Surgery Consult - long weekend ahead

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MisB

MisB

Joined
May 25, 2010
Messages
446
hey everyone. Contacted GI and Mayo clinic today. Long story short - Mayo is not an option. GI had me call local surgeon for consult. They will get back with me on Monday. Currently, up Prednisone but I'm afraid to because I have such massive reactions of side effects. I raised it some, but I'm right on the borderline dose right now. Taking Lortab for pain which is suppose to cause constipation, but still going 4-5 times today, still have moderate pain, and taking valium for muscle spasms. Prednisone makes my muscle spasms worse. So, up the preds to help with cramps and make other symptoms worse? Other symptoms cause me to take pain pills too. Currently, I'm only slightly nausaus, pain is at a 3 on a 10 scale, but with the meds I sort of don't care? so I'm sort of maintaining.

I have to get through this weekend somehow. Still on liquid/mush diet and I can feel water digesting. Directions are if I can't tolerate the pain or get dehydrated, call GI who sends me to ER who gives me IV fluids, stronger drugs, and sends me home. I told my husband I'm tempted to eat something to put me over the edge, just to rush things and get it over with. I'm so tired of being in pain and drugged and laying here too miserable to do much of anything. I've been constantly in one or the other for.......days?....weeks?.....I can't tell anymore.

My husband is currently watching his favorite movie, the new Star Trek, and is very grateful that you are all here to listen to me. He's about had enough and feels helpless because he don't know what to do. He said to tell ya'll thank you for putting up with me. I'm going to snoop around and see if I can find a game or something to take my mind off things, but with the meds my brain's a little fuzzy. Please let me know if I get out of line anywhere.

There are way to many of you for me to personally say thank you to, and I don't want to offend anyone if I name any names and leave someone out. So, Thanks to ALL of you!!!!!!!! When I'm feeling better, there are several of you who will start getting PM's :hug::ghug: to each and every one of you. And, keep and eye on Joe, please? I just read his post and he's having a hard time too.
 
Awww Bev, that just sux, all this stuff you're going through at present. :hug::hug::hug:

If you don't me asking, how come Mayo is not an option?

Maybe you have reached the point where surgery is the best option so you can get rid of that nasty bit of bowel that's causing all the problems and start afresh. I know I have said it before on this forum but I do wonder how Roo would have fared if she hadn't required surgery at the time. Would she have had ongoing issues rather than be free of Crohn's symptoms for 4 years and counting.

I so hope you get through the weekend OK and can find some relief very soon. Sending healing (((HUGS))) and (((THOUGHTS))) your way.

Always thinking of you. :kiss:
Dusty
 
Sorry to hear about your difficult time Bev. I hope it gets better for you soon, be it with surgery or a better med schedule. Sending thoughts your way.
 
(((((((((((((((( Beverly )))))))))))))) I really don't know what else to say, dear, but to reitterate Pen's words..... just keep hangin' in there.... we're here for ya......
 
Mayo is not an option because they handle Crohn's with studies and they are full, or something like that, and they prefer the "unusual" or extreme cases and I would also need a bunch of money up front that I don't have. My family and I discussed it, and if I need surgery, it would be better for me to do that closer to home and under the county assist program that I qualify for. I met the surgeon in April when they said my condition was borderline surgery and he is very nice and a very good doctor. He has an excellent reputation in our community. My condition was borderline for surgery in April and now they say it is worse, even after 3 doses of remicade and 3 1/2 months of Pentasa and Prednisone. It was 4:00 today when the surgeon was contacted and they are to call me back first thing Monday morning. So, just hanging in there.
 
Thanks Bev, that all makes sense. It's reassuring to hear that you have a capable surgeon and one that you trust, that is so important.

So now I will add my hang in there's to you as well!

