When is the right time for Surgery

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spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 10/6/2008 12:53 PM (GMT -7)   
Hi , Been living with Crohns for the last 17 years.  My main problem with the illness is Obstructions, I suppose I've had around 15 partial obstructions which have resulted in me being in so much agony for around 6 hours. Many times I'm also Sick. Eventually it passes and im back to feeling completely normal.
 
However since my last obstruction in March which resulted me spending 7 days in hospital something is so different and I'm confused why.... When I was admitted I was given morphine and put on a steroid drip and placed on a course of Prednisolone - 60mg tapering 5mg every week. But after a few weeks I noticed that I had this horrible distended - bloated - hard feeling all over my stomach which wouldn't go away... Since March I've been up and down on my steroids and have risen my Imuran dose from 100mg to 150mg and now since the beginning of August to a whopping 200mg!!  I also have been taking the whole time 3000mg Pentasa. My blood tests show No signs of inflamation.  Could this mean its time for surgery to remove my stricture, did anybody have the same symtoms before surgery? Having this really uncomfortable feeling for 7 months have really got me down. I'm seeing my consultant again in 4 weeks time but I don't just want him to send me away again for another 2 months feeling like this. Does anybody have any idea what tests I could have done to confirm now is the time for surgery...  All I would like is to spend more than 30mins not thinking about my belly and the pain the whole time...
 
Thank you for anybody who replies.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/6/2008 3:08 PM (GMT -7)   
Hi Ct might help comfirm what is going on I had a simple abdominal X-ray which showed some problems. What is your Dr. saying about it all? lol gali
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 10/6/2008 7:28 PM (GMT -7)   
Hi Spiceman:

It sounds to me like your stricture is starting to close and you are heading for surgery. You need a colonoscopy and/or a CT enteroklysis to evaluate whether your stricture is limited to one segment of bowel. If it is and if you aren't responding to steroids and imuran then you have probably run out of medical options and it is time for a surgical consult.
Belleenstein:

30+ years living with Crohn's.


chewbacchi
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 10/6/2008 8:24 PM (GMT -7)   
I had almost the same experience, and I blame the hospital and the drugs I was given. I am so pissed it's worse now, because I was "cared for" by a hospital. I have had blockages before I knew I had Crohn's, i would be in pain for 12 hours then back to normal for 10 months. But now once I go into the hospital I have a constant lower abdomen aching after peeing and BMs. Not a lot of pain, but annoying.
I am seriously going to talk to a lawyer and take the hospital for screwing me up. Not to mention, my veins are hardened where they put the IV in. Serious malpractice suit going on here. I am so pissed.
My advice, heal yourself with as little Dr and hospital involvement as possible. You'll live longer.

-Marc

spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 10/6/2008 10:04 PM (GMT -7)   
Hi Gail. My GI doctor has told me that I've done very well with the illness so far. Meaning I've had no operations since I was Dx when I was 18, now im 36. He also said that 80% of Crohns patients will oneday have a operation at somestage of their lifes.. He refered me to see him again in 8 weeks time and if things have not imroved he will consider a small bowel follow through. He aslo said that staying given up from smoking is better than any drug he could give me. He also refered me to a dietitian so I could follow a low fibre low residue diet.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/6/2008 10:20 PM (GMT -7)   
Personally I think the right time for surgery is when you can no longer take it anymore and things don't seem as if they have a great chance of improving from here on out...having so many issues with blockages like you do will likely make it harder for your CD to improve...surgery is serious but so is constantly living with blockages...I don't blame you for opting for surgery, it doesn't seem like you have much of a choice...maybe see about them putting a bag on temporarily so it can be reversed down the road...that is if having the blockaging areas removed isn't a viable option.

Good luck, thoughts are with you :)
My bum is broken....there's a big crack down the middle of it! LOL :)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 5:31 AM (GMT -7)   
Hi Yes I was told that quitting smoking can be the best thing for CD I know the low residue helps and especially if your blocking. Hope things get better soon for me I just couldn"t go on the way I was and it needed to be done promt toe. Will be keeping a eye out to see how you do . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/7/2008 6:36 AM (GMT -7)   
My best suggestion on when the best time for surgery is................when your "quality of life" has gotten so rotten and no meds are working, then it is time to give in to the surgery.  That was what helped me make the decision for surgery #2, my quality of life basically sucked. 

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


angela42
Regular Member


Date Joined Dec 2005
Total Posts : 30
   Posted 10/7/2008 8:39 AM (GMT -7)   
I had a bowel resection when I was 17 and about ten years later I started have similar symptoms....partial obstructions and on two exceedingly painful times, full obstructions. My Crohn's wasn't causing an issue, I had an anastomosis at the resection site that was causing the obstructions.

Like a previous poster mentioned, my quality of life started to wane. I was always worried about an obstruction, the run to the ER (where one must convince the triage nurse that this is not gas pain, not a "tummy ache", and I need pain meds NOW).

I had a plumbing problem. No amount of meds was going to make that stricture go away...it'd needed to be removed.
Angela
Diagnosed at 13, am now 38. Bowel resection at 17 and two additional surgeries following bowel obstructions.  Weekly shot of Humira.
Gave birth to a beautiful baby boy on 9-21-2005 after being on Remicade.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 11:55 AM (GMT -7)   
Hi Nanners said it, the problem with me was life sucked but I wouldn't live up to it. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/7/2008 1:11 PM (GMT -7)   
I am sure I've had at least partial obstructions. My problem is that I will not go to the ER until I just can't ebar the pain anymore. That is usually 2-3 days of agony. I am perhaps too stubborn. But, after living with this for 30 yrs, I can usually tell if it'll come about by itself. My blood doesn't show inflammation either. I have been on my dr for 3 yrs now. He kept telling me the sed rate doesn't shwo inflammation, so go home and bascially deal with it. Finally time came for a sbft. He told me my stricture has become smaller than a very thin pen, and I ahve deep inflammation in it. This inflammation does not show in the sed rate.

Do not let him blow you off! Insist on a sbft and/or colonoscopy. This is your body! You live in it. My belly swells badly. I gurgle alot. I am so limited on what I eat it isn't funny, and almost anything can send me reeling in pain. I am having surgery. Plus the surgeon just told me I have 2 strictures. My GI lead me to believe I had 1.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong

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