Better luck this week?

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Regular Member

Date Joined Jul 2011
Total Posts : 128
   Posted 8/15/2011 2:58 AM (GMT -6)   
So last week was my first week back to work, 3 weeks after I had my ileostomy surgery. Monday and Tuesday went ok, used the same bags since hospital and I have had some sore skin under the wafer due to output leaking. As everyone seems to go through these phase in the early days, I just got on with it, hoping it would settle in time. Come wednesday afternoon, sitting in my office, I noticed a leak. I grabbed my spare kit and rushed of to the disabled toilett at my work, which was a good choice as I don't think a normal ladies cubicle could have contained what was about to follow. Well my stoma was hyperactive and I was fighting against the tide. Somehow I managed to get a new bag on, but output got on the backing, so I knew it only had a limited lifespan. I quickly rushed home, ca. 20 min drive, at which point it started leaking again, where I chould do a change of bag and clothes properly.
I then phoned my stoma nurse and arranged a meeting for Thursday. She suggested to try convex bags, so far so good, much less leakage than before. She also said she will organise with my delivery company some more convex samples, which arrived on Saturday. I opened the box and - the old, flat type of bags again. Being the w/e I started to panic a bit, praying that I don't have a leak as I only had 2 convex samples left. Planning to phone her today to sort the mess out and get some more bags asap.
So come Sunday, we had a picnic planned with some friends followed by the movies. It was a lovely day at Blenheim palace, when suddenly my front tooth fell out! It' a crown which I had for 10 years. And next to all the leaks I had this week, loosing my tooth really did me in and dampened my spirits first time since the op.( I don't know but my nightmares always involve loosing my teeth.) arrgh is this ever to end!!
So plan for today (I'm taking the day off work) sort my tooth and my bags out and build up my confidence again.
What was your worst week and are there many more to come?
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, temp ileostomy on 7/19

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 8/15/2011 4:44 AM (GMT -6)   
My worst week was similar to yours :) I needed convexity and was using flat wafers, and started experiencing leaks. It was my first week at a new job (teaching 5th grade! Can't exactly just leave the classroom bc of a leak), and I had two leaks during class while waiting for the convex wafers to come in the mail. I just rolled with the punches, asked another teacher to watch my students, etc. It was frustrating but of course I got through it. Once your convex wafers come in the mail I bet you'll have a better time. Just be patient and be glad you're on the road to heath and better times (I know, easier said than done!)
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!! :)

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 8/15/2011 7:42 AM (GMT -6)   
My worst was when I got a big messy leak in the middle of watching a children's play -- what a drag!

You might want to try keeping some marshmallows with you (medical supplies!) and using sure seals. The marshmallows can help stop the output for a few minutes so you can change your pouch -- I learned of that here, and it seems to take people different amounts of marshmallows and waiting time or not, but somewhere in the neighborhood of 4-6 marshmallows and either changing right away or waiting a few minutes seems to help people....

The sure seals are a sticky plastic that goes around the wafer and can contain leaks. I am not sure whether you can get them in the UK, but I think people have posted alternatives (they are like the tegaderm used to hold down IVs).

I had a lot of leaking problems that were fixed when I switched to a convex wafer. Hang in, you'll work it out. Going back to work 3 weeks after the operation is very impressive to me .... I was nowhere near ready at that point.
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

Regular Member

Date Joined Jul 2011
Total Posts : 128
   Posted 8/15/2011 4:07 PM (GMT -6)   
Thanks, I've read alot about these seals here, my stoma nurse hasn't suggested them yet. I think I'll try to get some samples. Well I rang my delivery company and ordered the correct bags, hopefully they will arrive tomorrow. And what was supposed to be a quick fix " glue the tooth back on" dentist appointment this afternoon, turned to be a 1.5 h root canal treatment and filling to put the crown back on. Ah, I soo had my share of doctors now..
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, temp ileostomy on 7/19

