to get or not to get!!!!!! The bag

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chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 3/29/2011 4:48 PM (GMT -6)   
I have had chrohns for like 10 yrs.  I have been having lots of problems with my chrohn's.  I am on humira right now with lots of over the counter vitamins.  I just got out of the hospital where they had to put a ng tube in me.  I love them and hate them at the same time.  Sick of going to hospital for this d/d.  I am trying to weigh out the pros and cons.  I just want to be kinda normal.  yeah   Being single, with a bag does not sound to attractive. 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/29/2011 5:12 PM (GMT -6)   
GET IT!!!
You will be able to have a life again! And hey don't worry about the attractive thing, noone will know! i got hit on by a guy 10 years younger than me today, he didn't know i had a bag!. that's good for my ego, even though he wasn't cute, lol.
But really, i know you have chrohns, so it's not quite the same, i had uc, but i chose a perm ileo. And it erased ALL my sympotoms, i know for chrohns it's not a complete cure, but there are alot of people on this board who are now med free, and living great and wonderful lives now!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/29/2011 5:13 PM (GMT -6)   
I was single when I got my ileostomy at age of 20 for crohn's. TBH best decision I ever made, it gave me my life back and as for dating etc made no difference. I met my husband 2 years later and told him on our first proper date, if he was going to run with shock didn't want to get too attached to him, and he wasn't bothered at all. The other boyfriends I had in those two years were not bothered either, so don't worry about that.

However, only you can make the decision, you have to think about how your life is at the moment and whether you want to continue living like that or whether you have got to the point of having enough of the bathroom dash, pain, lack of life etc. Having the bag is just as much a mental decision as well as a physical, to me it has never been a big deal. I can see where you are coming from by saying being single with a bag is not attractive but then again rushing to the bathroom and being in pain aren't all that sexy either so it is really if you can view it as a positive and not a negative. Gaining your life back as opposed to allowing this illness to rule you.

All my friends and colleagues know, not embarrased by it as it allowed me to live my life again. Good luck with whatever you decide, only you will know what is best for you.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/29/2011 6:29 PM (GMT -6)   
I am not single, but I have to say that having no energy, high fevers, urgency, and all these weird complications of Crohn's I was getting (eye problems, boils on my butt etc) were more detrimental to my relationship than a bag is ever going to be.... and if I, God forbid, ended up single again, I would have been way too fatigued to even think about meeting someone new.... I am just a few weeks out of surgery, so have not really seen the "prize," yet..... it is a personal decision .... I was opposed to it until I wasn't, and then I was very clear, and I still am glad I did it.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/29/2011 8:04 PM (GMT -6)   
I agree... definitely consider getting it!! Life without Crohn's and all of the medications is incredible, plus nobody can tell that I have an ileostomy. If I knew then what I know now, I would have done it years earlier!
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/29/2011 9:10 PM (GMT -6)   
Chico, I have a LOT in common with you. I just got my permanent ileo last year, and I had also had Crohn's for 10 years at the time. I was 28 and single and living 1,000 miles from my family. But I am SO THANKFUL that I did it. Take some time and read around on this board for more info...most of us would never go back to the life we were living before the surgery. And I agree with blueglass...I'm dating now, and I wasn't before the surgery. I didn't feel well enough or have the energy. Plus, I feel an ostomy is MUCH easier to explain to someone with dignity than it is to explain constant diarrhea.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/30/2011 7:51 AM (GMT -6)   
I am not one to go all pollyanna -- I would have preferred to never have Crohn's, absolutely no doubt about that .... but also don't forget that dealing with a chronic illness gives you strengths, maybe not the same ones for everyone, but certainly the people who get it young tend to have to become more mature than most of their peers, and often people learn a kind of compassion (i.e. to avoid saying all the stupid things that people are talking about on another post), and humor comes with it for many people too...... so, you might just be seeing the negatives.

I think one of the most surprising things for me about meeting the right person was that some of the things I considered faults were actually features.... i.e. I thought I talked too much about past hurts, but my partner had ex's that wouldn't talk at all, so liked it that I did this....

I think that anyone who likes you a lot but finds and ostomy bag a deal breaker is probably not a good person to be with anyways....

But you do have to be well enough to do something besides go to the bathroom and sleep.....

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/30/2011 4:50 PM (GMT -6)   
Quality of life is MORE important than what another person thinks about an ostomy!

