Hi! Need Help Please!

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andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/27/2009 12:58 AM (GMT -7)   
Hi Everyone,
My story is a long winded one so I will cut it down and hopefully not bore you to tears. I have had crohns disease for the past 21 years and have been very sick for the last few years, we have tried pretty much every drug therapy there is and currently on humira which they are about to call it unsucessful as well since I am still very sick and constantly losing control of my bowel, I am plumetting out of control and scared to death to leave the house for fear of this happening, I do wear the good old tena pads when I go out for safety but I feel I have no quality of life. I had a right side hemocolectomy done 2 years ago and the crohns came back 6 weeks later, my GI says its the fastest he has ever seen it come back. Anyway we are now considering an ostomy and I am so scared and need as much input from you guys as possible. Does an ostomy have a bad odour? Has it been ok for your sex life? Has your quality of life improved big time? Oh and at the moment I have a stricture so off to the hospital tomorrow for a ct scan, then a colonoscope in 2 weeks. The pain is not good and I am my own worst enemy, cause I am very stubborn and try to avoid hospital at all costs then I get so sick I am rushed to hospital. Yeah I know, stupid huh yeah . I am just so depressed and hate spending so much time in the hospital to the point every one that works there knows my name lol. Anyway thanks for listening any input would be greatly appreciated.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2009 10:42 AM (GMT -7)   
it has an odor, any poo does! but it onlly smells when you empty it into the toilet, i swear that you do not go around smelling all the time!
Maybe i'm missing it but i dont see where you said if you were male or female. I'm a girl and it hasnt hurt my sex life,actually helped it cause now i feel like doing, um, things, lol.
and quality of life has improved 10000% it's amazing how much better you will feel!
read robynbyrds post about having an ileo, there is alot of good info in there, and ask away if you have any more questions!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/27/2009 11:17 AM (GMT -7)   
The only time I smell my ostomy is when I empty it into the toilet. In my opinion, it doesn't even stink as bad as poop. I think it smells a bit like what I ate-a bit. I don't stink either! If you put your nose to my bag, you still can't smell it. (My husband actually did that....just to see). My surgeries are too recent to talk about a sex life yet. I'm still too sore and afraid.
Even though I had complications, my quality of life has improved a lot. I can eat anything! I went to the grocery store the other day and I just couldn't get over that I could buy anything. I didn't have to read labels. So far, nothing bothers me. I'm having left over chinese for lunch right now.
I think we ALL hate hospitals and put it off longer than we should. Too many bad experiences. The only time I want to go back is if I'm in normal labor to have another baby :)

Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 1/27/2009 1:27 PM (GMT -7)   

Hi there,

seems like you have suffered long enough.  I have an ileostomy and the discharge is not like stool that has set in the colon for a while.  It is more liquid and still has a less offensive odor.  It is easily controlled with a few drops of a liquid especially for ostomy pouches at each emptying.  I have gone to a much less expensive hydrogen peroxide 3% solution that is as good at controlling odor as the others.  But I used the commercial ones till I got braver about trying new things.  Some say not to use the hydrogen peroxide.  In the hospital they don't tell you there is anything to put in the pouch for odor, and I thought I was bound to have a stinky bathroom, but like the others have said, it only gives you a whiff when you empty the pouch and if I use something in there for odor I never smell anything.  Confidence of not smelling, is so important for us to get back into life.  It is nice not to have to think about bowels all the time like before. 

Hopeso 


Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
T1c
Da Vinci on 12-14-07


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2009 2:29 PM (GMT -7)   
soemthing else you can do in the bathroom at home is light a candle when you go in and then blow it out after you empty or light a match after you empty, that takes the smell out of the air too.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/27/2009 10:16 PM (GMT -7)   
Does an ostomy have a bad odor? There is no odor until you go to empty, which only happens if you have not put deodorizer drops in.

Has it been ok for your sex life? My sex life has improved dramatically, because I'm not sick anymore and feel like having sex again.
Has your quality of life improved big time? Oh yes!!!! yeah
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/27/2009 11:56 PM (GMT -7)   
Thanks for your help everyone. I have just come home after having ct scan with contrast and didnt handle it too well, I started throwing up right in the middle of it and then afterwards running to the toilet to the point my butt hurts so much. After reading your posts I am feeling a little more comfortable with the thought of having an ostomy, still scared but I cant continue to go through life like this either, I honestly cant deal with it for much longer. Summerstorm I am a 46 year old female. Thanks for making me feel welcome and helping out
Take care all

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/28/2009 5:10 AM (GMT -7)   
Oh my goodness, that's terrible! sad Now is the time to kick Crohn's in the butt and take your life back. Have you met with a colorectal surgeon yet? If not, I suggest making the appointment today and moving forward. I used to be that sick and am completely healthy now, so I am living proof that surgery will help give you your life back.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/28/2009 5:33 AM (GMT -7)   
Ditto to flchurchlady! I am med free and loving life...