:hang::hang::hang::hang::hang::hang:

Take care Bev,
Dusty
 
Hi ya MisB,

Ditto to what Dustkat has been writing. When Monday seems like a long way a way i tend to break it down to hour by hour and celelbrate each hour that goes past. If my brain spends too much time in thinking mode I use a quick mindfulness strategy to put it in observing mode rather than thinking mode. I ask myself to name 5 things I can see. hear and feel (physically) and then I stop my heap spinning in negative thoughts. For I a while I stay in the here and now in observing mode. It does help my mind. Good luck and we are here for you. :hug:
 
Thanks for all the hugs and words of encouragement. I like the idea of observing mode vs. thinking mode. It's the first time I've heard it that way and sometimes when I'm scared it helps to be reminded of the ways we can get our mind to help us instead of work against us. Just bouncing around this website and enjoying the current med combination that has my pain level way down is allowing me to just relax and enjoy the moment. Thanks for being here.
 
Hi Beverly, hope you're getting some relief. I wish Monday would get here as fast for you as it will for me:). Take care I'll be around more tomorrow if you need to talk.
 
@ Beverly , Sorry to hear about your difficult time. The Mayo Clinic is rated in the top 5 in the world for addressing Crohn's CD be it either better meds or surgery.

I fought to keep my colon for 16 years and tried it all. Some of the time I was in remission but always on heavy meds. I could not handle the side effects of Pred,

I am now recovering after surgery last week and still in some pain, but I am the happiest men alive, I get up without the Chrohn's pain, and bathroom runs and feelinf depressed .

I hope either way you feel better. Sending you positive thoughts
 
Hiya Bev

I'm late as usual, better late than never!
It's Monday!! how did you get on sweetie? really hope you've got some answers, you shouldn't have to put up with this any longer
hope you're still resting
take care
xxxx
 
So much for the consult. Surgeon's office finally contacted me at 3:30 this afternoon to schedule an appt. for NEXT Monday!. And I thought it was going to be a long weekend. Managed ok with new pain meds, but I'm not sure if they are going to refill them or not. If they do, fine. If not and the pain gets bad enough, I'll go to ER. Not much else I can do.

My 15 yr old niece, Arianna, from NC has come to visit and stay for 3 weeks, so that's good. She keeps my mom and I company and helps around the house. My mom has also post-poned her cateract surgery until I'm getting better and we find out if and when I'm having surgery.

Thanks for being here everyone. I'll be popping in and out, but I'm going to try to keep myself busy watching movies with mom and Ari, plus Ari said she'll help me start going through some stuff. She'll lift any boxes, I just sit there and tell her what to do. We'll be going through some boxes of my father-in-law's. He was her great-grandfather, so she's looking forward to going through things, too. The fun part will be the family pictures. Ari will get to see some photos of her mother and grandmother when they were little.

Anyway, maintaining flare and pain with meds and diet, keeping my brain occupied, and trying to behave myself. It must not be too serious if the surgeon is waiting a week to see me so who knows? Maybe I won't even need surgery?

I know I'm rambling, it's late and I've taken all my meds which make me a little lala. I'll be around some and I hope everyone is doing well. If you're not doing well, please let someone know. it helps. You all are the very, very best friends a girl like me could wish for. Sorry....the meds make me kind of mushy, too. So, bye for now.
 
I hope you're feeling better Beverly. So a phone call. Next Monday's the consult....this could take a while. I know you've mentioned you don't like to take pain meds if you can avoid it, but remember they're not drugs if you're taking them for the right reasons. Hang in there sounds like an understatement at this point!!!
 
Bev, I hope this week goes by quickly for you. There was another thread where I believe it was you who had said that instead of counting how many days you have left to go, that you should count how many days you've accomplished. And I have to tell you, that has helped me a lot - they pulled me off of pred because I have to have another blood test and pred can skew the results of this one, so I've somehow accomplished 11 days so far without pred and without my flare coming back too badly. So I believe in you - you can accomplish this week! :)
 
I hope this next Monday comes quickly for you! Glad you at least have your niece in town to cheer you up and keep you occupied. Hang in there!
 
I am so glad you have company to be with you while you are going through this. I second what Marisa said..."I hope Monday comes soon for you!"
 

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