What the???

[SwtNdSpcy]

I just received a letter from my new GI in Indianapolis.
The letter stated she found mild chronic inflammation with no specific cause but no active Crohn's disease in my rectum, colon, and neoterminal ileum. Went on to say to continue taking the Imuran for maintance of my REMISSION?!?!?? Remission? Really? Am I missing something here? I vomit 3 times a day, I am always in pain, I go ALL the time. I am exhausted and weak. I have bowel accidents sometimes 10 times a week! I am SO lost atm! I have no idea what to do now.
I feel strongly I am not in remission, I believe my disease is active in my small bowel, not my colon. I call and call, and always go to voicemail, leave messages no one calls back. I can't schedule my follow up because I have to speak to the office assistant and she never answers the phone either.

 

[rottengut91]

Man, sounds like your in a pickle. Maybe it's time to get yet another opinion. I'm sorry, at the moment, I can't think of anythings else, except, being persistant. Keep at the doc. Call until you get the help you feel you deserve. Good Luck.

 

[Brindle]

Not sure how far away they are, but maybe it would be worth the trip to take the letter to the front desk and say "I am SO confused and DON'T understand this letter" ask to speak to the Dr. or at least a nurse. Jeez, I mean after all if you are currently in remission, and dealing with all of these"normal" issues, i would HATE to see how bad things turn when you flare. LOL my word people.

 

[SwtNdSpcy]

It's an 1 1/2 hour drive. I don't like to drive in general because my pain can be literaly blinding sometimes, so I usually have someone take me.
But my thoughts exactly! If this is remission, God help me if I have a flare!
I have been obsessively calling the nurse since I got this letter an hour ago LOL. I guess if I have to call every 5 minutes for days someone WILL talk to me!

 

[CDDad]

That sounds ridiculous. I think you need a new, newer GI. I suppose you told them about these symptoms. I hope it's just a mixup. You deserve better treatment!

 

[katiesue1506]

Are you seeing someone at IU by chance? If not, I saw Dr. Chiorean there (downtown Indy)... and while he is pretty straightforward and into his research studies, he was a good doc and got me started on the right aggressive track.

 

[BLM]

My dr kept giving me the run around like this, and I became such a bug to their office, they resented more...giving me worst care. So I had to get a new DR...sometimes it takes finding many new drs before you find the right one....dont give up, there is someone who will listen to you, validate your complaints and work with you to make things right...stay strong and I hope you feel better soon!!

 

[girlygirl]

Hi SwtNdSpcy,
Lady I think you should DEF find another GI! It's terrible that you have to suffer that much and not feel like you're being heard, or receiving solid answers!! You might try calling one of the best ER's in the area you could think of, asking to speak to a nurse, tell them you are in pain, and ask for their best reccomendation for a GI they are familiar with, or if one of the on-hand Dr's could reccommend someone for you.

Hope things get better for ya hun!
GirlyGirl

 

[Jennifer]

Yes you would have to call and call for days, maybe even weeks but by the sound of it, you need better care. That second opinion sounds mighty fine if you're able to get one. My first GI doctor was 4 hours away from me. If you have someone willing to drive you an hour and half already, maybe they'd be willing to go a little further.

 

[SwtNdSpcy]

Are you seeing someone at IU by chance? If not, I saw Dr. Chiorean there (downtown Indy)... and while he is pretty straightforward and into his research studies, he was a good doc and got me started on the right aggressive track.

Yes, Dr. Helper. She is the one who says I am in remission.

 

[SwtNdSpcy]

She was my second opinion. LOL. I told her everything, even about the perianal fistula, which is 10 years old and not painful anymore. It has nothing to do with how I feel, but I wanted to tell her everything. Now she has me going to a surgeon to see about fixing it. I have had enough surgeries that I actually needed, I don't see the point in fixing this fistula if it doesn't hurt. It's at most embarrassing and hard to keep clean. I told her it didn't bother me anymore. The only reason I am seeing the surgeon is because I have adhesive disease (which she agrees I do have) and a *possible* interabdominal fistula. Which was actually confirmed at my local hospital, but she insists it's only a possibility.
So this is where my confusion comes in. The *possible* fistula is somewhere in my small bowel. All the adhesive disease is in my small bowel. I have stricturing in my small bowel from scar tissue. IDK, I kinda feel like so what if my colon is ok, my small bowel obviously isn't.

