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sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/22/2009 9:15 AM (GMT -6)   
I am here from the Crohn's board on the great advice of one of the Ohio's--thank you. After almost 25 years of no surgery and moderate crohn's, surgeon and GI are wanting to remove terminal ileum through rectum. It is quite a shock. 2 weeks ago, my GI and I decided to remove terminal ileum and some of right colon but the surgeon's further study of my films (although from 5/08) and my quality of life made him recommend that the whole shebang go. I didn't think I'd be considering an ostomy at 37 and with my history. But here I am. I am scheduled for surgery on 2/24 but hope to get 2 second opinions before that (1 GI and 1 surgeon). In the meantime, I run to the bathroom 25 times a day, leak stook from my r-v fistulas, can barely make it up the stairs----and pray I am making the right decision to take the whole colon and rectum away. And I've been researching like crazy. Thank you for being here. I need you all so much!

My first 2 ostomy board questions:

This one seems silly: I don't understand what will happen to my anus. Does it close up/no more use? What's going to be there? Now, I'm still hoping to consider a jpouch but it doesn't look too promising with all the fistula disease.

If I am taking a med or eat a food that would normally cause D, does the bag fill up really fast like D comes at me? How does one handle that?
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/22/2009 11:12 AM (GMT -6)   
Sammies,

Welcome to the ostomy board! I know that you probably would never have electively chosen to have an ostomy, but I would bet that once you are healed from surgery and recuperated, you will feel soooooo much better - just getting all that disease out of your body. It's been many years for me and I still wish that I would have agreed to have my perm ileostomy done much sooner than they had to. It will literally give you your life back. Having any kind of surgery is no picnic ... that's a given. BUT once it all heals, you will wish you had it done long before.

When I had my surgery done, they removed the rectum, what I had left of the colon after many resections to avoid having a perm ileo, and some of my small intestine as well. That was in 1984. They did sew my anus and it healed very well. Tender to sit for a little while, but it has no use now.

Re: "D"... it is an individual thing. Different foods affect different people. Since I had a portion of my small intestine removed, my transit time is fairly quick. I do take come imodium to slow the transit down. Not everyone has to do this tho. And, some foods that bother you now may never both you again. There may be some restrictions and then slowly "challenge" new foods in small portions. Most importantly, be sure to drink lots and lots of fluids. Folks with ileostomies can dehydrate easily if the transit time is fairly quick. Stands to reason that if you lose a lot of fluid via the ostomy, you need to increase your intake.

Best of luck to you and feel free to ask any and all questions. WE will help you thru this!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/22/2009 12:54 PM (GMT -6)   
sammies--glad to see you came over!! I'll ditto everything Peggy said and add that I had mine sewn closed during my proctocolectomy...it actually didn't bother me too much...my staples irritated me more!

As far as the D goes...it will just depend on you and your body!! I was lactose intolerant before, and although I eat all the dairy I want now, I know it could cause higher output.

Keep us posted on your progress with the second opinions...and continue to ask those questions!!!

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/22/2009 2:36 PM (GMT -6)   
I was just going to ask about lactose. I've been using the lactaid pills and sometimes they work and sometimes they don't. Glad to hear you are able to eat dairy. wow--I hope I can too.
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/22/2009 2:45 PM (GMT -6)   
I too eat lots of dairy products - cheeses, yogurt, cottage cheese, ice cream (in the summer), cream cheese (as in cheesecake!), whole milk.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 1/22/2009 5:10 PM (GMT -6)   
Hey! I know 37 sounds like too young to get an ostomy but I'm 17 and have one! I thought id be tough but its actually improved my life like a lot of other people on here :-) Its a scary thought but once the surgery pain went away, I have noooo pain! And now I can eat m fritos without them hurting me..and a lot of other food too! Eh..i stay away from dairy but only bc ppl said it produces gas. After a few months, it just became part of me..part of my life. I'm sure yours will be the same way too :-) Congrats and I wish you happiness and health in the future
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =]
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 1/22/2009 5:26 PM (GMT -6)   
Hi Sammies, I've had my ileostomy due to UC since I was 10 years old, so as Bella said, 37 isn't that young for an ostomy :)

Just be aware that you may not be eligible for a j pouch if you have Crohns. Some surgeons will consider it if your Crohns has been confined to your large intestine for at least the past 5 years but there are no guarantees. More than likely you will have an external pouch.
 
Your surgeon may or may not decide to remove your anus. To my way of thinking, if your ostomy is going to be permanent, then you might as well have your anus removed during the op since you're never going to use it again anyway. If it's left, you may still have problems with it secreting mucous, which it will do since that's it job, to help slide stool along, it just doesn't realise it doesn't have to do that anymore.  Some surgeons will sew it shut, others will leave it to heal shut from the inside out, it depends on the surgeon's way of doing things.

As for D, there will be no urgency. It will go into your bag and you just empty it when needed. No more running to the loo and hoping you make it on time :)

Good luck.


I have had an ileostomy for 33 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

Post Edited (Shaz032) : 1/22/2009 4:29:17 PM (GMT-7)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/22/2009 6:22 PM (GMT -6)   

Sammies,

Welcome! I also had Crohn's with r-v fistulas and think you would be very happy with the results if you had the whole shebang removed. I had it done in October 2006 at age 36, and it has been so wonderful to be done with the pain, the drainage, the meds, the doctor visits, the hospital stays, and the urge to go 20+ times a day! I am completely healthy now and wish I would have done it years earlier.

If you had your rectum removed, your butt would look the same, except you wouldn't have a hole back there anymore. You wouldn't need it, since you'd have an ileostomy, which, in my honest opinion, is not a big deal. It's soooo much better than being sick. 

Please ask us any questions you have. We're here for you!

:-)  Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

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