Nanners & others: you were right (unfortunately)

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uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 8/1/2009 5:42 AM (GMT -7)   
I've just had a 5 day stay in hospital - got really bad abdo cramps on Sunday and felt sick (later vomited over doctor when he prodded and several episodes through the night!!). hoped it was a bug or food poisoning or mechanical obstruction (partial) but thought I'd do the sensible thing anyway and get it checked out instead of waiting to see GP during the week. The magic word Crohns meant all docs (I thought) overreacted and wanted me to stay in for tests............yep, colonoscopy showed I've got it back at the original site. So much for surgery helping induce remission for a while; I'd even made an appt to get Pentasa prescribed instead of waiting for scope in September. Doc says now not really any choice but to look at big meds cos it's come back so soon- suggesting Imuran and /or Remicade because any more surgery will mean TPN but will talk though it at clinic. on 2400mg Asacol for now.
 
as you can imagine I'm pretty low and scared. The thing that's most scary is that I didn't have any symptoms before this that I could put down to inflammation at that site - I've had gas and pains that I have thought food-related/getting used to what I can eat again after resection and some C/sluggishness but not constantly. If I hadn't gone to the hospital it probably would have eased - I'd have thought partial/mechanical obstruction, looked more closely at diet and been none the wiser poss until scope in September or even later. Anyone had this lack of obvious symptoms also? doctors say trust them to do regular tests, prescribe the meds I need and I've just to lead a 'normal' life/eat what I want - it's not in my nature but perhaps I should just let go; being 'me' obviously isn't good for my health 
 
Oh....and family were useless again in getting me what I needed but friends were amazing again.
 
Penny x
diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........
 
Penny x


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/1/2009 6:56 AM (GMT -7)   
Oh dear Penny, this is one time I wish I wasn't right. Hopefully though the medications will help to get you back to feeling good. I think I have something going on myself as I have had an increase in gas/bloating that has gotten really uncomfortable. I am being stubborn though and going to try a few other things first, if they don't work then I will go for different meds.

So sorry you couldn't count on your family, but thank goodness you have good friends.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and 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"*

RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 8/1/2009 3:41 PM (GMT -7)   
Penny, I swear by my Cade. I know I would not be in as good condition if it was not for that drug. I also take Imuran, but quality of life is what I shoot for.

Sorry to hear it was such a tough time for you. Stay strong. Learn lots so you can control your life.
Red (Lee Ann)
    "No passion so effectually robs the mind of all its powers of acting and reasoning as fear." - Edmund Burke


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/1/2009 8:49 PM (GMT -7)   
Sorry for the bad news. From my reading, it seems that about 75% of resections show recurrence of some kind within three months of the operation. That is for patients with no maintenance meds. Pentasa, or better sulphasalazine are pretty good at maintaining remission after surgery.

Edit: Pretty good means here about a 20% reduction in recurrence rate.

Post Edited (Keeper) : 8/1/2009 11:49:58 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/2/2009 7:21 AM (GMT -7)   
Well I have been successfully maintained with just Asacol for about 5+ years, so I think I beat the 20%, JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and 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"*

uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 8/2/2009 8:33 AM (GMT -7)   
Thanks guys - having a hard time with this at the moment. My reading says poss remission for 7-9 years after surgery so I though 2 months without meds would be ok. Impossible to tell whether it started straight after op or in the last week.
 
I am just going to have to go with what the doctors tell me but I'm still struggling with the 'how will I know it's working?' question when I haven't had major symptoms. I know they test bloods etc if you go on any meds but after 2,3,4 plus years it will be no doubt annual check ups and I wouldn't know if the drugs were effective or placebo for the disease but may have to live with side effects that affect my daily life.
 
I'm saying I'll take the meds since I know I've got it back and it's obviously an aggressive disease but doesn't have to mean I'm happy or a door mat to medics who work on algorithms for what treatment I should get (3 doctors last week said to eat what I want and have a normal life - not even pretending to care about me as an individual whose life has just been majorly affected)
 
cry  
diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........
 
Penny x


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/2/2009 1:06 PM (GMT -7)   
I should qualify my last post. The recurrence rate of 75% was for microscopic changes to the gut. The actual rate of symptomatic relapse was much less - about 10% at three months. At one year, symptomatic relapse was still only about 20-25%. The message here is that the disease is not usually "cured" by surgery and measures to control inflammation are a good idea. Unfortunately, the usual maintenance meds are not 100% effective. Just have to keep watching yourself.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/2/2009 3:07 PM (GMT -7)   
I had some symptoms after each of my resections, once within weeks. I think the doctors are so concerned about leaving as much bowel as possible to avoid short bowel syndrome that they end up leaving some microscopic disease in a lot of cases. Like Nanners I am a huge fan of always being on a maintenance drug, or two, or three, whatever it takes to keep things under control. Once I was put on maintenance drugs that worked for me, I was able to stop having resections and avoid the hospital for years at a time. Woo Hoo!!
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.....

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