To pouch or not to pouch - that is the question!

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ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/4/2009 12:19 PM (GMT -6)   
Hi,
I had my first folow up appointment with my surgeon since removal of colon due to UC today.  I have been steriod free for a week now however have had inflammation and bleeding from the rectal stump that has been left.  Surgeon said I have diversion colitis as well as UC which is causing me problems - running to the toilet, pain, feeling unwell etc.. basically a lot of the symtoms I had with UC.
 
He said I can have a Jpouch done Sept time which would address this or have the stump removed along with everything else and be closed up there for good.
 
I dont know how to chose going for the Jpouch or going for removal and a gauranteed success outcome.  I have taken to life with a bag quite well and think I could cope OK.  I also feel like today I have had the hope of "normality" dangled infront of me.  The risk of problems with a Jpouch are quite high from what i understand and come long with their own issues such as lots of BMs a day, butt burn, pouchitis etc.
 
What made the people in here waiting for takedown/3 step pouch creation choose to go for a jpouch?  Am I being a glutten for punishment by trying?
 
I wasn't expecting so soon after making the choice to have an ileostomy to have to make another choice.  I cant stay with the UC like it is at the moment, and if they remove everything now I cant have a Jpouch done.
 
Anyone any experience?
Many thanks,
Elli.
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 6/4/2009 12:58 PM (GMT -6)   
Hi Elli-
I am also having the 3 step process. I will have step 2 june 23rd in which the doctor will remove the rectum and part of the sigmoid he left. I have been having 2-3 UC-like toilets events a day. It is do to the "sick" rectum that is still left until step 2- so I know what you are going through.
 
I saw the nurse yesterday and told her I am a little scared about having the jpouch. For so long I have counted on the pouch to "save me" from UC. I am scared that it won't work- too many scary stories. She told me to stop going to discussion boards.... Yeah- I know. She meant well though. Her contention is that people with problems are the ones who come here and the the happy jpouchers are out having fun. I do agree with her to a point- even though we have lots of great resources here who have jpouches and are very healthy and happy.
 
THe doctor told me that his success rate is 95%. That is jpouchers who are healthy and happy with the pouch.
 
I am going through with the surgeries and the jpouch. I have to try it to ease my mind. If for whatever reason it fails, I know I can come back to the ileostomy. If I didn't do it, I would wonder, what if?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/4/2009 1:32 PM (GMT -6)   
HI Jackie,
 
I too have been told to stay away from all the horror stories that people post online, however 1. i think it is important to brace myself 2. i know i would not have been able to deal with all this without this site!
 
I dont mean to focus your mind on bad scary stuff, but(!), do the stories of problem pouchs scare you?  My surgeon said that the chance of a pouch failing goes up 1% a year.  How have you braced yourself for the initial stages when you get connected?  The biggest thing I hate about our problems is that everytime you ask a question, the nurse, doctor etc always ends their answer with "but everyone is different".  He said their is just no way to know if i will settle on 4-6 BMs a day with a jpouch, or be closer to 12-16.  I find it such a gamble to take in my head.  AARRGGHH!!!
 
I did just think about how i would feel if i could look down on my tummy and see only skin - no stoma, no bag. 
 
I worry about how long it will take before i will have control and be able to go back to work.  MY stoma nurse is going to put my in contact with someone my age who has been through so that might help.  I was told the poeple who help others answer questions etc are the poeple who have the good outcomes.
 
I also worry if it does not go well, and i loose some of my small intestine and go back to an ileostomy will that my output even more watery than it is now as there is less of it and will it mean more trips to the bathroom to empty - could i end up even worse of than i am now?  I am so confused as to what to do.
 
 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/4/2009 1:58 PM (GMT -6)   
Jpouch surgery is far more successful than what you read on the internet. I was scared too but went ahead with it with the attitude that if I didn't like it I could revert back. However, if I chose a permanent ostomy I could never try a jpouch. To each his own and there is no one perfect surgery or perfect decision. Every option has a list of pros and cons. It's a matter of you picking out what's important for you. However, I cannot imagine spending the next 3 months living with diversionary UC!!! Are you being treated for that?

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


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/4/2009 2:08 PM (GMT -6)   
Hi Sue

I now have to take Pentasa suppositories (mesalazine) to treat it. I really thought i was done with treatment like this, I think thats kinda got me down a bit.

