UPDATE-Still in hospital, no surgery yet.

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BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 11/19/2009 10:48 AM (GMT -7)   
Hey everyone,

I just wanted to give an update. I've been in the hospital now since Sunday night. Haven't eaten anything since Saturday night. The doctors are going back and forth on the surgery issue. My GI wants to me to heal more and then see. He's got me on strong antibiotics and just told me he's probably going to add steroids. The GI surgeon on the other hand tells me he doesn't think I'm getting out of her without surgery. I went down today and got a line put in for TPN. . . that didn't feel good at all! I've had 2 CT scans, one when I got here showed a lot of inflammation outside the bowel and a tunnel (I have a recto-vaginal fistula) and the one I had yesterday showed some improvement but not what they would've liked. I'm just tired of being here, tired of not knowing. Anyone else experience anything similar to this? I just like hearing what ya'll have to say anyway :-)

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/19/2009 11:27 AM (GMT -7)   
I know being in the hospital is miserable, but it is the best place to be when you are really sick because they can get the tests done quickly instead of waiting days. I was in the hospital once for about 3 weeks while the doctors went back and forth on surgery. They actually scheduled it then canceled it hours before, only to reschedule it a few days late. I was on TPN for most of the time I was in too. The steroids might do the trick to bring the inflammation down and buy you some time to at least decide what your options are. It is always best to go into things having considered every path instead of as an emergency. In my case it turned out that my stricture was scar tissue and needed to come out, but we needed to try the TPN and the steroids to make sure. It just was hard for me because it was over Mothers Day and my daughters were little and couldn't come in to see me. I was a bit scary with all the tubes.

Just remember how long it would be taking them to figure all this out if you weren't in the hospital, weeks and weeks to schedule these test. That should make it a little bit easier because for every test that gets done faster, you will be feeling better that much sooner. See there is a silver lining!

((((((Big Hugs)))))))
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 11/19/2009 11:40 AM (GMT -7)   
Hello,
Just wanted to say, Hang In There!
When I was diagnosed with Crohns my stay in the hospital was long. I was there for 10 days being poked and poked. Had 5 colonoscopy's and hadn't eaten in over a week. I had a tube down my nose and into my throat/stomach pulling up all the stomach fluids...it was miserable.
I remember trying to make friends with that stupid thing taped on my nose...cuz' I was going out of my mind trying to sleep with it!
When I finally ate real food... it felt foreign in my mouth and I started to cry. It was an egg.
Anyway, they decided to NOT do surgery after that time...and I ended up going back in and having emergency surgery! It's nice to avoid the emergency part of it...if you can. Should of had the surgery long before I had it...looking back at it now. I was on all the same med's as you ...and waiting. It's the worst...the waiting. But look at it this way your were you need to be and they HOPEFULLY can keep you out of pain during this stay! I had my laptop with me and downloaded SUDUko's lot's of them..to keep my mind busy.
How are you dealing with all the pred? Is it keeping you up at night? Do you have many visitors? maybe your not in the mood.
I hope they get to the bottom of things! Remember....you are BRAVE!
 
 
Flowery
 "Get busy living or get busy dying"
               
                         


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/19/2009 11:57 AM (GMT -7)   
((((((Dana)))))). I hope they'll figure it out soon. It was sort of the same with my husband too - he was in the hospital for 45 days, with c-diff and then diagnosed with crohn's on top of that. Once they did a colonoscopy and figured out how severe the inflammation was, he was followed by a surgeon as well, who went over all the details of the possible surgery with us, while the GI did everything possible to prevent that surgery, including 120mgs of solumedrol, bowel rest, and Remicade. It was remicade that saved my husband from surgery.

I hope the steroids, will help calm down the inflammation. Ask your GI about remicade and if it will be appropriate for you (it may not be the best if you have stricture forming or scarring disease). It really is best if you exhaust every medical option, before resorting to surgery. While it is very hard to wait these days for them to figure it out, it is unfortunately sometimes necessary. They must try something, and see if it works, then move on to the next thing to try, and wait, etc. If nothing works, is when they'll go to surgery.

(((Hugs)))) Hang in there sweetie. The TPN hopefully will give you energy. Do insist on some pain meds to help get through each day. Also, something to sleep at night maybe. This too shall pass honey. It's only a matter of time until you are out of the hospital and on the path to recovery.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/19/2009 1:48 PM (GMT -7)   
Yep, been there and done that. On my 2nd Crohns flare, my 2 oldest daughters were 9 mos and 2 1/2 years I was in the hospital for almost a month. They were trying to get the flare to calm down. I agree with the above posters, just hang in there and let them get you well. I know it sucks being in there, but right now its the best place for you.

