surgery options

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meshice
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Date Joined Jan 2003
Total Posts : 734
   Posted 11/10/2008 5:43 PM (GMT -7)   
Hi all!  I am from the Crohn's Disease board.  My mom and I both have CD.  I posted this on the CD board too, but thought you might have some ideas too.
 
My mom has a stricture at her rectum that has created a lot of scar tissue.  This causes her to have very loose urgent stools about 20 times a day.  Sometimes she goes before she even knows she needs to go.  She is somewhat confined to the house because of this and wearing diapers.  Immodium doesn't work.  The doctors say the loose stool is her body's way of getting rid of the stooll.  Firm stool would not pass because her rectum is so small (problem # 1).  They have dialated her rectum to make it larger and this has cut down the bathroom trips to 15 a day.  Problem # 2 is a fistula between the ileum and the colon.  She has talked with the surgeon & GI. 
Here are the options they give:
1 - Do nothing becasue she is not "sick" - but live with frequent trips to the bathroom and don't really leave the house because of the bathroom trips.  Wait for the fistula to cause a problem and then fix it.
2 - Fix the fistula now with a bowel rescection.  In the future severe constipation could cause this area to rupture becasue the the rectum is so small.  This still doesn't solve the running to the bathroom problem becasue of the small rectum.
3 - Have an bowel resection with a permanent Ileostomy.
 
So, questions are - 
Anyone had this before and what did you do?
What's the difference in Ileostomy and a Colostomy? 
Is there an alternative that is not as extreme as a bag? 
For those with bags - What is life really like?  Was your bag by choice or a "have to" surgery?
 
Thanks!

"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/10/2008 9:09 PM (GMT -7)   
i don't know anything abotu the first two options i have a perm ileo.
The diff between a colostomy and ileostomy (i had a hard time grasping this, lol) is that a colostomy leaves part of your large intestine so you have formed stool, usually two or three times a day, and some people are able to irrigatewhere they dont'have to go for 48 hours. They still wear a bag andall.For someone with CD i dont' think they would do this, cause it would still leave a part that has CD.
An ileo iswhere they take all the large intestine out andthey pull part of your small intestine out of your side. Since your large intestine is what soaks up most of the water, you have watery type stool all the time and it works like 92 percent of the time, so you are always going. It sounds gross, but it really isn't i am actually much more grossed out by this stupid wart on my finger than by my bag!
I don'tknow what kind of options she has, cause i dont know anything about her problem with her rectum.
I have a bag, My surgery was techinically by choice i wasn't gonna die or anything, but I was really sick with UC and i made the decision to get rid of the colon that obviously didnt' want to be there anyway! it wasn't doign me any good, lol.
Life is very good. No worryign abotu where the bathroom is, no horrible pains, no meds (now since she has CD she may have to take meds for that still, since surgery doesnt' cure CD completlyalthough there are lots of people on here who have CD but are med free)
So anyway basically, the bag is just there, after a while i pretty much forget it is there, it doesnt' keep you from doing anything, noone can see it,it doesn't smell or anything. It's not annoying, it's just different at first. There are downfalls, like you have to carry a small pouch with a bag change with you when yougo places, very small annoyance though. And it takes a little while to get used to. But there is no sitting in the batrhoom for hours like before, You just go in, empty the bag and leave, about five minutes tops. You change it once or twice a week at first that will take a while, i have had mine for about a year and a half now, takes me 8 minutes to change it now.
If you want to see some pics of people with them, to see tat youcan't tell look at the photobucket page,it's crohnsdisease for theuser name, 6mp3asa for the password.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 11/11/2008 4:27 AM (GMT -7)   

I really don't think that waiting it out is a good option; stuck at home because of the need to use the toilet is considered a low qualilty of life.  Surgery for IBD should always be considered if the patient's quality of life is at stake. Fistulas are very difficult to repair as noted and like you said the chance is good with that choice that more surgery might be in her future.  I cannot make her decision on which surgery to pursue but if it were me I would choose the path that gave me the highest quality of life.

