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MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 227
   Posted 9/3/2011 12:42 PM (GMT -6)   
Hi Everyone!
We are being released from the hospital this afternoon!  Brandon is doing great. Eating solid foods and loving every minute of not running to the bathroom with cramps.  Brandon is UC FREE!  yeah   He has taken total ownership of the colostomy bag and asks for very little help from me.   Last night, six of his friends (girls and guys) visited with him and they were all joking with him about it and making him laugh.  He isn't quite sure that he is ready to go back to school with it yet. The Cleveland Clinic is amazing and I couldnt imagine being anywhere else.   
 
@Rachel and Rachel's Mom, thank you for reaching out to Brandon and I (and to everyone else that has).  You have made a tough situation much more bearable for us.  So glad to know that you are out there for help with any questions.  The support on this website is amazing! 
 
@betsaronie,
thank you for the info on the Teen support site yodaa.org.  I will definitely look into it. 
 
@Worried Mom and Collilcat...I am sure that I will be in touch with questions!!  :-)
 
Question:   is there some sort of a pill that can be put in the bag to eliminate some of the odor?   I think that is the worst part.  He has no problem emptying the bag but sometimes the odor just about knocks him out! smhair
 
Thank you all for all of your support!!  Now I am going to go and update our Profile smilewinkgrin

MotherofTeenwithUC
14 yr old male, Diagnosed February 2011. Phase one of 3 stage surgery on 8/30/11, Total abdominal laprascopic colectomy and ostomy. UC FREE! No meds.
Previous meds included: Remicade, 6MP, ,Poly-Iron, Canasa, Asacol 800HD, Colazal, Levsin, Pepcid,Sulfasalazine,Prednisone

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4546
   Posted 9/3/2011 1:06 PM (GMT -6)   
So glad he's doing so well! He had a quick hospital stay...how great! The nurse gave me some drops to add to the bag for odor. It came in a bottle. I don't remember the name but the color of the liquid was blue. If you are still there, ask a nurse.

Isn't it a great feeling to know he is done with UC for good?!
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 9/3/2011 1:24 PM (GMT -6)   

 

 So glad to hear he is doing so well.  My daughter had some kind of single packs she put in hers.  It only lasted about a couple of emptyings.  I did notice the smell got a little better as time went on.  Either that or we just got used to it.  We had to cut hers, so I always made sure she had a couple of them already cut just incase she leaked in the middle of the night.  I told you it was a scary decision, but afterwards you do realize it was the best one.  Good luck


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/3/2011 2:06 PM (GMT -6)   
The smell will get better with time! It's always worst in the hospital.
 
I use hydrogen peroxide (like a capful) every time I empty, and it totally eliminates the odor. Some people use M-9 drops (you can order them with your ostomy supplies) or other odor eliminators that are in the catalogue you order from. Just try things until you find something that works best! Since you can get hydrogen peroxide at Walgreens or any other store I'd say start with that until you can order something else to try.
 
Glad to hear everything else is going great!! Keep up the positive attitude--it makes a huge difference.

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 9/3/2011 3:16 PM (GMT -6)   
Hi there! It's wonderful that he is doing so well and is so accepting of his ostomy. I believe I was in the hospital for about a week. I was 20 at the time of my surgery. I remember the first time we were changing the bag with the nurse in the hospital, I was so afraid to look at my stoma! Luckily I got over it quick and plowed right ahead with everything. Sounds like your son is doing great!

I also use the hydrogen peroxide. It's extremely cheap and easier to get compared to the products made specifically for this reason. I agree it also totally eliminates the odor. The only downside I find though (small downside) is that you just emptied the bag seconds before and now you are putting more liquid into it. But I think the pros outweigh the cons there!

Before using the hydrogen peroxide, however, I actually used Tic Tacs! They do work somewhat, but not as well as other products. Quick and easy to use if you don't have anything else and you're in a bind!

Good luck with everything! :)

IBDISTHEPITS
Regular Member


Date Joined Dec 2009
Total Posts : 357
   Posted 9/3/2011 4:27 PM (GMT -6)   
I am so happy to hear that brandon is doing so well. I have followed your story on HW since you started and I am so happy that Brandon is feeling better and his surgery went so well- You both deserved that!
I hope he can get back to his life and be the 14 yr old boy he should be-
He is lucky to have such a terrific Mom!
Daughter, age 10. Diagnosed with UC 10/2009
Unable to take mesalamines. Finally off Prednisone...never again :(
Current regimen that is working-
6-MP
VSL#3

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/3/2011 7:33 PM (GMT -6)   
Great to hear that he's doing so well!

I also use the hydrogen peroxide, works great, it's cheap, and it's clear (I always managed to get m9 drops in the wrong place in the middle of the night....).

Also, the odor is MUCH worse it at first.... it's still an issue down the line, but nothing like the first week or so, where it made me think I was going to keel over....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. 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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16427
   Posted 9/3/2011 9:32 PM (GMT -6)   
Thanks for the update. I am happy to hear he is going home and that he is feeling well. :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion
Currently: Asacol (3200mg) + 6mp (50mg) + Pristiq (50mg) + Zantac (150mg) + Canasa (1g PM) + cerazette

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/3/2011 11:15 PM (GMT -6)   
I am about to go to bed and this was a really nice post and thread to read to end the evening on. AWESOME!
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 9/3/2011 11:34 PM (GMT -6)   
I remember reading your posts in the other threads and I'm glad to hear that everything is going well! I did notice you said he has a colostomy. I thought he was having the whole colon removed and thus would an ileostomy. Just wanted to know if for some reason they didn't or couldn't take out the whole colon or if maybe you just called it a colostomy on accident :) Also do you know if he will be going for J-pouch? or is the ostomy permanent? and yes the smell will be so much better in another week or two. I never bothered using anything to eliminate odor cause most of the time it didn't smell any worse than anyone else's poop. tongue
anyway, Good luck with the recovery process, make him take his walks!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 9/4/2011 8:47 AM (GMT -6)   
Yay! Pam, I'm so happy to see this post! So glad Brandon is feeling good, getting sprung, and taking charge of things. You're through the hardest part! Keeping a good mental state is important.
I'm sure it feel so good to get home! Hope all goes well. Do you have visiting nurses scheduled at home? They are wonderful and can give you all kinds of good advise. Keep us posted!

And you are more than welcome - it is our time to give back! We're here for you.

~Lynn

Post Edited (Rachel's Mom) : 9/4/2011 7:54:39 AM (GMT-6)


elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 9/4/2011 9:19 AM (GMT -6)   
Wooo hooooo! You are no longer a "mom of teen with UC." How great does that feel?

I elected to have this surgery and was actually in remission and feeling great when I had it done. This put me at a slight mental disadvantage to Brandon as the surgery made me feel worse. I had to always think back to flare times and make those comparisons in order to remind myself that what I had done was truly the right decision. Having been so sick, Brandon is in a great position to fully appreciate the ostomy and how wonderful it is that he isn't cramping and running to the bathroom all the time.

To echo others here, I used the blue Reliamed odor eliminator drops - they're a godsend!

Oh, and you're very welcome. I love finally being in a position to help other people, after being the one asking questions for so long! :)

Rachel
Diagnosed with UC in 2007 at age 14. Three horrible flares, 11 blood transfusions. Tried, among others, prednisone (never worked), 6-MP (worked for a while), and Remicade (worked for a while) before running out of options and getting fed up. 3 step j-pouch; 1st 1/19/11, 2nd 4/20/11, minor complications, 3rd 8/24/11. Already LOVING my j-pouch!
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