Veteran Member

Date Joined Oct 2010
Total Posts : 776
   Posted 8/16/2011 3:19 PM (GMT -6)   
sorry to hear you've had such a rough time :-( am with you on the leaks, although I'm doing a little better now I've figured out I need to cut a different size in the wafter (duh!). Yes we can get 'sure seals' - I use Salts Aloe Vera ones (hydro frame I think they're called) and they are all they are cracked up to be! put 3 on all the way around and you get a nice tight seal which gives you a bit more time if disaster strikes. Well done on getting back to work so soon too and hang in there. It is bound to get better ! x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Veteran Member

Date Joined Jun 2011
Total Posts : 1912
   Posted 8/17/2011 1:36 PM (GMT -6)   
when I was having my bad week, I didn't yet know about this website! OK, so just imagine you never had any intestinal problems at all, and therefore no collectomy, no stoma, no bag, Normal life. If your dental problems happened with no other major health, body and poo issues, it wouldn't be major, jjust a pain in the rear and trips to the dentist. Root canal is pretty much a nightmare for everyone who has to have it.
But it happened during this terrible leaky time! I can tell you that these weeks were a time when I felt completely unstable an ddoubted I'd ever get it together and live a normal life. 3 or 4 weeks after my collectomy, just when the stoma starts shrinking, I went off to rehab for 3 weeks. I live in Germany, where the insurance pays for 3week stays at clinics if you had major surgery. You get your own room, meals with all the patients and lots of physio therapy, all designed for your situation. Phsically,it is really very good for you. But I was sent to one where they were speaking such a weird German dialect I coldn't understnad the people, and I was still feeling s sensitive after the coolectomy that I didn't want to eat meals with total strangers.
I woke up my first mornign with a leak. It leaked again at lunch time and then again in the evening and then again the next morning.
That went on for days, and the stoma nurse coming up every two days and trying out something new. But no one explainedto me that my stoma was shrinking. I thought that the system wasn't working and my body was just going to continue causing chaos and ruinĂ­ng my life. I would start a new job 2 months later and I needed the reliability that leaks weren't going to happen whenver they felt like it  - and two or three times a day at that. I completely withdrew socially while I was in the rehab center, and really resented that I "all this" was happening to me and that I had to be in a rehab center with strangers, to begin with. In truth, it was out in the country and the walks into the little town down the hill were lovely. Friends would meet me there on Sundays, and then things felt sort of normal.
The last five days there I told myslf, soon we're home, and then I only had one more leak. I decided to stick with the convex-light bags, tgether with an eaken seal, because that seemed to be the most reliable system so far, and I also decied to stick with the maxi size, because that way I had a better chance of sleeping through the night, at least sometimes.
I got home and tere were leaks only about once a week on the weeked, until I realized I was having a good realtionship with my stoma, taking care of it lovingly, and admireing the way it took care of me by really handling things well even if I ate nuts, salad, cherries and some other stuff that might normally cause problems. As soon as I acknoledged that I care about my stoma, the leaks stopped completely.
Anyway, it took me three months to even start feeling like myself again.
I think the operation is one of the greatest watersheds a person can go through. It effects your identity as a human being, and as a woman. The leaks basically start occuring because the stoma starts to shrink, but I also think there is an internal process also at work, in which we are rejecting the entire issue (and therefore have leaks) and then come to accept and take care, and that's when the system starts to work.
All the best,

Veteran Member

Date Joined Oct 2008
Total Posts : 938
   Posted 8/17/2011 11:03 PM (GMT -6)   
I've cried exactly once about my stoma, etc. since having my colectomy and it was the result of going through three appliance changes in the span of a few hours. This was just about a week ago and it really brought me to my knees. Leaks just take the confidence right out of you. It's an awful feeling. I will cast another vote for the Sure Seals. Even when a leak happens, I can catch it before it gets on my clothes, etc. and I have time to get home (or somewhere else appropriate) to be able to do a change. They have really helped my confidence, especially when running. I've run up to 8 miles now with Sure Seals and not a blip.

Hang in there!
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
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