How many BMs a day are you on? Can you get through the nigh OK? Very up front questions - sorry if too upfront!
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 6/4/2009 7:58 PM (GMT -6)   

Well- now I am even more sure about going through with it. I have been battling a horrible fungal rash around the stoma. It is painful and itchy and a nightmare to deal with. I have a prescription cream now. I just went through hell trying to change my bag- letting the cream dry-- as my stoma was shooting out stuff everywhere- trying to get the wafer to stick. I am really sick of this and nobody at my house knows what I truly go through even though my husband is understanding. He hasn't seen the stoma or the horrible rash.

So-- Elli- I am ready because you could also have complications from a ileostomy sooooooo get me to surgery......

 

 


Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/4/2009 8:16 PM (GMT -6)   

I have no idea what my frequency is but I am a 100-200 mile hiker and I can promise you if it got in the way of my physical activities I would opt for something different.  My diet consists of about 90% fresh fruit so I do get up at night.  If I would eat less fiber I would get up maybe once per night.  I choose to eat what I want and the disruption does not interfere with quality sleep.  Some pouchers do sleep through the night.  It's hard to know ahead which way you will go.  And no question is too nosey!  You  need to be well informed so ask anything!

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


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/5/2009 7:05 PM (GMT -6)   
Jackie,
There's a prescription anti-fungal powder called Nystatin that works well, too. I like it, because the wafer sticks on top of it.

Elli,
If I could have gotten a j-pouch, I would have gone with one. Unfortunately, I had Crohn's in the rectum, so I couldn't. I've only heard good stories about them and have a good friend who is happy with hers. Like the others said, you can always go with a permanent ileostomy down the road, if you are unhappy with the results.
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.


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/6/2009 6:12 PM (GMT -6)   
Short answer: Do it.

If you don't you won't know if it worked for you. I was skeptical ... the last 2 days for me have been bliss. They have not been perfect but let me tell you, I have not felt this good in years. Everyone is different, everyone heals differently, surgeons and doctors and nurses can only count on medicine to take you that far. YOU have to do the rest.

Be positive, think good happy thoughts and it will all work out how HE has it planned for you.

I'm on my way to recovery and already thinking of baby stuff :-) Now I'm worried about what I need to buy for the baby!

Jackie: Mary Lou told me the same thing about forums. I agree with her 100%. One thing ... I would not have learned about my ostomy problems anywhere else and how to fix them. So it's a love hate relationship :-)

If you have any questions about the J Pouch or need some help feel free to ask the thousands of success stories. There are bound to be some people with problems. I may run into problems myself, until then, I believe.
--
Diagnosed with Ulcerative Colitis - 1998
Failed, Azathioprene, Homeopathic, Ayurvedic, Remicade, Humira treatment
Steroid dependent - 2009

Temp ileostomy - April 7th 2009 (4 days)
Dehydration - April 24th 2009 (2 days)
Fluid around J Pouch and high fever - May 11th 2009 (4 days)
Takedown surgery - June 3rd 2009


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/7/2009 2:17 PM (GMT -6)   
I thought they took all the colon tissue when they did a jpouch.  If they left any colon behind surely people would continue to get UC?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/7/2009 2:33 PM (GMT -6)   

A jpouch does NOT leave you at high risk for colon cancer.  It is true that 1-2cm of rectal cuff are left to maintain control but that cuff area is scoped and biopsied every year or two.  Cancer cells that may be caught can be effectively treated.  To date only 1 jpoucher has been diagnosed with colon cancer and she did have to have her jpouch removed.  That's one person out of how many thousands of us.  Her cancer was not caught until it was too late.  I would not let the fear of cancer stop you from purusing this option as the risk is so very low. 

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


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/8/2009 7:52 AM (GMT -6)   
Ron,

No, I am not looking for an argument with you and get my information from my surgeon who is one of the top CR surgeons in the US and who helped pioneer this surgery back in the 80s. As I recall the risk for developing CC at the cuff is less than 1%. I had surgery for UC, not for CC or for dysplasia but I know there are lots of jpouchers out there who had surgery for both CC and dysplasia. Did you have surgery for CC or dysplasia?

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


spiderman
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 6/11/2009 4:26 AM (GMT -6)   
Eli,
In the UK there is a fabulous organization called IA who can arrange for you to speak to and/or meet people who have trodden the path already, you could do worse than giving them a call or visiting their website (www.iasupport.org).

BW


Peter
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