I don't use drops in my pouch, but when i am out I spay Lysol (I carry a small travel size one in my purse) in the toilet before I empty and you cannot smell anything:)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/28/2009 10:39 AM (GMT -7)   
andorable-there is a post on here from tubesforwomen and she makes tubetops for after surgery, she is actually making some special for this board that alot of women use during sex, to hide the bag I use a belly band which is the same thing basically.
If you put those clorox tabs in your toilet they will get rid of the smell
Lysol works good i couldnt fidn the small bottles though, so i just use spray breath freshner.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/28/2009 1:59 PM (GMT -7)   
oops i said the post is by tubesforwomen, it's actually from LittleE its called Tube Tops Rule

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/28/2009 7:43 PM (GMT -7)   
thanks summerstorm I will check it out. I am seeing a colorectal surgeon in 2 weeks, to chat about my options. thanks all u are a great bunch

Teebs
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/28/2009 8:00 PM (GMT -7)   
I too avoided the hospital or meds until I was so sick my family was afraid I was going to die.  Which is actually how I ended up finally having surgery.  There was no other option left.  I have to say, the bag, once you get used to it, is GREAT.  No more worry about how close the nearest bathroom is or how long ago you ate, or what you ate and how sick it might make you.  Because you're not worrying and you can eat and absorb the nutrients you will feel so much better. 
Make sure you have a good surgeon and a good ostomy nurse after.  They can make all the difference in the world.
Good luck to you turn
UC diagnosed in 2002
total collectomy in 8/2008
j-pouch 11/2008
awaiting reconnection


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 1/29/2009 11:16 PM (GMT -7)   
Andorable, I am a 44 year old women whose been married 25 years. I was worried about having sex with a bag on as well. There are tiny pouches called caps you can use if you wear a two piece. I find just folding and taping the bag works well. I like wearing a one piece - Coloplast Sensura for sensitive skin.

Once I started taking mega doses of a prescription fish oil capsule, I really started noticing a horrible odor coming from my bag, but I started taking a "Beano" table with the capsules (two capsules in the morning and two at night) and using M9 Deodorant Drops in my bag - no more odor. I don't really even smell anything when I empty. So, between the Beano and the M9 Drops, I'm doing well.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/30/2009 12:56 AM (GMT -7)   
Ohio43,
I'm glad you found a solution to your odor problem. I know anytime I eat seafood, which isn't ooo often, I too get a horrible smell in omy output. Seafood is just something I prefer to eat while I will be at home. I use the clorox tabs in the toilet, and I use Ostofresh drops in my pouch.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/30/2009 2:15 AM (GMT -7)   
Thank you all. I'm having a mega bad day again today, got my ct scan results and have active disease through out the lower end of the large bowel. My boyfriend got home from work and went to the toilet then suddenly I needed to go but didnt make it yet again. My bowels just released and happens pretty much every day. I am so upset right now and desperate for help. I dont know howmuch lower I can go. Both physically and mentally Im really not coping very well at all. I am however lucky my boyfriend is good about it all, but I am a mess. Sorry to lay it all on you guys but you all understand what I am going through. I think I will have to go ahead with the surgery to get back some quality of life. Otherwise theres no point being here the way I am now. Thanks for reading my post and helping me out. I have to get through this soon

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/30/2009 3:31 AM (GMT -7)   
Big hug to you. I've been through what you're going through and completely understand how you feel. cry

My disease was also in the lower end of the large intestine and rectum, so you would most likely have the same results that I did from surgery, which has been no more Crohn's. It has been the closest thing to a cure for me, and that's why I log on here every day, to tell people like you that surgery will make your life so much better than the way it is now.

I'm glad you have a loving and supportive man in your life. My husband has been wonderful, too, and was my rock during all the years I was sick. He has also been here to see me healthy after surgery. Going through this bonds you in a special way.

Can you ask your doctor for some medicine to help you get through this emotionally until you're through surgery? Please know that we are all here for you and will support you every step of the way. :-)

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 :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/30/2009 5:31 AM (GMT -7)   
Good men are really hard to find!!! I cannot believe my luck...I'm glad my husband knew he was going to marry me and stuck around until I knew it too:) Just think how good things will be when you are better than new!!!

It is really hard dealing with days like that, but you made it! Don't expect your body to do too much and take it hour by hour. I remember living on my couch for two weeks before one of my surgeries and thinking "why me" but I got through it and felt 100 times better...you'll feel better, too, after surgery.

Definately ask your doc for something to help with the emotional issues...you'll be glad you did. Keep up posted on how things are going...

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/30/2009 7:05 AM (GMT -7)   
Andorable,
I just wanted to stop by here and wish you the best. I'd say getting rid of the Crohn's is the route to go, getting healthy is the first step to being happy. Are you happy now? I think you just answered what you need to do.

I also agree with the others about asking the dr for something to help you thru these really emotional times. And, we are really compassionate people here on this board. Log in and talk to us. We have been in your shoes. Everyone has a different story and sometimes hearing all those stories help in making the decisions you need to. We are here for ya!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/30/2009 9:23 PM (GMT -7)   
Thanks everyone you are all so sweet. If you are talking about antideppresants to help me through I am already on them and have been for some time. No amount of antideppresants will help me feel better about losing control of my bowel all the time. It is a humiliating feeling which I know you all have been there before. I had a fall this morning on a wet floor and bruised my knee badly and in the process my bowels gave way again, I spend so much time in tears over it, but try to remind myself there are people worse of than me. Anyway my man wants to take me to the movies today but I am scared to death to go, wish me luck if I do decide to take the gamble. Take care all and thanks heaps

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/30/2009 10:32 PM (GMT -7)   
well i do hope your movies go well!
once you have surgery, movies will be a breeze!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/31/2009 5:13 AM (GMT -7)   
Which movie did you go see?

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/31/2009 8:12 PM (GMT -7)   
I couldnt pluck up the courage to go to the movies, so we stayed home. maybe one day
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