Elective Resection and Strictureplasty

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Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 12/17/2009 12:53 PM (GMT -7)   
I was recently hospitalized with a small bowel perforation.  I have actually been kicking and screaming for surgery for almost a year because I feel that my strictures have grown unmanageable and they haven't responded to steroids -- they suddenly just stopped responding.  My own personal hypothesis is that my stricutres are caused mostly by scar tissue, but I am awaiting an MRI to confirm this hypothesis (I am literally in the waiting room right now as I write this.)
 
I just saw my surgeon and he seems very reluctant to commit to surgery.  He wants to analyze the results of my MRI and says that surgery may not be needed at all.  Part of his reluctance comes from the fact that Crohn's can recur, even after a resection.  He is a great doctor, but is being far too conservative in my opinion, and I am frustrated with the doctor's reluctance to commit to a specific plan of action.  Meanwhile I am stuck on an all liquids (SCD-compliant no less) diet until they decide what to do, which could be 4 or 5 more weeks.
 
Has anyone been in a situation like this?  I have never had surgery before and am by no means looking forward to it, but I also know my own body and know that it is most likely needed.  What does one need to do to convince the docs?  Should I just keep shopping around until I find a good doc who is willing to do the surgery?

+ 34 year old male
+ Crohn's Disease DX in 1997
+ Recently hospitalized because of ruptured small bowel; docs got it under control but have scheduled resection surgery for January 2010.
+ Taking Cipro (1000mg / day), Flagyl (1500mg / day), and Entocort (9mg / day) until surgery
+ SCD for past 10 years


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 12/17/2009 1:16 PM (GMT -7)   
I'm in a similar situation. Had a CT a few days ago, waiting to hear from my doctor (he called when I was at work). I haven't eaten much aside from jello and soup in the last 3 weeks, lost a bunch of weight, and so forth. I guess what I'd do is ask your doc to see what the other GIs in the hospital have to say about your situation, or get a 2nd opinion altogether.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 12/17/2009 2:57 PM (GMT -7)   
I'd get another opinion from a colon-rectal surgeon. How did you escape surgery with a small bowel perforation? I thought emergency surgery was needed in that situation. I didn't know an MRI could confirm scar tissue. Wouldn't you need TPN if you had to be on liquids for 5 weeks? Are there insurance issues? Good luck and keep us posted.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Ileocolectomy 4/08. Back on Pentasa as maintenance.


camjames
Regular Member


Date Joined May 2006
Total Posts : 229
   Posted 12/17/2009 8:43 PM (GMT -7)   
I think I am sort of headed down a similar path as you guys. I feel I have a pretty resistant narrowing in my ileum, but sometimes it feels less symptomatic, then it never seems to show up too strongly on Barium x-rays etc.  Just a quick question to Carnival Huckster: what do you eat/drink for a liquid SCD diet?
Current Meds: Remicade 4 bottles every 2 months, Entocort 9mg daily, Methotrexate 15mg SC weekly


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 12/17/2009 9:34 PM (GMT -7)   
The liquid SCD diet is a major pain, much like the regular liquid diet. I make almond and coconut milk by blending almonds or coconut in spring water and then passing it through a cheese cloth or coffee filter to remove the residue. You can then use the milk as a base for making smoothies. You can also use the SCD yogurt for smoothies as well and add a bit of SCD peanut butter for extra protein. I use fresh blueberries and banana and just liquify the whole thing -- it really isn't too difficult.

I escaped surgery because the perforation healed itself, but there is a small abscess there now. My surgeon is being so incredibly stupid about not wanting to do the surgery, but the area right before my stricture in the small bowel is distended to a width of 7cm and the stricture itself is just 5mm wide. I just emailed my GI doc to ask if there is another surgeon who can do it, but the surgeon I have now is supposed to be very good with small bowel Crohn's. I am so pissed at the surgeon and if something happens while I am waiting for him to make up his mind I am going to be absolutely furious.

+ 34 year old male
+ Crohn's Disease DX in 1997
+ Recently hospitalized because of ruptured small bowel; docs got it under control but have scheduled resection surgery for January 2010.
+ Taking Cipro (1000mg / day), Flagyl (1500mg / day), and Entocort (9mg / day) until surgery
+ SCD for past 10 years


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/18/2009 5:33 AM (GMT -7)   
My opinion is that I had a CT scan in Sept and I was told everything looked great. I just had a scope on Wed. and guess what? My Crohns is back 10 months after sugery!!!!
I would ask to have a SBFT along with a live x-ray. They can measure your strictures diameters that way. I think it is more accurate then a CT.
As for sugery, it wasn't that bad, just a little bummed that it's back this soon..

Good luck and I hope you find relief soon!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 12/18/2009 12:29 PM (GMT -7)   
The name of my colo-rectal surgeon is below. I had my stricture removed last month. I lived with that thing for some 8 or so years, and enough was enough. I dunno if you are willing to come to memphis, tn, but if so...

I didn't have to beg, or whine, I just told him how much it was bothering me, and he told me all the risks of surgery. I was in the hospital 5 days.

Doctor Alexander Matthew
Suite 120
1910 Nonconnah Boulevard, Memphis, TN 38132
(901) 448-2300
Humira 2 times a month, Lialda 2 X day, Phenergen PRN, Remeron 30mg day, Pain Meds, Zantac 300mg 2 X day, Prednisone 20mg Every Other Day, Vitamins;
semi@jengland.info -- FaceBook


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/18/2009 2:10 PM (GMT -7)   
It's my understanding that when undergoing a small bowel strictureplasty (and only a strictureplasty) it's actually uncommon for crohn's to recurr at that site. Strange, but that's what I've read. I think someone just posted a link about it here a short while ago.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 12/18/2009 9:49 PM (GMT -7)   
Wolfie -- what maintenance meds did you use after surgery? Asacol? I already had the SBFT before the MRI and the worst stricture was 5mm in diameter.

Homeboy -- thank you for the recommendation. Did your doctor do a laporoscopy or laparotomy (full open surgery)?

Rider -- I hope you are right about that. I also hope that I am a good candidate for strictureplasty, otherwise I could lose 2 or 3 ft of small bowel.

+ 34 year old male
+ Crohn's Disease DX in 1997
+ Recently hospitalized because of ruptured small bowel; docs got it under control but have scheduled resection surgery for January 2010.
+ Taking Cipro (1000mg / day), Flagyl (1500mg / day), and Entocort (9mg / day) until surgery
+ SCD for past 10 years


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 12/18/2009 9:52 PM (GMT -7)   
ski bum -- insurance is ok for the surgery itself and hospitalization, but I just maxed out the medication part (thank you Entocort) so I am going to be getting my meds from Canada right now (they are about 1/4 the price as the same meds here in the U.S.)

+ 34 year old male
+ Crohn's Disease DX in 1997
+ Recently hospitalized because of ruptured small bowel; docs got it under control but have scheduled resection surgery for January 2010.
+ Taking Cipro (1000mg / day), Flagyl (1500mg / day), and Entocort (9mg / day) until surgery
+ SCD for past 10 years

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