Ostomates (ileostomy, colostomy, and urostomy)

Qreq

Hi. An ostomate is a person who has had one of the three ostomy surgeries mentioned in the title. A relative of mine is coping with life after an ileostomy. We attend volunteer-run meetings so that she can meet others in similar situations and lean on each other. I thought it might be useful to make a thread for people who've had one the ops and may need to chat about their stoma experiences. You can get things off your chest if you're having a bad day, boast when you have a good run, or share useful tips and resources (keeping in mind medical advice is not allowed by rules of the website).

I created this thread because of the need I see for support locally, and because of the supportive Crohn's Disease thread (worth checking out) which has a similar goal, however, the surgeries can be necessitated by things like types of cancer, ulcerative colitis, and diverticulitis as well as Crohn's, so I thought it would be useful to help ostomates find each other in one place regardless of the cause. It doesn't matter whether your stoma is a week old or decades old, feel free to talk about your experiences or ask if anyone can offer non-medical advice.

It's my understanding that there are support groups in the following areas if you'd like to visit one: Cork, Longford/Mullingar, Offaly, Sligo, and Waterford (people from Tipperary and Wexford also attend there). Support groups are currently being established in Limerick (meeting on Nov. 29th I think) and Tullamore. Some people in Wexford and Dublin are considering forming groups.

How are you getting on?

Qreq

There's a new procedure available which does away with the need to wear a stoma bag constantly. It's called TIES (Transcutaneous Implant Evacuation System). It involves implanting a circular receiver around the stoma to which, after a period of adjustment, a lid can be attached between toilet visits. The company says it "provides a permanent, patient-controlled continent stoma that eliminates the need to constantly wear a bag after removal of the large intestine."

My understanding is that after healing and during the period of adjustment, a bag is worn as usual, however it's interspersed with periods of having the lid attached without a bag. Over time, these stoppages cause an intentional ballooning of the intestine inside the body making enough of a reservoir that wearing an external bag becomes optional because you essentially have made an internal bag out of the remaining intestine. At that point, you can wear the lid when going about your day, and when it's time to go to the toilet, you attach a sleeve around the stoma and remove the lid, allowing your stoma to empty into the loo via the sleeve. Then reattach the lid and resume your bagless day.

The company is OstomyCure. Here's their site and the pdf I summarised.

I think it would be a welcome option for many if it works as described. Any thoughts?

Qreq

There's a support group meeting in Waterford at the Solas Centre on Williamstown Road. March 1st, 7pm. Interested ostomates and their famiily/friends/moral support are welcome to attend.

Edit:
The previously announced talk about a new treatment has been postponed until later in the year.

tizer

I am part of the Sligo Stoma Support Group which is established since 2000. We meet on the last Tuesday of every month and anyone is welcome to attend. We are having an Information Afternoon in The Bush Hotel, Carrick on Shannon, Leitrim this Sunday 26th February 2pm to 4.30pm. Most of the Ostomy companies will have stands displaying their products and we have some guest speakers including Susan Moore, Stoma Care Nurse in Sligo University Hospital. Please come along and spread the word. If you need any further info let me know.

Qreq

There's an online survey being carried out by Ulster University for ileostomates in Ireland (south and north), and Britain. They are researching a number of potential sensors to use as early warning systems for pouch leakages. The survey takes about 10 minutes and mostly involves selecting answers to multiple choice questions about your stoma and leakage experiences. It's anonymous; you will not be asked for your name nor contact information.

Why not take part and help inform the researchers who might in return make a helpful early warning leakage gadget?

Links:

Ileostomy Association notice about the survey.

An informational PDF for participants.

Begin the 10 minute survey.

Totofan99

I've only just spotted this thread now. And I'm kinda disappointed that there isn't more activity on it. I have an ileostomy since August 2015. Ulcerative colitis resulted in me having to get a total colectomy and I have another surgery due this year to make my ileostomy permanent. I'm actually delighted with my stoma because I've got my life back! I'm interested in finding out more about those support groups. Particularly ones in either Cork or Galway.

Qreq

Totofan99 wrote: »

I'm interested in finding out more about those support groups. Particularly ones in either Cork or Galway.

Hi Toto. The Cork support group has been going since 1997. They meet on the first Saturday of each month. I'll pm you the phone number of a contact there if you want to enquire more about it.

I don't know of a Galway group, however, the Limerick group is halfway between the two cities you asked about so maybe that would be handier. I believe they began meeting in November last year. You can ring or email the secretary of Ileostomy Association Ireland to get the details of the Limerick group or ask for groups nearest your town.

All the support groups (that I know of) got started because the charity "Ileostomy Association" (iasupport.org) were instrumental in founding them. People with colostomies and internal pouches are also officially under IA's purview. After IA gets a group together a couple of times, the groups are then run by the local members who attend, meaning decisions are entirely self-directed. IA then cedes direct local control, however they remain available to ostomates and internal pouchers for questions and resources whether you are in a group or not.

If there's no group reasonably near you, talk to IA Ireland about setting one up in your area.

Like you, Toto, I wish some more boardies got involved in this thread; hopefully it will grow over time. It's great to hear you are happy with your stoma giving you back your life.

