J-pouch or colostomy

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Amey
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Date Joined Jul 2006
Total Posts : 942
   Posted 8/7/2007 9:38 AM (GMT -7)   
Hi,
 
It's me Amey.  I am in the hospistal and I have to make a decision.  I really need your advice.  Please tell me the pros and cons of the j-pouch vs. colostomy.  How do they affect your diet?  Gain weight?  Loose weight?  Sex life?  Out control?  Exercise?  Anything you can think of.
 
Thank you so much in advance for all your help.
 
Amey

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 8/7/2007 10:25 AM (GMT -7)   
It would be helpful to know why you are having to make a choice of types of surgery? And I assume your choices are an ileostomy and a j-pouch, not a colostomy or j-pouch?

I had j-pouch surgery for UC six years ago. I have never regretted my decision. In a nutshell if you get the surgery for a j-pouch and don't like it you can always resort to a permanent ileostomy. But if you make the decision to get a permanent ileostomy you can never try a j-pouch.

I exercise almost daily, I backpack, I do 100-200 mile hikes with my j-pouch. My life is fairly normal since surgery. I have gained weight because I am now healthy but I don't mind as I prefer good health to being thin.

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
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/7/2007 11:55 AM (GMT -7)   
sue is right about that, you can go back from a j-pouch. I chose the perm ileostomy though, because i didnt' want the extra surgeries and recovery time, i didn't want the going to the bathroom all the time right after the surgery, and i didn't want to have to worry that the j-pouch would eventually will. Alot of people though, have wonderful times with a j-pouch.
I am glad i chose what I chose, and it hasn't really hindered me any, in fact it's made life easier. I have been able to do things, and go places i never could have gone before. My biggest complaint is that this one pair (out of all my clothes) of jeans, my fav, doesn't fit right anymore, but possibly if i would lose a little weight they might would, lol. It isn't super fun to have to deal with changing the bag and such, but once you have been doing it a while, you ge tused to it, and it's easy and takes no time at all!
Hope you feel better

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/7/2007 1:10 PM (GMT -7)   
I had a total colectomy.  I have since had 2 bowel obstructions.  How is your diet?  What was it like before your j-pouch?  I have such a difficult time eating.  I just want to eat normal. 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 8/8/2007 6:05 AM (GMT -7)   
Obstructions are common in the early days, you will stop having them. Again, eating will vary depending upon which surgery you had, j-pouch or ileosotmy or colostomy. It's hard to know unless you give us more information on your surgery?

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
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/9/2007 12:55 PM (GMT -7)   
Sue,

I had a total colectomy in 2001, in which case the anastimosis narrowed and prevented formed stools from passing through my intestines to my rectum. For several years I was on a liquid diet and then in 2005, I had another surgery for small bowel obstructions. In 2006, I had another surgery. The anastimosis was reopened and therefore this was a revised coletomy. Now, 2007, my anastimosis is narrowed again and I have been unable to eat solids for 6 months. At this point, my doctors are recommending either a bag or a j-pouch. I am trying to learn more about both and mentally prepare myself for either surgery.

Thanks for your help.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 8/9/2007 1:30 PM (GMT -7)   
Amey,

Thanks for the clarification. I have a j-pouch and can eat anything, there are no foods (including popcorn and nuts) that cause me problems with digestion, obstructions, or output. Since I previosly had UC my diet had been fairly limited (due to discomfort) but I have been relieved of that. I feel I made the best decision for my particular case. Life is not perfect but it is way better than living with disease and I have never regretted my surgery choice. I know it's a very difficult decision to make and I wish you the best while you review your options.

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 8/9/2007 1:50 PM (GMT -7)   
Hi Amey,
I've had an ileostomy for over a year and haven't found anything that I cannot eat. Since I'm healthy again, I have gained a couple of pounds, but nothing major.

I can exercise and swim in the pool for hours without any problems. The adhesive wafer stays on easily for 7 days, and that's after getting it wet every day in the shower.

I have the energy of a healthy 36 year-old, so I'm able to work a full-time job, go to the grocery store after work, cook dinner, clean up, and hang out with my hubby before going to bed. He doesn't even notice that I have a bag, so it hasn't put a damper on our sex life. :)

Hope that helps!
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/9/2007 2:21 PM (GMT -7)   
flchurchlady,

Thank you for your comments. When I think of a bag, I imagine a small pouch that might fill up with stool randomly throughout the day. This would include while I am teaching fitness classes, swimming, having intercourse, and so on. How do you prevent your bag from filling doing your activities? I am scared of the thought of a bag filling under my bathing suit and looking like I just grew a huge abdomen. Can you control when you bag fill and when it does not? How do you keep it from interfering with you sex life? Doesn't it complicate things a little or is may imagination running in overload?

I don't know anything about bag and I have no idea what to expect. Even if I choose a J-Pouch, I will still have a bag for 2-3 months.

Thank you for your responses. They are a huge help!

Sue,
My doctors tell me that a J-Pouch means that I could be stuck have to wearing diapers. Is that true?

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/10/2007 1:34 AM (GMT -7)   
Amey,
I'm glad you're asking questions and expressing your concerns. I didn't find this forum until a year after my surgery, so I had nobody to ask these questions to.

