In the hospital for the 5th time this year :(

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80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 12/14/2010 3:16 AM (GMT -6)   
Hi everyone,
I'm writing from the hospital...I came into the ER tonight thinking I probably have another obstruction, and they just did a cat scan and when they get the results they will probably admit me. I have had no output for about 12 hours... :( I'm so discouraged. This is coming right when I was starting to think that maybe I was going to be ok. I only had my ileostomy in March, and then a blockage/revision in June, and then removal of scar tissue in Sept, and here I am facing a FOURTH surgery in less than a year from my original one.

I was just starting to get over my fear of every little pain becoming a hospital stay and now I'm right back at square one. I feel like I'll never be normal. I hate this. Not to mention that, just like the first obstruction, I drove myself to the hospital and am sitting here by myself AGAIN. Being alone in the hospital sucks.

Plus now I'm going to have to miss FIVE christmas parties I have this week and my students (I teach 5th grade) will have their holiday party without me. I am done missing out on life. This is hell. :(
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 457
   Posted 12/14/2010 3:21 AM (GMT -6)   
I'm sorry to hear stephanie. As you know a lot of us have been through this and if you need someone to talk to let me know. This has been the worse year for me since I still cannot sit and I have to have another surgery on the 20th.
I Hope you get better before the Holidays. Keep your head up.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/14/2010 6:55 AM (GMT -6)   
so sorry to hear this. is it scar tissue causing you all of this? frequent obstructions def means something is wrong. i hope your drs can figure out how to solve this. hang in there, hope you feel better soon and able to enjoy the holidays. keep us posted.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/14/2010 7:11 AM (GMT -6)   
Supposedly I'm free and clear of scar tissue, according to my last surgery. My bowels just keep twisting up. I don't think there's a way to stop that from happening. It's so discouraging. Why do some people get an ostomy and have no trouble? I mean, don't get me wrong--I'm still happy I made this choice, but I just wonder why everything is heaping onto me? I've only had this ostomy for 9 months and already I've been through just about everything you can go through. I just want to live my life.

PS THE HOSPITAL IS SO BORING!!!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/14/2010 9:16 AM (GMT -6)   
     Stephanie, did you have your entire colon and rectum removed?  That is what I had done.  Only problem I've been having since my operation is in the anus.  My surgeon left that intact and I have hemorrhoids rolleyes .  I also still have drainage but my surgeon said that is a good thing it is coming out and that is the reason he left the anus there.  I am so sorry you are suffering so.  I will keep you in my prayers.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/14/2010 9:39 AM (GMT -6)   
i know what you mean.. it's so discouraging when things don't work out as they should. i can really understand your frustration. if it's not scar tissue, then i wonder what makes it happen over and over again..??

i hope someone will come to visit you soon. and i hope things do work out for you soon and you don't have these obstructions ever again. do you have the results of the ct scan yet?
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 12/14/2010 10:33 AM (GMT -6)   
Stephanie I am so sorry to hear you are in the hospital sad What will they be doing with this surgery?

I would come visit you if I was in Florida!! Hang in there...the first year is always difficult especially when we've had such MAJOR surgery. I spent my share of the first year with complications and I am sure we are NOT ALONE cry

Is there anything we can do to help?
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/14/2010 10:39 AM (GMT -6)   
Christine, my whole colon and rectum are gone. None of that is the issue, thankfully.

The results of the ct scan are back: I have a blockage. My intestines have formed a loop somehow. I don't know why this keeps happening. It is so discouraging. I don't want to go through another surgery and healing, but it looks like that's what i'm going to have to do.

My stoma nurse just came to visit! It was nice to have someone to talk to for a while and I'm glad to know they're just down the hall.

I will meet with my surgeon sometime today (you all know how it is, waiting around) to find out what he wants to do. I am assuming surgery. :(
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 12/14/2010 3:35 PM (GMT -6)   
Stephanie, I am so sorry that this keeps happening. I hope the surgeon has good news and some insight when he comes by.
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 12/14/2010 5:32 PM (GMT -6)   
ugh! I'm so sorry Stephanie.
I get obstructions commonly, but they've always resolved at home. I'm so sorry. Keep us posted.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/14/2010 6:12 PM (GMT -6)   
     Stephanie, does the doctor have any idea why this keeps happening? Nothing was ever mentioned to me about obstructions.  Did you have Crohn's Disease or UC?

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 12/14/2010 9:47 PM (GMT -6)   
How are you doing?
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/15/2010 4:56 AM (GMT -6)   
Oh Stephanie, I'm so sorry to hear that you're in the hospital again! sad I wish there was some way they could keep your intestine from looping around itself. Maybe you need to stop doing so many cartwheels! (okay, I hope that made you crack just a little smile :)

I can relate to your situation and understand how frustrating it is to keep having problems. I've had 3 surgeries (2 blockages from scar tissue and one that caused a perforation) and 5 hospitalizations since my proctocolectomy. It has been a year and a half since my last surgery or hospitalization, so there's hope that things can and will get better!

You are not alone in that boring hospital. We are all there with you cheering you on! :-)

Hang in there,
Cecilia

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 12/16/2010 3:34 PM (GMT -6)   
I'd really be interested in taking a poll of all of us that have had surgery that left us with ostomies and where we had the surgery done.

