Gripe Session: Family Dr.'s results - not happy

[MisB]

Welcome to my gripe session:

My husband and I set our appts. for the same time. The Dr. spent over an hour with us today. My husband has had 2 major back surgeries and has 9 screws in his back. Plus 2 knee surgeries and fighting depression, but that's his story, not mine. After taking care of my husband, we started discussing my issues. I had to call the GI this weekend with major butt issues, I've had more pain, diet not progressing well, I'm weak and achy all over, and my sciatic nerve is driving me insane. I can't walk or stand more than 10 minutes without having to sit down. Apparently it's a side effect from the prednisone. I'm down to 25 mg per day and neither doctor wants to change the dosage up or down. I'm at a low enough level that most of the side effects I can deal with, but my flare isn't healing yet either so if anything they'll increase it making the side effects worse. SCREAM!

I told him I know he's a good doctor, been with him for over 10 years, and I'm okay with my new GI, but is there anyone in the area who treats specifically Crohn's? My GI even suggested another opinion when I went to him last week and he is my second opinion. FP said the GI is probably frustrated because all of us are doing what we should do...meds, diet, etc, but I'm not getting better. He said if anyone knows a local physician specializing in Crohn's, his associate would know. He's going to get back with me on that. I also overheard his dictation that if I'm not improving in a month he would send me to Gainseville. I've known a couple of people with various illnesses that received great treatment from a large medical facility in Gainesville. I think it's affiliated to the University there. Go Gators!!!

In the mean time......keep my scheduled appointments of remicade in 3 weeks and GI a week later. No medicine change, go back in a month, keep trying to advance diet slowly and try adding a little fiber, very limited activity because the steroids have weakened my muscles and bones. That's why I ache all over. When it gets intolerable, take a pain pill, which can cause constipation, so watch for that. As I can have a solid and loose stool during the same sitting, and vary from 2 days nothing to 10 times in 2 hours, it makes things difficult to treat. He said I am a very unusual case and it also sounds like IBS in addition to the Crohn's. He also gave me an open-end work excuse for my disability which is being approved from short term to long term. It's not much, but at least it's something. I would rather be working.

I'm ready to give up. Between cramps, aching all over, achy butt (Billy Ray Cyrus needs to re-write Achy Breaky Heart to Achy Breaky Butt - ), fatigue, limited activity which is fine because I don't feel like doing anything anyway, I am trying not to get depressed and irritable. It's also been raining alot which doesn't help much.

Oh yeah, did I mention I'm a recovering alcoholic with 15 years clean and sober so long term pain meds can create a whole other set of issues. I actually endured some hard cramps the other day just to make sure I was taking the pain pills because I needed to and not just wanted to.

:crabby1: :depressed: :yfrown: :grumpy: :kissgrits:

Now that I've got that out of my system..............I will be around reading posts but I probably won't respond to many until I get in a better mood. I don't believe in taking others down with me when I go. I am trying to maintain my sense of humor, so when possible I will toss out the smart comment. Thanks for letting me ramble again. I know I'm probably becoming a nuisance and you are all reading me at my worst, but it will get better. I promise. I appreciate you sticking with me.

 

[DustyKat]

Awwww Bev, I'm so sorry you are going through all this.

You sound at the end of your tether, understandably, so is it worth trying to get to Gainesville sooner rather than later?

Thinking of you, :hug: :hug: :hug:
Dusty

 

[Silvermoon]

(((((((((((((((( B ))))))))))))))) No one can ever know your pain, but I can sure empathize... I hate being the "whiney" one cause I think maybe some people think I do it just to get attention (that could be a hangup from my childhood...but that's a whole nother issue...and nother thread...lol :blush...BUT Pen said something in my thread today that made me feel a bit better, so I will pass it on to you.... We are all allowed pity parties. IT's your party and you can cry if you want to! lol. Anyway, if you ever do need/want to vent, feel free to PM me if you'd like.... sometimes I am not that great at advise...but I am a pretty good listener (reader?? lol).

I hear ya on the work thing too. I was on LTD for 18 months and just itching to get back to work. I might have rushed it a bit, but it a bit of relief knowing that at least most of the bills are being paid while you aren't working...one small good thing in a mess of crap.

Hang in there... we are kinda all in this together now...HUGS!

 

[Entchen]

Dear Bev -- CONGRATULATIONS on the past 15 years! WOWZA! You've met that challenge and you can keep finding the resolve to cope with Crohn's, too -- taking it hour by hour if you need to.

 

[MisB]

Dusty, Silver, and Kelly, ya'll are the best. Thanks for your concern and support. It felt better just dumping it all out here. I'm feeling a little better today. we'll see how it goes.

Dusty - As for Gainseville sooner, I think my dr. wanted to check with his associate first for a local dr. Probably in either Tampa or Sarasota. He's to get back with me.

Silver - When you need attention, just let me know. As you said, we are here for each other and you are helping me alot by just being here. I find when I help others, it helps me. Let me know if you need anything.

Kelly - Thank you. I told my family I was starting to look at certain foods the way I look at acohol. I think I want it, but when I think about what it will do to me, I really don't want it anymore. It actually helps.

I hope all of you have wonderful days!!!!!!!!!

 

[Astra]

Hiya Beverly

been there, so know you're pain and depression, and remember, your Big Book, says
'this too will pass'
hope you find the strength to beat this, you've come so far and made excellent progress, you're to be commended for that.
we're here for you, whenever
take care
xxxx

 

[Cat-a-Tonic]

Hi Bev, sorry to hear you're having such a rough time. I would definitely pursue seeing another doctor in Gainesville or wherever you have to go. In my experience, family doctors only have general knowledge and don't offer much assistance or insight for particular illnesses, especially such highly-individual ones like Crohn's. For the longest time, my regular GP thought I had a recurring case of gastroenteritis, and recently when I was flaring but my GI and GP were both booked up, I saw another GP who said I just have IBS and depression. Ugh! So I would definitely seek out a GI who deals specifically with Crohn's - I think the CCFA has a listing on their website of GIs who are specialists of certain things like Crohn's or UC. Good luck, and I hope things turn around for you soon! Hugs!