Having a temporary ileostomy will not interfere with your active lifestyle at all. It's true that the stoma has a mind of its own and goes at random, but it's mostly after a meal, and you probably wouldn't eat a big meal before teaching a fitness class.

Mine is mostly active at night and in the morning before I go to work. During the day, it doesn't do too much, so the pouch is completely flat and unnoticeable under my clothes. Even if it does fill up a little, it only takes a second to empty it, since the pouch has a velcro opening at the bottom of it.

When it comes to bathing suits, I wear a one-piece halter top with a skirt. It has two layers, so it completely hides the pouch. I feel really comfortable in it, and go to the beach and swim in the pool a lot. I like to wear nighties to bed and tend to just keep it on when hubby and I get intimate, so it works out great.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 8/10/2007 3:59 AM (GMT -7)   
Well, speaking from the point of view of someone who has had an ileostomy for 31 years...

How do they affect your diet?

Now I can eat anything I like - and it shows lol


Gain weight?

Oooh yeah - but that's cos I don't stop eating!

Lose weight?

I wish *sigh*

Sex life?

I've never had sex without a bag so I can't compare but I will tell you that sex is great with one.

Out control?

No control - ileostomies 'work' 95% of the time but that's ok, it all ends up in the bag!

Exercise?

Yes, I should!

I know ileostomates who are qualified gym instructors, have been parachuting, one friend regularly crawls through caves and goes rock climbing.

I do go swimming regularly in summer - just wear a one piece bathing suit with a splash of colour or a pattern over the stoma site. Never in 31 years has anyone ever commented they can tell I have a bag under my bathing suit.

Basically, your ostomy will not stop you from doing anything you want to do - only your mind will!

Regrets?

Only that I have no excuse to read on the loo anymore - two minutes and I've peed, emptied and am out of there!
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/10/2007 8:47 AM (GMT -7)   
Shaz,

LOL, you are hilarious! I really needed to laugh today! Thank you for that. I appreciate you through comments. It has bought me a lot of comfort with this decision.

Flchurchlady,
Your words are always uplifting! I cannot express to you my gratitude!

Thank you both immensely. :o)

april417
Regular Member


Date Joined Jul 2007
Total Posts : 204
   Posted 8/10/2007 9:11 AM (GMT -7)   

Amey,

Sorry to hear you are in the hospital. Did your doctor finally come in and talk to

you.  I've been thinking about you and wondering what happen with the test.

Let me know what the doctor says.......

Thinking of you

Apri


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/10/2007 10:50 AM (GMT -7)   
April,

No news yet...ACKK! The wait is stressing me out. I have been here 7 days now and the insurance company is stating that they are not going to pay for my stay since I have not had surgery yet, nor have I even seen a surgeon at this point. I have basically just been sitting in this room on a I.V. fluids for 7 days for nothing!

I am getting pretty frustrated. Someone better cut me open or send me home :o)

Amey

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/10/2007 2:33 PM (GMT -7)   
LOL, when i went to the dr i told them the same thing, either you cut it out, or i will!
Amey, if you can, look for some of the famous people who have ostomies, you will be amazed, Fred Astaire has one, and think of all he can do. It does fill up constantly, but if you think about it, if someone looks at you and you have a bulge there, which like they said, you can empty it in no time, alot quicker than you can go the oldfashioned way, they won't think you have an ostomy, they will think you have your phone in their or some kleenex or money.
When i first thought about having a bag, i thought about having one of those old fashioned hot water things attached to my side. You know the things that people along time ago, used to fill with hot water and put at their feet to stay warm? I thought that was what i was gonna have attached to me! But it's nothing like that.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/10/2007 6:19 PM (GMT -7)   
Amey,
I feel so bad that you're still waiting to see your doctor. I'd call his answering service first thing in the morning and have him paged to call you in the hospital, because you need to see him ASAP. My dad was an OB/GYN, and he visited his patients in the hospital every day, including Saturdays and Sundays. Remember, he works for you.

You don't need the added stress from the insurance company right now. You're in the hospital because you have a medical problem, and your doctor wants you there, so they are going to have to cover it.

I hope tomorrow turns out to be a better day.
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


april417
Regular Member


Date Joined Jul 2007
Total Posts : 204
   Posted 8/11/2007 8:10 AM (GMT -7)   
Amey,
I would keep bugging the nurses to get your doctor to see you soon.
My doctor is available 24 7 unless he is on vacation.  Is this the same
surgeon you used last time?  If he hasn't gotten in to see you yet I would
take that as a sign, see a different surgeon.
Was he the doctor who admitted you?  I'm sure all the same questions are
going through your mind to and I'm sorry if I'm making you feel worse.
I hope you get your answers soon!!!!
How are feeling though, any better?
 
Apri

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/11/2007 3:12 PM (GMT -7)   
April,

Here is a copy of the message I posted under the Total Colectomy forum...

Well, my surgeon came in last night arounf 9pm. He had been in surgery all day from 6am - 8pm. He wants to run a couple tests on me next week to determine which surgery would be right for me.