Big Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 11/19/2009 2:11 PM (GMT -7)   
Im so sorry your going through this Dana! As most have said, your in the right place. I had a hospital visit 2 weeks ago, emergency doc's thought I was possibly septic, ended up just being a flare. I was in for 24 hours and the second day, a dr. came into my room, looked at me and said....."we know you are having a colostomy done on the 23rd, so what do you want us to do?" Im not kidding, "what do you want us to do?" was his question. Let me say, quite a few nasty horrible things went through my mind as to what I would LIKE him do have done, but family was in the room and I coudn't show them that I can turn into a potty mouth sometimes! lol. Waiting is the worst thing, but try to walk around, keep your mind as busy as possible!
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/19/2009 5:27 PM (GMT -7)   
 
 
cry  ((~BIG HUGS~))) cry   
 
 
 



~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia


BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 11/21/2009 6:51 PM (GMT -7)   
Latest News: Still in hospital, steroids for two days, antibiotics since Sunday night, TPN, and now my blood sugar has sky rocketed and I'm getting insulin. Doctors are still on the fence as to surgery, but my GI and I are on the same page to do everything we can to avoid it if possible. Thanks you everyone for responding and all the well wishes, that helps so much :)

NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 11/21/2009 7:00 PM (GMT -7)   
what kind of surgery are we talking?

My experience with surgeons is that they are head hunters who want money. If they are private, they want money. They want to operate. I hope this turns around for you.
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed


BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 11/21/2009 7:06 PM (GMT -7)   
Resection and then repair a fistula. That surgeon was wanting to do it 2 days after I got here, had it not been for my GI doctor I think he would've too. And I know now I was so inflamed it would have not been a good idea at all to do it. Thank God my GI doctor was here.

NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 11/21/2009 7:16 PM (GMT -7)   
Why resection? Do you have a stricture? Blockage? Why do they want to operate on the fistula? This might be unnecessary. The head GI told me I had a fistula and then one told me that I had 2. Apparently they went away without even using biological drugs. The head GI said that the fistula should heal with Humira.

Which drugs are you on? Have you tried any biological drugs? They should do the trick.

When I went to a private hospital, I had an abscess and was placed on Zosyn. The colorectal surgeon said he would remove my colon (the whole thing!) if it was still there. I then went to a public hospital, and they are telling me that the abscess is so small that they will probably not even operate. See what a difference it is? I think you should get another opinion.

Where are you located? Big city? You might have some bad doctors. If they really want to help you, they would have put you on IV steroids.

I do not trust doctors anymore. Doctors, just like almost everyone with a job, has their interests that supersede your's. Fight for yourself and get them to sit down with you and tell you why they want to do X and then Y.
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed


BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 11/21/2009 7:46 PM (GMT -7)   
Yeah that's what my personal GI doc is saying to the surgeon. He told me that if they went in now with all the inflammation he wouldn't be able to tell good bowel from bad. Bottom line it's my decision and if my GI says no I am not going to do it. I trust him, been with him for years and I know he wouldn't lead me down the wrong path. As to the fistula, I've had it about 4 years and I did remicade which worked on it, but it's back with this flare. I am on Humira right now but going back to remicade. I'm on IV steroids right now and antibiotics. I haven't eaten since Saturday night last week and they have me on TPN. I'm in the big city at a good hospital. I just think this surgeon is gung ho to cut, but I have the last say unless there is an emergency or something. Thanks for your input.

NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 11/21/2009 8:47 PM (GMT -7)   
Which city? Those surgeons make big, big money off operations. If I did not get my new, good GI, I probably would have been operated on to. It is kind of sick to think of how eager surgeons are ready to cut a 8-inch incision into your abs. Did you see the guy who was operated on recently? That is scary stuff. Who would want that?

As for the fistula, is it bothering you? When I had it, it did not bother me at all.
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed


BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 11/21/2009 8:52 PM (GMT -7)   
I did see it and OH boy was the incision bigger than what the surgeon had even showed me it would be. I do not want to go down that road until all other options have been exhausted. I really don't see the surgery happening this time around.

NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 11/21/2009 9:00 PM (GMT -7)   
If you want to talk on IM, I am open to it right now. I have nothing to do for the next 30 minutes. I would give you my IM, but it has my personal name, if you want to send me your IM, email me at historia2009@aol.com. I have AIM I think. Not sure.
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed

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