So tired of living with the day to day life on and of the can?

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onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/9/2009 9:48 AM (GMT -7)   
redface  So here is my story i have been having repeated bowel obstuctions now for 7 years and i am at the point now that there is nothing they can do for me i dont have enough bowel left for an ostomy or another resection for that matter i am left with 11 feet of diseased bowel so now ever time i go to the hospital i get the same response there is nothing we can do for you Jenn and that is really scary i dont know what to do any more,everything seems to be going bad nothing i try ever works but the doctors are saying that if i come in the hospital once a month and not wait to long before it gets to bad were i need a NG tube put down i just dont want to bother them with this i know all the nurses on all the floors some are great and some i had for years but some i have dont want you there and they show it and i dont even bother to ring for help cause sometimes i can wait 3 hours for something for pain when i am home i can get my own pain meds but of coarse the needles work alot better and there quicker for sure but they make me feel like i am putting them out so i say nothing and lay there in pain waiting for the next time,right now i am having a bowel obstruction every month now.ANY INFO WOULD HELP THANKS. YOUR BOWEL BUDDY JENN yeah .
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/9/2009 10:09 AM (GMT -7)   
I don't know where you're from, but you might want to look into the Mayo Clinic or the Cleveland Clinic- a couple of the best places to go for Crohn's and UC. They may be able to give you more options for your specific situation. Good luck!!
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 4/9/2009 10:48 AM (GMT -7)   
onthecan; Jenn

I am sorry that you are having to experience all this horrible stuff

I think it's time to find some better doctors. I think you are a special case, and you need some of the brightest minds out there to come up with some fresh new ideas for you. smilewinkgrin

As Britt suggested, the mayo clinic, can proably help out.

www.mayoclinic.com

I should keep quiet, but I can't.

I think you would really benefit from an antidepressant. I know while I am on Celexa the sky can be falling on my head, and it's sorta ok with me. It's very hard to get me down while on this stuff, and I am so very grateful for it.
CD dx @ 13 (1987)
Prednisone 10mg every other day
Phenergen PRN
Zantac 300 - Twice Day
Pain Meds
Vitamins


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/9/2009 11:30 AM (GMT -7)   
yeah  HomeBoy said...
onthecan; Jenn

I am sorry that you are having to experience all this horrible stuff

I think it's time to find some better doctors. I think you are a special case, and you need some of the brightest minds out there to come up with some fresh new ideas for you. smilewinkgrin

As Britt suggested, the mayo clinic, can proably help out.

www.mayoclinic.com

I should keep quiet, but I can't.

I think you would really benefit from an antidepressant. I know while I am on Celexa the sky can be falling on my head, and it's sorta ok with me. It's very hard to get me down while on this stuff, and I am so very grateful for it.

Hey homeboy thanks i do live in a very small town with very little resoures around here and hospitals well there small to i live in tiny town were we once had a VETERNARIAN yes your reading that right and he was one of the best doctors we had he was always booked up until word got out that he fixes cats and dogs his reply before he was removed from the board was they have the same parts as people do so here were i live you can only immagine what kind of doctors we have here there not great but there all we have there is a hospital about 2 hours from here and that is were my GI doctor is but its so hard to get into see her and thanks for the suggesion on nerve pills i could really benifit from them i must soon like a crazy person sorrry and thanks so much.Your bowel buddy Jenn yeah .

i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/9/2009 11:40 AM (GMT -7)   
britt1449 said...
I don't know where you're from, but you might want to look into the Mayo Clinic or the Cleveland Clinic- a couple of the best places to go for Crohn's and UC. They may be able to give you more options for your specific situation. Good luck!!

tongue Hey Britt thanks for the response honyes i am sure that any hospital could do much better than mine could this clinic your talking about have you heard alot of good things about it or have you been in there yourself,i am sure i could raise the funds to go people do it all the time around here,we are collecting money for a 9 month old baby who is going to China for stem cell transplant because he is blind and the treatment will help they raised 65 thousand already so i helped out alot with numerous fund rasises for different illness maybe its my time i want my life back is that to much to ask we were dealt a bad deal i accept that its the never going change i cant accept there is nothing we can do for ya that is my problem can anyone grab me and pull me out of this steaming train before it crashes or is this a coaster ride from hell cause i think i missed my stop.Thanks for your response Britt ttyl.Your bowel buddy Jenn. rolleyes
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/9/2009 12:05 PM (GMT -7)   
Hey Jenn,

I am wondering what types of foods you are eating. The reason I ask is because I kept having obstructive episodes and what helped me was to go on a low residue diet and to stop eating red meat completely. Since I have done that, I have not had anymore of the obstructive episodes. Just a thought!!

And I agree you need to find new doctors, no one should have to suffer as you are.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/9/2009 1:13 PM (GMT -7)   
Hi Nanners thanks for your reply my diet consists of 2 things really yougrat lots of it i dont eat meat only fish and chicken and almost everything i make is home made so i dont eat out alot at all i consider myself to be a good cook people are around my dinner table every night and i love that i just wish i could eat what i make i also eat alot of pita bread and if i do eat meat its fresh from the farm i dont buy anything from the grocery stores i also eat moose meat and deer meat it dont bother me as much as red meats do but as soon as i eat red meat (cow) i get bad (DIA) and cramps so bad i cant move gravy kills me to i cant eat any fruit or most vegtables only if there baked so i guess i am on a resricted diet when i am in the hospital i am on low carb diet low sodium diet i try to watch my calories i have been going to the gym to keep my body stong and it helps the fibro and the arthritis so much the aqua-fit-class is so low impack on your joints it dont hurt at all so that is when i have a good day i am at the gym i haven been since over a month cause i was sick i guess that is no excuse but its mine anyway.So what do ya do for fun nanners?There is not a whole lot to do here in this town i live in but we have alot of bars and pubs ETC so if your not a drinker there is the drive in movie were the only ones around here who still have one its nice in the summer sitting in the car with the AC on and relaxing laying back watching a movie that has more than likely been out in the US since last June but we think its great!!!!!Tommorrow i am going to try out our local vets offices to see if i can find myself a new doctor ha ha lol. Thanks Nanners talk to ya soon.Your bowel Buddy Jenn.
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 3:38 PM (GMT -7)   
Jenn, Nanners is not criticising the healthiness of your diet; she is suggesting a low residue diet because it may put less pressure on the small amount of bowel you have left, and may be less likely to cause obstructions.
Co-Moderator Crohn's Forum.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/9/2009 3:46 PM (GMT -7)   
Hi Jenn Are you taking B-12 and a good vitamin ...how about ensure or boost ... what are you doing for meds have you tried Remicade or Humira.. what is causing the obstructions ? I pretty much go low roughage and it has made a big difference .I have been on it for 2 years now and I stay away from seeds and other things that used to give me a go for it... glad you joined us.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/9/2009 6:35 PM (GMT -7)   
Hi Jenn,

I have relatives all over NS and have been through the area where you are. I guess Halifax is about an hour and a half away (closer than Moncton). Have you ever used doctors in Halifax?

Take care!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/10/2009 11:40 AM (GMT -7)   
yeah  Hi Nanners i wasnt tring to be rude i hope you dont think i was i love hearing any advise so i can try anything new and again i am so sooorrrrrryyyy if you thought i was being mean i feel so bad nanners.Thanks your bowel buddy Jenn. smurf
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion

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