For me it was U of Chicago almost 5 years ago and I've had no problems at all.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 457
   Posted 12/16/2010 5:51 PM (GMT -6)   
Cleo- That's where I had mine done. Dr Hurst.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/16/2010 9:31 PM (GMT -6)   
I'm not concerned about my surgeon's ability, if that's what you're getting at.

I have Crohn's and I don't know if that even has anything to do with this.My intestines just keep looping at my stoma site and my surgeon has just placed a tube in there at this point to straighten it out.Once my insides aren't so bloated from this trauma he wants to do another (probably outpatient) procedure where he puts some sort of mesh in there to keep my intestines nailed down.

I'm just sick of this.

And to make matters worse, I had brought my macbook laptop into the hospital so I could write lesson plans for work.The computer belongs to the school I work for. Two nights ago while I was asleep and drugged up, it was stolen! Unbelievable.Thankfully my friend is letting me borrow her computer and also thankfully my work is being so nice about this. But seriously, when it rains it pours. I just wanted to be able to enjoy Christmas.

Stephanie

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 12/16/2010 9:47 PM (GMT -6)   
STOLEN! that sux! who the heck.....Maybe a janitor?
Chassity
29y. married with one beautiful daughter born 11/20/07
-2002 dx with severe pancolitis u/c; 12/19/08 had total colectomy; 12/25/08 emergency surgery due to abscess-had to redo ileostomy and switch to left side; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
Feeling Fabulous Now with my ileostomy!!!!!
Pregnant with second baby due 5/26/11

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 12/17/2010 7:36 AM (GMT -6)   
Stephanie~sorry to hear about he laptop mad

How long will you have to have the tube? I know someone who had similar issues with twisting and the tube really helped get thing under control (different diagnosis tho).

sending good vibes!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/17/2010 5:28 PM (GMT -6)   
I am having the tube removed tonight, and then if everything continues to go well I will go home tomorrow.

My surgeon said he'll teach me how to put the tube back in just in case I need to, but as soon as I'm healed he's going to do another surgery (probably outpatient) to use some sort of mesh around my stoma so he can "tack" my nearby intestines to it.

He asked if I'd like to keep the tube in for a few days but I said no because I can't wear normal clothes with it. It kind of hurts because it sticks out and when things touch it, it hurts my stoma.It's really big--wider than like a pen. It would probably be safer to keep it in, but I guess I'm an idiot.

My dr keeps talking about how this is so unusual and I really wish my body would get the message and stop being weird.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/18/2010 5:58 PM (GMT -6)   

Hi Stephanie,

I'm so sorry this keeps happening to you.  If not adhesions, then I have heard of loops of intestine doubling up behind the stoma.  Sounds like your surgeon has a plan with the mesh.  Sure hope it works for you.  I am still, so far anyway, doing OK since my lysis of adhesions and ileostomy in 2007.  BUT I fill very fast.  Stool moves fine.  CT Enterography shows all open.  BUt I don't have a normal appetite at all.  Very little fills me.  BUT, as long as I'm not reobstructing, no complaints.

I wish you all the best at getting this straightened out.. Sorry you are missing your job that you love so much.  I bet the kids just love you.  Best wishes, Rosemary

 


ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 12/18/2010 11:14 PM (GMT -6)   
Hey 80's chick!

You are not sounding like the person I talked to at the Winter Park hospital back in November..and, you're not making me want to have surgery at all..just keep taking the Prednisone 'til my bones turn to mush...is that what you what to happen?! :)

A "mesh" sounds like a good thing to this engineer...keep everything "plastered" to where it's supposed to be....

Maybe you are doing too much swing dancing and twisting your small intestines around too much?

Also, if you are alone in the hospital again, give one of your Orlando ostomates a call...I thought that was what the group was for...if you think you're bored in the hospital alone..try talking to me! You'll wish you were alone again! HA!

Looks like you will be out for Christmas and New Years...

Hopefully will see you at the next meeting... tongue tongue

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 12/18/2010 11:18 PM (GMT -6)   
Oh,

about the laptop..if it was from work..it should have serial #, IP addres, etc. all on record..should be able to catch the @$@%@%! who took it...just notify your work and they should be able to find it if the @#$@#$ goes on-line.

:-)

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 12/21/2010 11:41 AM (GMT -6)   
just wondering how you are doing?
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/21/2010 3:08 PM (GMT -6)   
ENIGMAWRAP! You're here!
Don't use this as a reason not to have surgery. Even with all of these complications, I would still NEVER go back to the way things were before my surgery. I am thankful every day for surgery and also, I am a VERY exceptional case. Most people do NOT have these kind of complications. And thanks for your advice about the laptop! I will do that :)
 
I'm doing ok, everyone. Out of the hospital and now visiting my family. REady to schedule this last surgery and hopefully be fine!!
 
 
 
 

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 12/22/2010 3:03 PM (GMT -6)   
Stephanie,   OMG girl I am so sorry to hear that.  I know I always have a fear inside that something is going to go wrong.  I too have spent every month in the hospital since the Total Colectomy=with re-connected.  Had a dialation surgery 2 weeks ago from the 2 ends that shrunk down to the size of a pencil so they made it a quarter size, but guess that wont last long.  Hoping to hold off the other surgery till after Christmas, but if it shrinks back right away I cant control that and will end up in the hospital for the other surgery.
 
I know its probably killing you that you can't be with your students but I am sure they will understand.
I wish you the best of luck and prayers for you.
 
Leslie
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