Surgery if done as is my bowel now I got SBS and I'm going 2 the bathroom like crazy any advice?????

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onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/30/2010 6:08 PM (GMT -7)   
cry  Hi all u cronies out there I'm gonna make this short and sweet if I can,I suffered repeated bowel obstructions since last summer U know the drill the dreaded NG tube 2 drain the belly so u don't throw up stool now there is 3 words I never thought I have in my vocab,I went in my local hospital in September nothing by mouth sips of water,than my port was excess ed and the gripper was 2 big she tried 2 force it cause she was in a hurry and with in a half an hour I had severe pains in my chest I thought @ first it must b muscular and tried heat and ice than the EKG'S started and showed a rapid heartbeat but we have no doctors that specialise in this in my small hospital by morning they changed the gripper and my neck was swollen so bad it was the size of my head,,,So an alarm went of Cat-Scan and Ultra Sounds on the veins in my neck which showed I got a blood clot in my jugular vein from having the port accessed than I go 2 the OR have the port removed and a 3 line central put in good right no the next day the surgeon came in and said we have 2 go back 2 the OR tonight I'm 100% sure u have the flesh eating disease in your chest and neck and u could wake up with a huge hole in your neck,but it turned out Ok I was in ICU 4 about a week 2 monitor my heparin drip....                                           The following day the ambulance showed up 2 transfer me 2 the city cause they found a surgeon that would operate on people like me with so little bowel left,so me thinking I've been in the town hospital now 4 about 7 weeks hopefully this surgery will b done soon,,the doc comes in says u r so undernourished u need TPN 4 at least 8 weeks before I can operate u just are not strong enough yet so days turned into weeks and months into years lol,,,Finally I'm booked and marked 4 a ostomy if the bowel was 2 weak 2 put back together,,the surgery was 9 and a half hours long and I had a double bowel resection and a triple hernia repair way 2 much 4 someone who is weak already and weighs 98 pounds wet lol....I was in ICU again and scared but pain management was there and they finally got my pain under control,,So I'm home a week and 2 days my belly fell apart night one with a really bad infection than the family doc doesn't bother calling me on Mon,Thurs cause that is when I go in 2 get my INR checked 2 c how much war fin I need 2 take its getting really hard on my head I cry all the time and 2 top things of I gotta have another Stress Test cause of the pain I have in my chest on a daily basis I'm so scared and 36,,,One more thing sorry 4 such a long boring post....I'm having such a hard time eating now small meals but the heart burn is insane so I'm living of ensure and flat bread....Did anyone have this type of surgery done were this is the last time and end up with SBS????Any advise would be very appreciated....Thanks 4 reading this loonngggggg pppooooossssstttt sssssoooorrrrrrrrryyyyyyyyyyyyy....Onthecan (AKA Jenn)

Post Edited By Moderator (Nanners) : 5/4/2010 7:39:14 AM (GMT-6)


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 4/30/2010 7:50 PM (GMT -7)   
yep... i had a clot inmy jugular 1 year ago because of my Hickman replacement went bad. soi know exactly how you feel.. how much bowel do you have left? i ask because if you have very little like me (about 2.5 feet) you cant absorb the warfarin enough . you dr should have discussed this possibility.. thats why i had to take heparin shots for 6 months.. and the clot is still there. and just wondering, should you be on 4 or 5 depression- anxiety drugs? thats gotts be messing you up.
randynoguts 



     http://www.geocities.com/randynogutsweb/


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/1/2010 2:44 PM (GMT -7)   
I have SBS,

One word, Cholysteramine. Fill a nice sized coffee mug with water, pour in the Choly, let sit for 4 minutes and chug.

You'll be outta da can in 20 minutes, and then you can go out for the day :)
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/3/2010 6:53 PM (GMT -7)   
randynoguts said...
yep... i had a clot inmy jugular 1 year ago because of my Hickman replacement went bad. soi know exactly how you feel.. how much bowel do you have left? i ask because if you have very little like me (about 2.5 feet) you cant absorb the warfarin enough . you dr should have discussed this possibility.. thats why i had to take heparin shots for 6 months.. and the clot is still there. and just wondering, should you be on 4 or 5 depression- anxiety drugs? thats gotts be messing you up.

Thanks 4 responding Randy but I just got back out of the hospital again I have been getting the hep shots fro 6 months now and blood drawn twice a week.. Right now after a double bowel resection and a triple hernia repair I got the grand total of6 and a half feet left I get everything I need in medical day minerals and vitiams cause I don't absorb anything anymore that takes up 2 more days a week...As 4 the depression I take these 4 my fibro...So Sorry 4 posting a old post....Thanks again yeah andy...

Post Edited By Moderator (Nanners) : 5/4/2010 7:38:57 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/4/2010 6:41 AM (GMT -7)   
Jen,

Sorry for all you are going thru. I sure hope that you get feeling better soon.

On a side note, could you please go in and edit your signature. Your signature is causing all the posts you respond on to go wide and it throws the forum off. Thanks for your understanding.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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