Think of it as a positive about you (no pain for one!) and it will help you see the good/bad/ugly about potential suitors:)

I, for one, am very glad I had my surgery and I have to say I haven't had one person say anything bad...actually, they've been more curious, in a good way!

Make sure you talk with your doctors about all the 'what ifs'. The reason I had my surgery might not be the same issues you have to deal with. Just like each of us is affected differently our surgeries might be different, too.

Good luck and I hope you find relief soon!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/30/2011 6:33 PM (GMT -6)   
Do make sure you discuss the what ifs good point! But also remember they are gonna tell you every single bad thing that can happen, for liability reasons that doesn't mean those things usually happen!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 3/31/2011 8:46 AM (GMT -6)   
Thanks for all the comments.  It is a big decission.  I am now trying to weigh out all the pros and cons.  The way i see it their are more pros then cons.  Only thing bad is the surgery and time off of work.  As to the single life they have to like me not the other crap like chrohns.  And believe me i am worh it.  Good job good person. yeah    Again thanks.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/31/2011 2:11 PM (GMT -6)   
Chico -- good luck. You will know when the time is right for you. My husband suffered (and me along with him) and held it off as long as he could and just reached the point of being sick and tired of being sick and tired.

When you are younger you certainly even have more things to think about and more thoughts flooding your mind. But it can't be said enough times......your quality of life is so important.

The only suggestion I do have is... it is certainly easier when you are not in an emergency situation and if you can get it under some kind of control when you are having surgery when you are stronger and possibly off prednisone to help you heal faster can really make a difference post op. Lots of times people do not have that opportunity.

Good luck to you!

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 3/31/2011 3:22 PM (GMT -6)   
The fact that you are not happy now says a lot! I was lucky?? I had a temp before I made the decision to get a permanent illeo. I knew what I was getting into. I can tell you that just made the decision that much easier. I just passed the one year mark from surgery, and yes I did have some complications but I will tell you if I had to do it all over again I would sign up today. I feel better and stronger than I have in years! I am 52 and got my bike out for an 11 mile ride this week....no way I could have done that without 4 bathroom stops a year ago!! You will get YOUR life back..

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 4/5/2011 10:38 PM (GMT -6)   
One of my concerns is showering.  I remember when i had my bag, back in 05.  THey do not seem to stand up to water.  Let me know how to prevent them from working away from your skin while showering?  Help me  make my decision.  I do appreicate all the feee back.  I do have time to way out all of my options.  Again Thanks. bw. yeah

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/6/2011 7:59 AM (GMT -6)   
I learned from this list about the sure seal rings from active lifestyle products. They go around the wafer, are clear, and help keep the wafer tight during swimming and showering. I've only used them a few times, but I'm liking them. I also get the sense that the products are getting better, so the bags might be different than in 05.

I also got this pouch cover made of terry cloth that I put over after showering for ten minutes or so to dry it off.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/6/2011 11:35 AM (GMT -6)   
I've had my ileostomy since 1992 and never had a problem with showering or spending all day in swimming pool or water park and having the bag peel off. Never used any additional adhesive seals on it either. So you can rest assured you can shower, float all day in a swimming pool, swim in the sea or lie around in a water park and the bag will stay stuck tight.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 4/6/2011 12:09 PM (GMT -6)   
     I use the Coloplast Sensura one piece.  Easy as pie to put on, never had a problem with leakage, shower or bathe ....no problems! yeah

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/7/2011 5:18 PM (GMT -6)   
chico41
YUP GET THE APPLIANCE, everyone I know who has crohns has a appliance and are glad that they did.  my  friend is in portland hospital and just got his on monday so cant wait to see him...wishing you well.
 
hello to everyone I have not been on here if awhile and hope your all doing well.  I had a 3 week virus that damm near killed me, but finally pulled out of it in time for moms surgery last friday.  So its been hectic...love you all
 
Leslie nono

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/7/2011 6:20 PM (GMT -6)   
Chico: so far I am using the hollister 2 piece with convex wafer and I haven't had any trouble with it from showering. I don't use any extra tape or seals or anything. After my shower, I dry everything with my hair dryer on cold setting.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/7/2011 6:23 PM (GMT -6)   
Sure seals!!!

If you are using skinprep it can cause the wafer to peel up or it may have been the soap
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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