Bad day, no help from docs

[Lindajoy]

Hello, everyone,

I'm having a horrible day. I wonder if I can ask your opinions. I'm so frustrated right now, I could just cry.

After feeling constipated for a few days, with a bloating abdomen, I had a rush call to the bathroom, with lots of stool, then bleeding (ugh, I don't usually bleed with this, scary!!), then sooooo much pain. With Addison's, any stress is not good stress, and I was not feeling well at all.

Anyway, talked with my GI guy. He's actually trying, but he said he doesn't have enough yet to call it Crohn's and wants to do another colonoscopy tomorrow.

I don't know what else he needs to call it Crohn's. I have inflammation, bleeding, pain, but yet I'm on hydrocortisone for Addison's (42.5) and it's getting worse right now. (The pain did go away about 30 minutes after taking my noon dose.)

I'm so frustrated. On top of all this, I have the flu, and my GI guy doesn't believe in stress dosing, and even my gp won't as he knows how hard it is for me to come back down once I do.

Any support of any kind would be greatly appreciated.

Lindajoy

 

[Jennjenn]

I hope that you start to feel better. But the prep for a colonoscopy is rough enough to go through especially with a flu. I hope your doctor knows that you have the flu if he is putting you through the prep. You can get very dehydrated and feel even worse.
I hope things work out well for you and that he gives you answers.

 

[Lindajoy]

Hi, JennJenn and thank you for the response.

Yes, my doctor knows I have the flu, but he said there's nothing he can do about it and to go to the ER should I start to experience problems. He knows I have Addison's, as well, and doesn't think much of it, either. I feel like giving up, actually. Too sick to argue, that's for sure.

Thanks, again.

Linda

 

[misscris]

I'm sorry you're having a rough time Linda. I don't know anything about Addison's disease to be honest so I don't know what that can or can't implicate or add to Crohns. I hope your colonoscopy does give you some answers. Good luck with your prep and I hope it all goes well.

 

[Mountaingem]

Maybe the doc should consider a bowel infection. I've had similar symptoms from bowel infections, usually brought on by certain foods (nuts,popcorn) or stomach flu/food poisoning.
Since you're immune system is compromised from the pred, as well as you're already on pred and you're getting worse, you might ask the doc's for a stool test (not pleasant but not as bad as colonoscopy prep). Also blood tests to check white cells, inflammation levels. Hope you're on the road to recovery soon-keep us posted!

 

[Jer's Girl]

I don't have any advice to offer, just support! Hugs for you and I hope you get answers soon!

 

[Lydia]

A bowel infection can feel a lot like the flu. Fever, chills, body aches, etc.

 

[Lindajoy]

Thank you, everyone, for your suggestions and support, but I guess it doesn't matter much right now anymore, as my GI doc dumped me today. No scope tomorrow. He's upset that I wanted to be stress-dosed for the procedure since I have Addison's disease (no adrenal function) and have to be on hydrocortisone since I produce no cortisol of my own. He thinks I don't need to be stress dosed, although my Addison's doctor gave us a protocol to follow, and now the GI doctor said that it pits him against my Addison's doctor and he doesn't like that, that it undermines his position as my doctor, and it shows a lack of faith in him that he's doing the best he knows how for me. (He is not, by the way, an endocrinologist with knowledge of Addison's.)

Uh, I have Addison's and am supposed to be stress-dosed even to have my teeth cleaned, so...But, even though I'm bleeding, having severe pain, etc., he's mad and dropped me. Don't know what to do now but try to find someone tomorrow, and in the meantime, pray I don't have to go to the ER.

Thanks, anyway, everyone.

Linda

 

[Mountaingem]

OMG!!!!!That really sucks, what are you supposed to do, disregard your Addison's just because HE says so? Unbelievable!
Well, maybe this is for the best and you'll find a doctor that's willing to work with your Endo doc, it's so important they work together for your treatment.
Maybe you should go to ER, they should have a GI doc on call. When you tell them your symptoms and that you have Crohn's, they should have you see him/her. Then they can do the tests and get the results right away. I know it completely sucks to be admitted to the hospital, but it's better to get the answers you need.

 

[Lindajoy]

Hi, MountainQueen,

Yes, the more I think about it, the madder I get, so I'm trying not to think about it as it's not doing my guts any good.

The problem here is, we have only one GI group, and if you have problems with one GI in the group, the others don't really want to take you and it's a long process to switch, if you're allowed to switch at all. Where I live really stinks.

The Cleveland Clinic GI I see for the liver involvement in all of this doesn't want me to travel the three+ hours to get there for testing since I'm bleeding and we don't know why. She's afraid I'll have a problem on the road. Thus, I feel like I have absolutely no avenue right now.

Any suggestions would be greatly appreciated. Oh, I am seeing my pcp, but not until Thursday.

Linda

 

[Mountaingem]

Well, unless you start losing alot of blood or the pain worsens, I guess you might have to wait on your pcp. You might call his/her office and leave a message today so at least they are aware of what's happening to you. Possibly they can have a plan for you when you come in.
Maybe your Cleveland Clinic GI might have further suggestions of you call her and explain the situation your facing with the local GI.
Me personally, I would file a complaint against that doc/group, all this ego posturing of that GI group is costing you precious time treating these new complications. Also, you may incur more expenses/time off work/distress directly caused by this that undoubtedly will affect the Addison's. Just my 2 cents.
I hope things improve for you soon, try not to get discouraged and tomorrow I'm sure your pcp will help. Sending a big *HUG* your way!

 

[Jer's Girl]

I am so sorry this has happened to you Lindajoy. I hope that you find a better GI as a result.

 

[Lindajoy]

Thank you, again, everyone, for your support.

I did call my pcp, who is seeing me Thursday. I hope he can help somehow.

I'm still waiting on the GI from Cleveland Clinic to call and offer advice.

I have another of my doctors asking a GI doctor in the group of the one who dumped me if he will take me, as a personal favor to her. This other doctor of mine is my therapist who started treating me last year after my Addison's crisis when I nearly died. She deals with people with chronic illness. She is friends with one of the other GI's and said she'd speak to him to see what can be done.

So, in the meantime, I wait. The pain is better today, thank Goodness. No blood so far, but still mucus (seepage, I guess). Does that come with this?

I've also noticed some spots on my leg, below the knee, little itchy, red spots that look like poison ivy bumps maybe. I've read those can come with Crohn's??

Thanks, again, everyone. Between my Addison's and this bowel stuff, I'm whipped! :ybatty:

Linda