I also recommend that you get a surgical opinion from a top CR surgeon who is very familiar with IBD.  Most are in large metro areas.  This is not a decision I would make with a small city or small town surgeon.  Just my opinion.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/11/2008 4:44 AM (GMT -7)   
I, too, have Crohns and chose to have a proctocolectomy in February 2008...It wasn't my first dealings with an ileo...I've had one for more then 8 years and knew how great life was with one!!! With Crohn's there aren't many options since the disease isn't "removed" by surgery like UC but your doc can give you suggestions based on your body. My decision for the "major" surgery was partly because I had many perianal fistulas that just continued to get worse (even tho I had an ileo) and the ever lurking cancer threat. Now, I am med free, and will only have to use any drugs if I start to have problems with my small intestine down the road. Quality of life is important to me and I am an active person.

I know the decision was right FOR ME...each person has to understand the pros/cons and this is a great place to learn about them...the older posts hold tons of knowledge! Definately go to a major hospital, since the more familiar the surgeon is, the more successful the procedure will be.

MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 11/11/2008 8:45 AM (GMT -7)   
1 - Do nothing becasue she is not "sick":
Doing nothing is a mistake as fistulas are relentless and will continue to cause problem and possibly multiply.
I had 5 perianal fistula surgery in 3 months in 1997 my surgeon said he could not operate around the sphincter mussel any more as I would loose any and all control with it.
I had to go in a ileo to heal up the perianal fistulas (dry them out) has your moms fistula punch through the skin? all 5 of mine did and I couldn't bare the pain.
I had no choice and had to give in to the bag and like others I was free of all pain and meds for 11yrs, now I am reversed as of 3 1/2 weeks but I went in to this reversal with knowledge and reserch and counciling with my Doctor (Dr.Theodore Bayless; Google him) he spoke with me about new medication that has come about in the past 10yrs and he placed me on Humira a medication that has seen success in controlling the fistulas and keeping them dorment he told me 3 out of 5 people respond well to this treatment.
I also had/have stricture mostly due to the operations of the fistulas and not being used for 11yrs but in March my surgeon did a colonoscopy and did a dilation test on the stricture to make sure the mussel could expand and also to check on the fistulas as far as activity...they never are gone only dormant and she said she could see some tissue area of the fistulas and were not active. Dr.Bayless plan was to treat my body with a 4-2-1 saturation treat ment before my reversal to keep the fistulas dormant.

2 - Fix the fistula now with a bowel resection.
Not that I am a expert but Humira might be a better option have you mom talk to her Dr, surgery on fistulas are alway difficult and your mom's is in a different place then mine were. again ask the Dr and try meds before a operation.

3 - Have a bowel resection with a permanent Ileostomy.
This is alway a last option one that your mom will have to come to terms with and one that her Dr would advocate if they see no other alternative's such as meds.
Being in a ileo was a stigma for me about the first few months but I was normal and health for 11yrs it's not a thing of shame but I did have a hang up swimming in public
pools but that was just me also the ocastional accidents do happen in bed at work ect. but you learn to over come them. I can't tell you how many times I woke up to one and had to jump in the shower at 2am to clean up.

Good luck to your mom and hope I was able to give some insite.

Post Edited (MDdave) : 11/11/2008 8:49:56 AM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/11/2008 9:21 AM (GMT -7)   
swimming was kind of a thing for me at first, but it didn't take long to get over it! i just wore one of those two piece tankinis and pinned them together, which i did before hand anyway, (now why didn't i just wear a one piece? cause it's much easier to take off a pin than to take off a whole suit to go pee!)
i even went swimming topless (well i had on my bra) with a bunch of people and nooone knew!

meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 11/12/2008 9:15 AM (GMT -7)   
Thanks all! Mom does have the attitutde of what kind of life is staying home all the time. She went for a second opinon yesterday and that dr said No to any surgery - He wants to try Remicaide or Humaria. He feels her small intestines is inflammed and feels like if they do a ilestomoy then it will be attaching inflammed area to the bag and could cause infection and more problems. I think she is looking for a third opinon now.................

BTW - fistula is not through the skin. We know first hand about these things - I have had several fistulas: between small intestines & small intestines (abcessed before they found it so had a bowel resection) and then numerous small intestine to abdominal wall - no fun, it was like having a colostomy without the bag.

Again - thanks for the suggestions - I will keep you posted!
"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/14/2008 4:09 AM (GMT -7)   
Definitely seek those 2nd and 3rd opinions just to be informed and to be able to make the best decision on the information you have. Not being able to leave the house is a horrible place to be. I have been there - NO quality of life. I have CD - no recurrence for me since my ileo in 1984!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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