

[imisspopcorn]

I'm so happy for you.

 

[Jer's Girl]

Thanks Imisspopcorn. You are always so sweet and helpful to everyone. I am always glad to hear from you.

At this point I am grateful, but still so confused. I couldn't really have been miss-diagnosed with Crohn's if I had Colitis for 12 years could I? It has to be too good to be true. Not that Colitis is a picnic, but from what the Dr says, I could have an operation and be symptom free. I have been suffering for such a long time, that sounds like a joke.

Here are the facts. My pain is, and has always been on the left. I bleed heavily pretty much every time that I go to the bathroom. All of my disease is in my Colon and rectum. From what I have been reading, all of that suggests Colitis. BUT I have had three (including the one I have now) fistulas, which I guess suggests Crohns. I just had a blood test that is supposed to help determine what it is. I just don't see how it could be that simple and have them never have tried it. It has never occurred to me before that I could have anything other than Crohns.

Also, the ensures have really hurt my tummy since I can't handle Dairy. The fact that it is lactose free doesn't seem to matter to my gut. Does anyone know of a substitute product?

I know none of you are Drs, but any input would be appreciated. I hate the waiting game and I can not just leave it alone until I know for sure as my fiance would like me to do. I just feel way too up in the air.

 

[Tan]

My mum had told me a lady at her work was mis-diagnosed with crohns for 3 years before they re-diagnosed her with Colitis, she was always sick and never getting any better... after being diagnosed with Colitis she seemed to get a lot better cause they were treating the correct disease.
Not sure if this helps you but it shows it does happen!
Good luck.

 

[Jer's Girl]

That gives me a lot of hope. Thanks Tan!

 

[Pirate]

Such great news. I will have my fingers crossed even if I am a little envious of you.LOL. I know we all would love to hear the same news from our doctors so it really makes us happy to hear of one of us getting a new chance at being normal again.

Good luck Jer's Girl. I do hope the best for you.

 

[Jer's Girl]

Thanks Pirate. I still don't know what is going to happen yet. I hate not knowing.

 

[imisspopcorn]

I can't do the Ensure drinks either. Maybe you could blend your own shake with a soy/ lactose free milk and add some protien powder? I know gingerale has little nutrtional value but that always kept me hydrated and supplied some calories until things would calm down....Let us know when you get your results back

 

[Tan]

Yeah Im not keen on the Ensue drinks either but have found if I mix a protein powder with soy milk its not too bad and has really put the weight back on me and helps with my energy levels for the day!

 

[pewpewlasers]

That is great news! It is so great that you found a good doctor. Good luck!

 

[Cookie]

Here are the facts. My pain is, and has always been on the left. I bleed heavily pretty much every time that I go to the bathroom. All of my disease is in my Colon and rectum. From what I have been reading, all of that suggests Colitis. BUT I have had three (including the one I have now) fistulas, which I guess suggests Crohns. I just had a blood test that is supposed to help determine what it is. I just don't see how it could be that simple and have them never have tried it. It has never occurred to me before that I could have anything other than Crohns.

Hi Jer's girl. I could be wrong about this, but I'm pretty sure you don't get fistulas with colitis. What you may have is Crohn's Colitis (which is what my diagnosis was) which is Crohn's that is confined to the colon and rectum. Fistulas are very common with Crohn's Colitis. If you goole "types of Crohn's disease" you can find more info.

Hope you are feeling better soon!

 

[Jer's Girl]

Well Shadycat, as you suspected, I do still have Crohns. Still, good new Dr, trying new things. I knew it was a little too good to be true, but what can I say? We got to have hope right?

Also, the flagil that I have been taking has kept the fistula from forming, so I don't have to deal with that loveliness again for now.

I got to eat again (whoo-hoo!) which is quite a relief, and after over two weeks out of work, I am feeling well enough to go back (bitter sweet). I felt well enough today to bathe (including hair washing), see my Dr, wash two loads of laundrey, and change the sheets on my bed. AND I went out for Sushi- which I have been craving this whole foodless week! It may not seem like a lot to someone who doesn't know what its like to be in a flair, but I bet most of you know how good it feels to be able to do the normal things again.

Thanks again for all of your support!

 

[Peaches]

Aw man - I was getting all excited for you JG, had to start reading from the top. Well, let's hope the new doc will continue to be a great resource for you - everyone needs a really good doc with this disease right? Glad the flagyl is keeping those fistulas away as well. I have been diagnosed with Crohn's colitis (this was in the beginning of my diagnosis) although I believe it has spread to the ileum since I was first diagnosed. Hoping you keep feeling better!!

 

[imisspopcorn]

Chin up JG.....This is my motto.

http://www.youtube.com/watch?v=CmyUkm2qlhA

Yes, I watch too many children's movies!