Only two bags left

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Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 623
   Posted 9/13/2017 4:44 PM (GMT -7)   
My order of new bags should be in tomorrow or the next day. I just changed it today, but emptied it and scratched it with my stupid finger nail. My nails aren't even that long! There is a small hole, which I tried to tape up with waterproof tape. From what I've read on here, once you get a hole, you should just change it bc it'll inevitably leak.

So do I give it a shot with the tape and keep an eye on it? Or, do I change it and risk going down to 1 bag left?

What who I do if I run out of bags? We went to two local places and they don't have any in stock. Now another thing I'm going to stress about!!!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15237
   Posted 9/13/2017 8:27 PM (GMT -7)   
That's crazy. I never had that happen to me. Do you still have your nurse coming? I got so many samples, I ordered samples from every single company, then my nurse gave me stuff, then I ordered tons. I had met my out of pocket max so i could get anything I needed without question. If my order was coming tomorrow, I'd probably use that last bag, but there's always that "what if", like what if that one is broken or defective or breaks? That really is such a rare thing to happen.

They actually gave me supplies at the hospital too. I thought it was fun to try products. I really wanted to try each and every company's stuff available. I was in search of the perfect bags/wafers. more fun with the end than the loop. The loop was such a chore and i had to use whatever was easy. Usually the moldable one piece by convatec.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 623
   Posted 9/14/2017 4:08 AM (GMT -7)   
UGH another leak this am. It keeps sneaking out through my belly button. I have been laying with a washcloth near where it usually leaks so I was able to get it before it went on the sheets.

I really hope my order comes in today. Now I don't have to worry about that small tear I had yesterday (which the waterproof tape held up pretty well actually) but now I only have one bag left.

My insurance covers at home nursing - and they are available 24/7. They said to call if I had any questions or needed anything. If they can t help me over the phone they will send someone (any time of day) to see me. So, worst case scenario I can call them and they'll help me figure something out, right? Maybe I'll call today and just make sure so I have a back up plan in place.

I am going to call and set up online shioing from one of the companies listed in my supply book. My nurse said to order the max I can do I never run out. I had to go to the local pharm bc their shipping would be quicker than establishing myself as a new customer online.

What a headache. I'm afraid to lay down for fear of a leak, but my back gets sore when I sit for a long time (I think bc I'm slouching). I hate eating bc I know it'll give me stool. It's stupid, I know. But I just wanna avoid using this thing as much as possible. Completely impractical, but darn, I wish I could just get the hang of this.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15237
   Posted 9/14/2017 8:14 AM (GMT -7)   
I really liked ordering online. I never ordered anywhere else. I used edgepark and if I ordered today, I would have my supplies tomorrow. The only slowdown would be getting the doctor's approval, but often that happened really quickly too.

You could also order some samples that you can use for back up. They are free and you get to try stuff:


Most of these places have staff who will help you if you need help choosing samples too. There are a lot more you can get. I swear I requested some from everybody and when i felt like trying something, I would try... I had the ostomy for longer than you though, probably ~6 months total.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Post Edited (notsosicklygirl) : 9/14/2017 9:21:17 AM (GMT-6)


RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/14/2017 1:49 PM (GMT -7)   
Do you use a one piece or two piece? If two, and the bag is still in good shape, you can reuse it if necessary.
Sarah, 27 y/o
June 2017 Flap procedure for abscess
2014 Total proctocolectomy w/ perm ileo
2010 Temp ileostomy
Thyroid Cancer, Crohn's Disease, Autonomic Dysfunction, Heart Shunt, Chronic Kidney Stones

Current rx: Celexa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Dilaudid, Birth Control, Zofran, Lansoprazole, Metoprolol, Benadryl, B12 Shots, Probiotic, Allergy Med, Xanax, Ambien, Loperami

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1546
   Posted 9/14/2017 4:02 PM (GMT -7)   
Yikes that is stressful!

My hospital sent me home with about 30 bags. I remember thinking what do I want all these clear bags for? But it came in really handy while I figured out my samples and supplier.

I second Edgepark. The website is great. Once you get the initial order setup, which I did online too, everything shipped next day.

Your nurse gives great advice and I am a supply hoarder. I only use 8-10 bags a month, but order 20 every month anyways since it's covered. At the moment I'm at a 6 month surplus. A little absurd but for some reason I get anxiety if I have 3 months or less of supplies.

Out of curiosity what bag are you using? That is scary it snagged so easily!! I'm glad the tape helped.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 623
   Posted 9/14/2017 7:39 PM (GMT -7)   
MY supplies came in today! Woot woot! I use a one piece, holister. I did look online and requested a bunch of samples. They companies actually calednme and talked over my concerns and what I was looking for in a new bag/system. They are sending me out starter kits.

3 months supplies- wow! Thats awesome that you don't find yourself I my situation! I'm hoping my reversal surgery will be sooner than later so hopefully I won't need that bit of a supply. Fingers crossed.

I did come home from the hospital with 9 bags, but I've gone through them with leaks and such. And being 3 weeks out, I'be had to change it for diff doc appts so they could look at it and stuff. Hopefully it'll calm down.

I have an appt with the ostomy nurse tomorrow in the office so I'll bring my supplies and she can check the fit to see if we can do something.
Moderate to severe colitis, diagnosed in 2003, hospitalization in 2006, Feb 2017, July 2017 for colitis related complications

Step 1- iliostemy and j pouch creation surgery on Aug 25
Obstruction - hospitalized early Sept

Medications: 15 mg pred (tapering), Zantac, Tylenol

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15237
   Posted 9/14/2017 10:25 PM (GMT -7)   
I used a one piece a lot with my loop because I had to change so often due to leaks. changing just the bag never worked out with mine. I would slop on a one piece every day and hope to make it through 20 hours or so... No way to live, but with the loop, that's the best I could do. I never found a wafer that could keep it managed, even with rings, convex and strips, no luck. It would either leak under the wafer, or feel like it was leaking. Eventually i had anxiety about it and I would change even if there wasn't a leak, but there almost always was a little output 1mm under and it would itch around the edge - not really something that would necessarily require a wafer change, but a few times it was worse so I needed to check, which meant a full change. I couldn't wait to get reversed because of how bad it was. The snap on stuff is so fantastic for the end ileo, but the loop, if it's difficult and yours sounds like it is, you just need to do whatever is easy and works so you don't stress out. You have such a short time. Almost 2 of 8 weeks are over. Trying stuff was fun with my end because it was so easy. I could use any product and get great wear-time, no drama. I could swap bags, try different sizes, a variety of wafers.. the loop i didn't want to play around because nothing ever worked well. I'd get the samples for back up anyway, but use what you know works, if anything. I gave a bunch of my samples/leftovers to someone i knew who was having surgery for UC, and donated the rest to charity. I had a lot left over. It all went to good places.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4783
   Posted 9/15/2017 9:14 AM (GMT -7)   
I prefered a 2-piece with a loop. This way I could change the bag without changing the appliance or vice verse.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226
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