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laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 6/22/2006 9:18 AM (GMT -6)   
Hi all,
I don't usually post on the Ostomies page, (I'm a regular on the Ulcerative Colitis forum), but I have some questions as I'm considering having j-pouch surgery. 
 
I have to admit I'm getting a little bit scared reading some of the postings on this forum.  It seems like alot can go wrong with these surgeries and I'm really freaked out about having a permanent bag attached to me.  That being said, I'm interested to hear about the experiences of people who have had the j-pouch surgery and how their lives are now.  How often do you have to go to the bathroom?  Is there still urgency?  Does the pouch get infected? Has anyone had the j-pouch surgery fail and ended up with a permanent bag? 
 
Most of all I am wondering if the surgery is worth it compared to the pain and suffering caused by IBS.  I had a nasty flare earlier this year and I'm on all sorts of drugs that are only partially controlling my symptoms.  I'm so tired of living this way, I used to be a really happy and athletic person. Now I feel like my life is run by this disease.  My friends are supportive but I havn't even considered having a relationship in years because so much of my energy goes into managing my illness.  Please help.
 
Laura
Diagnosed Ulcerative Colitis 
100mg Imuran
Prednisone 5mg (tapering)
Neoral Cyclosporine 300mg
Probiotics
L-Glutamine
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/22/2006 10:59 AM (GMT -6)   

Laura,

I did respond to your other post but you brought up some different questions here which I will respond to.

This surgery, and any surgery is scary.  Sometimes we all feel it's better to live how we are, because it is familiar, rather than gamble on the unknown.  For this same eason it took me about a year to make the decision.  What changed it was meeting a j-poucher face to face.  She happened to be my RN while I was on hospital bed rest with my last big flare.  She looked great!  She lived a normal life.  She worked 10 hours a day, had a baby, and ran marathons!  I would not have believed all that was possible had I not met her in person.

There is a condition called Pouchitis which doctors believe is caused by bacterial overgrowth.  I have never had it but I understand it's similar to the flu.  I take probitocs to keep my inventory of good bacteria high, who knows, this may offset it?  For most pouchers this is an occasional problem, for about 1% it's chronic.  Again, many of us have never had it.

about 95% (as confirmed on the j-pouch.org board) are happy with their j-pouches.  Some do fail for a variety of reasons, mostly I think, because they had Crohn's disease, not UC.  If you read that board don't get discouraged (as with this board) with the discussion topics.  These boards are mainly designed for people having problems or who are contemplating surgery.  Most of us who are satisfied wiht our new plumbing are out living life and don't participate in discussion any longer. 

When I awoke from surgery I could IMMEDIATELY tell that my UC and IBS were gone!  I never knew what it felt like to feel like a normal person and I started crying when I no longer had discomfort from the disease.  I also ended my long term relationship (doctor/patient) with my GI and no longer take any medications.  Life is very good indeed.

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
 


laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 6/22/2006 5:41 PM (GMT -6)   
Thanks so much for responding, Suebear!  I have to admit that I was having a bad morning today and I really appreciate hearing some positive feedback about surgical options.  I'll keep you posted about my decision making.  I'm glad your life has improved so much since the surgery and that you're here to help people like me who are on the fence :)
Diagnosed Ulcerative Colitis 
100mg Imuran
Prednisone 5mg (tapering)
Neoral Cyclosporine 300mg
Probiotics
L-Glutamine
 


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/29/2006 2:54 PM (GMT -6)   

                                                                                                                                                 cool   cool Hi there,

            This is walking scared,once again.I am glad to be back on line with all of you who responed to me cry for help,before I had my colosomy surgery done.My surgery was done on the 9th of this month.The doctor said that everthing went well.I am getting used to it,but I have had a small set back.I have developed some kind on an infection,from what a different doctor says.I don't know how,I have so careful in taking care of it.Some how,suddenly I found myself in pain,over top of the surgery site the other day.I had terrible pains when I would stand or sit.I could feel was a large knot all around the top of my site.I found myself going to the nearest hospital.They gave me some kind of medicine for the inflamation.My pain has decreased some what,but it still hurts.I was wondering if this is a common thing that happens to some people who have the colostomy surgery done?I guess the one good thing is that my stoma is shrinking nicely.It has come down from,  1 3/4 down to 1 1/4.

            Well I am going to stop for now,but I still have several questions to ask.So until next time thank you.I am really thankful for each and everyones help.

                                                            walking scared cool


BMTB
Regular Member


Date Joined Aug 2005
Total Posts : 422
   Posted 6/30/2006 12:12 PM (GMT -6)   
Laurar - you might remember me from the UC board. I had my BCIR surgery on March 17. Posts on this site and the j-pouch site scared the ****ens out of me, but they didn't sway my decision. They INFORMED me of possible problems that could arrise from surgery. Any colectomy surgery is major surgery and things can go wrong, but my opinion was that if anything DID go wrong, at least I'd be rid of that danged colon that caused me 15 yrs of pain and suffering.

Having the j-pouch, as you are, leaves you with the option of going to the BCIR or Kock/Koch if the j fails. Don't fear having a permanent bag. I went straight for the BCIR, which means if it fails the only other option I'd have is a bag.

Suebear touched on the pouchitis thing, and I don't know if it is the same for BCIR's as the J-pouches, but I had a terrible case of pouchitis when I got home from the surgery. It was very uncomfortable w/ a lot of gas and cramping, but within 48 hours of being on Cipro, I felt fine.

In my opinion, surgery was DEFINITELY worth it for me. I am only 3.5 months out from having the surgery, and aside from all the benefits of living life NOT in a bathroom and not drowning in drugs, I am realizing that the UC affected me way more deeply than I ever thought. I never knew how much I held back in life - from going out w/ friends, with my husband, from just enjoying life w/out worrying that I would need a bathroom at an inopportune time.