He is going to repeat the defocography test on Tuesday...this is where paste is inserted in your rectum and you have to poop it out with an xray examining your rectal function. The last time I had this test, I failed it. I could not get the paste out. He said if I fail it again then I cannot get a J-Pouch. This would leave me with one option.....a bag.

If I can get the poop out, then he would consider a J-pouch but only after a series of more testing and I would have to wait a while to have the surgery because my surgeon is booked up for a couple months.

He said the colostomy could be performed rather easily and he could do that surgery at the end of this week. However, the J-Pouch surgery is long and complicated and he would need to dedicate a large block of time to arrange for that.

I am praying that there is a third option out there for me. I do not want to stay on liquid Jello for the next several months waiting to get a J-Pouch and I do not want to jump into getting a bag either.

This is such a hard decision for me. I honestly do not know what to do, other than pray.

Thanks for listening (or better yet, reading).

Amey

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 8/11/2007 4:44 PM (GMT -7)   
Man, thats rough. I'm still not sure what i would have done had i actually had a decision to make. It was never really an option. As my surgeon put it, he saved my life when he took out my colon. Probably right, i was hurting. But if i was faced with a decision i'm not sure i could have ever said i WANT the bag.
Looking back i'm glad i now have it, it's made my life easier.
It can't be easy trying to picture youself and your life with the bag. All i can offer is the bag really isn't as bad as you probably are thinking it is right now. In my opinion it's more of a lifestyle changing situation than anything else. My health is getting better, i'm no longer in pain, no need to plan my days ( more like minutes) around where the nearest bathroom is, and i'm just not scared to be out in public anymore.
Knowing what i know now, and having the bag for almost a year now, i can say i'm happy the way it turned out.

Stay positive

Slice
"Sweet memories
I never thought it would be like this
Reminding me
Just how close I came to missing" - Peart
 
Crohn's for what seems like forever
Bagged in August 2006


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/12/2007 3:36 PM (GMT -7)   
Slice,

Thank you for your remarks. I am a little freaked out at the moment and your words were helpful. My nurse came in my room last night nand I asked her what a stoma was. She explained to me what it was and told me to look up "stoma pictures" on the internet. I had imagined that a colostomy would involve a very small tube coming out of my stomach into a small clear bag. I did NOT imagine a huge red WHOLE in my stomach with my intestines sticking out! I felt sick to my stomach looking at these stoma images on the internet. I had nightmares all night. I cannot begin to imagine choosing this surgery!

Your words were a huge help to me today. They help calm me down a little and feel more optimistic.

Thank you..

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/12/2007 3:48 PM (GMT -7)   
Amey,
 
The pictures you were seeing on the internet were probably pictures of stoma complications, i.e. infections, prolapses, and necrosis. I know how scared you must be, but youl need to do what's best for your health and that could include a colostomy. We have a couple of patients with them and they're really not gross at all. My aunt had to have one after getting colon cancer.
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Status post colon resection, but now heading towards a total colectomy in September.
Son diagnosed with Crohn's at 17 (now 20). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 8/14/2007 5:40 PM (GMT -7)   
Amey,
 
 I was right there with ya. Couldn't imagine myself with a stoma!!  But like i said, i had no choice.  So i KNOW it must be tough making the actual decision. Stomas aren't really that bad. It took me a while to get used to seeing it. I know what you mean, it can be kinda gross to look at. They aren't all that huge sometimes. Mine actually got smaller in the months after the surgery. Now it's 1 1/8 size.
  I'm surprised the stoma nurse didn't have more info for you than " check the internet".
  It can take some gettng used to, but in the end you will feel better.
  Glad i could be helpful.
 
 Anytime.
 
 
"Sweet memories
I never thought it would be like this
Reminding me
Just how close I came to missing" - Peart
 
Crohn's for what seems like forever
Bagged in August 2006


Surgey... Again.
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/27/2007 1:05 PM (GMT -7)   
I have a question for you. I am in the stage where i have to decide wheather i want to keep my bag or try to reconect again. is there any advice that you can give me on that.


amber

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/27/2007 1:49 PM (GMT -7)   
Amber,

I have had my bag for less than a two weeks. I do have the option to have a reversal in the future; however, I would be right back in the same situation I was in before having the bag.

Here are my 2-cents...I do not like this bag! It is itchy, smelly, it sweats, I look pregnant, my hubby is not happy with me, my clothes do not feel right, my skin is irritated and red, I leak, I feel a little uneasy in public, etc.

Will I have a reversal oneday? Absolutely not! I feel better today than I have in years and I have only been healing for 12 days. I cannot imagine how great I will feel in 6 months or even a year!


Slice,
Thank you for your comforting words! I helps to know that I am not alone. Like you, my stoma is getting smaller. It looks like a large red grape. If there way just some way to make it look sexy for my husband I would be all set! Maybe I could plug up my stoma with a cork, draw a smiley face on it and put some lace around it ~~~wishful thinking~~~

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/27/2007 1:51 PM (GMT -7)   
Amber,

Another comment...have you looked at www.j-pouch.org? Many people there have been reconnected and they have lots of experiences to share. You may want to research that forum.
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