There are a significant number of people for whom the change is psychologically difficult to accept. I encourage everyone to talk about it with people you trust, seek out a support group to meet others in a similar situation, and/or see a therapist (your GP can refer you if you don't know one). Help IS available, everybody.

Totofan99

Thanks so much for the info. I can understand how it could be very difficult for some people so it's great that these groups exist!

camroc76

Just wanted to say hello ! Fellow ostomate here !....that TIES system is interesting.

Grievec

Hiya I've just come across this thread and was wondering if you could help. My mum has had a colostomy bag for past 7years and is struggling to accept it. I suggested a support group but I can't find information on one in cork. Can you help??

Qreq

Grievec wrote: »

Hiya I've just come across this thread and was wondering if you could help. My mum has had a colostomy bag for past 7years and is struggling to accept it. I suggested a support group but I can't find information on one in cork. Can you help??

Hi Grievec. I've private messaged you a contact phone number for the Cork support group. I believe they still meet on the first Saturday of the month, so although you have a little wait to meet someone, don't hesitate to have your mother ring that number tomorrow. My family member found it a great relief to chat to someone who "gets it".

That group is one of a few around the country that are affiliated with Ileostomy Association (IA) of Ireland and Britain. They support ileostomates, colostomates like your mother, and also people with internal pouches. You can read iasupport.org to see the kind of supports they offer. Contact the secretary of IA ireland if you're interested in joining. IA Ireland have a quarterly little magazine which will be posted out to members next week. Depending on your mother's ability to travel, she might like to attend the national IA meeting in Dublin in October. There, she'll meet ostomates from the various regional groups around the country, and there's usually a few stoma-care companies or services advertising their wares, a couple of talks by someone of interest, and a question and answer session where attendees can ask stuff. Those national meetings happen twice a year.

In the meantime, if your mother is feeling isolated by having the bag, show her some of the videos on youtube that result from a search for "ostomy bag". She'll get to see other people showing their bag and stoma and talking about stuff.

You mentioned it's been seven years. Your mother can still make contact with the public stoma care nurse for advice. There's no time limit on talking to her. If there's a major depression or body image problem, talking to a therapist can be a great help too. If there's no rush on that, maybe meeting the fellow ostomates in the support group will ease these feelings somewhat.

There are a number of ostomy product suppliers in Ireland, B.Braun, Coloplast, Eakin, Hollister, Opus Healthcare, Salts. If your mother's current equipment doesn't appear to work reliably, there are plenty of options out there. Many of these companies will send free samples to you because if their product works for you, they'll have a customer for years. Check their websites and ask for samples.

While not always necessary, some people find clothing or accessories (like a hernia band around the belly) specifically designed for ostomates to be helpful. Search the websites of Comfizz, OstomySecrets, SupportX, Vanilla Blush, and the White Rose Collection for more.

Qreq

Location: Ashling Hotel, Dublin.
Date: October 14th (Saturday).
Time: Noon until 4.30pm.

Ileostomates, colostomates, and internal pouch users from around the country are invited to attend the twice yearly national Ileostomy Association meeting in Ashling Hotel, Dublin. Various stoma-care product companies will have stalls/tables presenting their pouches and care products from noon until 2pm. There are often free samples, stuff available to buy, and opportunities to sign up for free advice services at these events. Those companies will likely pack away their widgets during the next segment, so come early to avoid missing out. From 2:15pm - 4:30pm, there's usually one or more relevant talks given to the seated attendees, and a Q&A session.

Ostomates and anyone they bring as moral support are welcome to attend. Admission is free.

You need not struggle alone:
If you can't attend, always remember that besides the few regional public stoma care nurses (SCNs), there are a number of free advisory services in Ireland staffed by SCNs attached to the various pouch companies. Informal support groups exist too. Help is available, just reach out.

LegacyUser

Can u send details of Cork support group?

Thanks

Heebie

Hello,
There doesn't seem to have been any activity here in a while.

I'm a "recovered" stomate. I had a colostomy for 8 months, then 8 more months healing up after the reversal. I have 35mm opening bags, around 40 of them, a bunch of seals, adhesive remover, some belts for holding bags in position, and two "Ostomy Armour" devices, along with some of their "wicks" and some other felt items for controlling leaks.

I'm wondering if there's anyplace I can donate these supplies. The Ostomy Armor set was a godsend to me. (https://www.ostomyarmor.com/product/heavy-duty-ostomy-belt/ )

If these are things that someone can use, I'll gladly gift them, and provide usage tips on the ostomy armour gear. (I went from 4-5 leaks a week to 4-5 leaks in 7 months with it... stuff works)

Regarding Ileostomy, I have a permanent one since 2016, and if anybody has to undergo a total colectomy and end ileostomy I am willing to share my experiences. I had Ulcerative Colitis for years and quite honestly the surgery has restored my quality of life.

gundry

Stoma Support Ireland Facebook Page.

gundry

Hi.

We have a support group Facebook page for all our fellow ostomates in Ireland.

https://www.facebook.com/groups/3170460386526044/?ref=share