 

[Jennifer]

Third opinion then? Basically keep moving on until you get the help that you need.

 

[SwtNdSpcy]

IDK, I did put a call in to my local GI. I have had him for years and he does listen to me. He only sent me there because he had no idea how to handle all the small bowel problems I keep having. Problems I feel she ignored. I was bawling my eyes out to the receptionist, so I am pretty sure she knew how upset I was and will give him the message. I also made an appointment for my GP tomorrow afternoon. I have the sigmoid in Indy at noon tomorrow too... but I feel like I have to have ONE of them listen to me now.

 

[Sue-2009]

Good luck Spicy...Only you really know how you feel! Isn't it wonderful when we sometimes get discounted! Gooooood Luuuuuck.....((((((((Hugs)))))))
Sue

 

[girlygirl]

I agree with CrabbyRelish! 3rd opinion for sure. Hopefully they can get you going in a direction that has you feeling better.

I've seen so many different Dr's myself over the past few mos... that I have a report of sorts together w/an index in the front cover. All the main info they need, copies of the ins card, etc. Sheet w/a list of medications i take, the dosages, the previous ones, the dates those were taken, lists the dates of the visits I've gone to and any notes i have for the visit (my own), copies of labworks, etc.. i have it PDF'd an indexed. Makes it much easier when going to see a new Dr. I just hand over all of my information and let them have it. Or i will ask if they would like it in advance and fax it to the office. Seems to be getting me more results these days, and it makes it easier to not forget about this or that.. ah.. and I also usually prepare a seperate sheet with a list of any questions or concerns I have then go over them with the Dr.

Probably seems like a little much.. but it's getting me results..
I sure hope u get to feeling better though! ((hugs))

 

[DustyKat]

That's just bloody ridiculous, toss her out like a dirty nappy! Easier said than done I know but the very least you deserve is to be listened to and validated so if it is at all possible to find someone else, do it! Good luck!

Dusty.

 

[SwtNdSpcy]

Sorry it has taken me awhile to get to this. I did talk to my GI. She said that she believed all my problems are being caused by the adhesive disease and pocket that is filling with fluid. She insists I am in remission from Crohn's and that there is nothing she can do medicinally for me. SHe told me it was important to keep the appt. with the surgeon and he would decide if there was anything he could do surgically for me, because she felt that was my only option for feeling better.
I kept the appt for the sigmoid. He was, again, focused on my perianal fistula and the skin tags. All he said was that he could fix those problems and since I am in remission it should be successful, but it was up to my GI if she felt I needed the adhesive disease and pocket fixed surgically.
Ummm, ok. Someone is gonna have to make up their minds on whose responsibilty it actually is to decide if I need surgery or not!!!!
My next GI appt isn't until Dec. 15th. I have yet to schedule my follow up with my surgeon. I have no idea what to tell him about the "plastic" surgery. I don't want that to be the only focus on his mind. Yeah, it's be nice to have all that fixed and actually stay fixed for a bit.. but I know it won't make me feel better (considering I have had 6 bowel accidents today).

 

[Hope]

Maybe you can be feeling some side effects of the Imuran. I know it is not a very well tolerated drug. Has your doctor mentioned anything about the imuran?

 

[SwtNdSpcy]

I don't think it's the Imuran. I have been on it since January of last year.
She says the the pain and vomiting are from the adhesive disease and narrowing of my Ileum from my resections. And she says the diarhhea is from bacteria building up in the pocket left behind from an earlier abscess.
I am not entirely sure I believe this. I have been on Imuran and Remicade, many Pred tapers, and courses of Cipro and Flagyl since Feb. of '09. I had two resections during this time, and continued to have symptoms and develop complications. I just kind of find it hard to believe after all this time with no change to my meds that I am spontaneously in remission and my symptoms continue due to unresolved complications, when the meds haven't worked in over a year's time. Now all the sudden it has? IDK... the most frustrating thing is no one wants to be the one to decide if I need yet another surgery or not, and the new GI is not going to change my meds and has actually reduced them.