Best of luck!
Brenda
'diagnosed' UC in 1989
Lexapro 20mg
Colon and Rectum Removad via BCIR Surgery 3/17/06
Working on healing and dealing w/ a whole new lifestyle.
Want to FART badly again!!!


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/30/2006 3:11 PM (GMT -6)   

  Hi,

     Thank for responding. I am little new at all of this, so if it sounds a little strange, please forgive me. It has only been three weeks today, since I had my colostomy sugery. I don't understand a lot of things, but I will limit them to one or two questions at a time. How long did it take you to get most of the gas out of your system? I am having a terrible time with it. I don't eat that much food that causes gas. I am not to familiar with all of the of the ostomy items yet.What is a j pouch?

     My husband is either looking out for me, or he does not want to be seen with my. I don't yet know which one it is. He goes out all of the time, and tell me that it is not a good idea for me to go out right now. I still need to stay and rest.

     I know that once I get really used to the colostomy I know that I will like it and not feel like I am being stared at when I go out in public. Right now, the left side of my stomach is still a little bit bigger the right side,and that bother me,because I know that it is like that.

     It does feel good not to have to spend most of my day in the bathroom.

     Well I said one or two questions, and I have all ready done that, so I am going to stop. Thank you once again.

                                                     walking scared   


laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 7/1/2006 6:16 PM (GMT -6)   

Hi Brenda,

Yes I do remember you, and I remember your pouchitis episode.  I'm really glad it all resolved itself, and you're right that it's good to know the risks of surgery before going into it.  I do think that I may have an exaggerated idea of how much of risk I run of getting complications, though.  I'm been doing research and it looks like the odds are significantly in my favor. 

I've been thinking about surgery alot for the past few weeks, going back and forth.  A few days ago I felt pretty certain that I'd go through with it, but then yesterday and today I've been feeling much better which makes me second guess myself.  Ugh, this disease!  I guess I know, though, that even if I go into remission for a few years I'm likely to flare again and then I would DEFINITELY opt for surgery because going through a long round of prednisone and cyclosporine has nearly defeated me on a physical, mental, and emotional level, which is saying alot since I consider myself a fighter and a survivor. 

I'm wondering, since all of you were here making this decision at some point, what questions you asked yourself when you were deciding about the surgery?  I have alot of thoughts, but what was the thing that finally made you decide for the surgery as opposed to continuing to manage the disease?  I really want to make sure I'm taking everything into consideration.

Thank you (and Suebear) so much for all of your help.  I'm feeling pretty scared and alone right now even though I have a good support system.  As hard as the people in my life try to understand, there's just no way they can ever truly know what it's like to be considering having a major organ removed.  I appreciate your taking the time to help me.

Laura    


Diagnosed Ulcerative Colitis 
100mg Imuran
Neoral Cyclosporine 300mg
Probiotics
L-Glutamine
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 7/2/2006 8:24 AM (GMT -6)   

Laura,

I made the decision to have surgery because I could not get off prednisone without flaring again within a few months.  I became more afraid of long term side effects of prednisone use than I was of surgery.  If you are feeling well and managing to remain in remission without prednisone, you don't have to go through with surgery right now.  It's best to have surgery when you are convinced there are no better options.  My recovery was easier because I knew that I had made the best decision regarding my overall health and had no regrets.  Here I am over 5 years later and I still have no regrets and wouldn't trade my life now with life with controlled UC.

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
 


San's
Regular Member


Date Joined Feb 2007
Total Posts : 79
   Posted 8/6/2008 4:18 PM (GMT -6)   

 

  confused Hi getting by'             I HAVE HAD TWO DAYS OF BAD NEWS AND I AM REALLY UP SET AND DEPRSEEDE

       I am so beside myself that I just want to dig a hole and crawl into it.I just can not seem to stop thinking about what the is going on in my head.I am OK for a while and then it just all comes back to me,and the tears start to flow from my eyes down my face.

       Yesterday,I went to see my Plastic Surgeon.He has told me a couple of times that I would benefit fom a brow lift.I did everything that he told me to do,before I went back to see hime which was Yesteday.When I go there,we talked and he told me that he did not think that Medicare would pay for it.But at first the said they would.That is what really got my hopes up.Then I leave out of there all upset and went to my handicap son that was some what on our way home.I felt bad about not be able to take him out McDonals's.That is all he wanted is to go there and spend some time with us.He llive about 80 miles away.   Well on the way hope,we had to stop off and get something to eat,because my husband is a diabetic and he was having an attact.As we were sitting in the restaurant,I just let loose and staying,and the place wal full of people.I could not help it.I was a basket case when we got home.

       As for today,well that is long story,but I was told by three different people that i would be getting a check back that was due me,and now come to find out,I am not going to get it back.I am trying to get a lawyer to fight it,but mean time I am out $675.00,that I reallyl need.In a way,I am scared of getting a lawyer and going to court and starting thing all over again.            

       Today I also tried to keep myself together and call around,to see if I could find a Plastic Surgeon with in my area,which I was lucky and did.But first I need to have what is called a Vision Field Eye Test done.I got for the next week.But there are not sure if my Medicare Insurance will pay for that either.My eyes are so back that my eye lids are drooping over my pupils an all I see is like funny lines in front of me not matter what I look at.  I am just so confused and upset that like I said,all I want to do is cry.

       I hope to hear from you soon.Thanks for reading this and listening to me.

                                                                            Many thanks           

                                                                                 san's sad   confused   mad                      

                                         

 

 

 

 

 

 

 

 

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