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Something I'm happy about after three years of all that.....

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Posted 3/7/2013 4:27 PM (GMT 0)
I got the support of the German association for crohns and colitis plus the support of my GI at the research hospital to establish a regular monthly pouch meet-up. I had no idea it would be that easy. I even found a place to meet that's perfect - the upstairs library room of a restuarant. It's private and cushy and easily seats 25-30 people. I have no idea how many will come. The first meeting is end of April. I'm spreading word over the association's website, forums, intestinal clinics at hospitals. I have no idea how many people in Belrin have pouches. I do know that my wonderful surgeon had already created about 160 by the time is created mine, and he is only one of several surgeons in town who do pouches.

I'm terrifically exited, because I found something worthwhile to do with those three years of just suffering away to myself - it was not all for nothing! It will com to some good for other people. There has never been a meeting like this in Berlin so I am really psyched about it being exactly what people have been wishing for.

 

Posted 3/7/2013 8:56 PM (GMT 0)
Good for you! That's great news!!!
Posted 3/8/2013 1:33 AM (GMT 0)
B'Dereh- That's awesome. I can tell you really care about helping others to make sure they don't have to go though the things that you have. I think it's a great idea. Although I don't have crohns or colitis, I can definitely appreciate what you are doing as I am new to having an ostomy. Hopefully just for another month:)
Posted 3/8/2013 10:34 AM (GMT 0)

Larasmom and  Mossmi, Thanks so much.

 I'm also mainly doing it because I know I definitely real contact with other people who have pouches. That would have relieved some of the stress from the very beginning. I don't think though, that a monthly meeting is going to help people not to go through the hard bits, we all have to go through the hard bits, but for me it would have been easier if I I knew a few people in real life. This forum has been so fantastic for me, I've gotten 99% of my information and advice here. I just want to have it real life too, and it's hard to believe that there are probably several hundred people with pouches in Berlin without any way of talking to each other. I've read posts here from members involved in various marathons for people with ostomies and pouches, mainly fund-raising for disease research. Germany doesn't have that kind of philanthropy structure at all, things get funded in very different ways.

Mossmi, Are you waiting for take-down?

Posted 3/9/2013 12:16 AM (GMT 0)
This is fantastic! I know it feels good to have something constructive/helpful come out of your experiences.
Posted 3/9/2013 1:14 AM (GMT 0)
Good for you B'..hope you have a great turn out. And that maybe some "newbies" can gain from your vast knowledge! Best of luck on this endeavor :)
Posted 3/9/2013 2:18 AM (GMT 0)
Awesome news! Good luck I hope you have a huge turnout.
Posted 3/9/2013 11:10 PM (GMT 0)
Thank you everyone! (so far no one has responded...but I'll wait and see.)

Posted 3/10/2013 1:10 AM (GMT 0)
Good Luck...hopefully you will get some people to come. 

Coming onto these boards/forums where there is anonymity is a leap for some to begin with to even post and not just lurk.  Lurking is fine too...it's more important for people to have a resource to get information and some answers if they just don't feel comfortable yet with a support group face-to-face.

We have a monthly ostomy group in our community.  We have only been able to make 3 meetings due to other conflicts.  This last meeting was really great as my husband and I were able to help a few others who were confused, overwhelmed and nervous about their upcoming surgery.

There was a person there who was so down in the dumps a few months ago and very negative and despondent about the upcoming surgery.  I went to that meeting and my husband couldn't make it that day.  I came home telling him about it as I gave our telephone # to the person and spent quite a bit of time trying to help "make a difference".  We never got a call.  I was ELATED when that person was at the last meeting, had the surgery, adjusting so well and actually giving some advice to others even though the surgery wasn't all that long ago.  I felt so good seeing that complete about face and change in attitude.

I brought a tote with a lot of stuff not knowing what subjects may come up but had items on hand if needed.  As it turned out it became a bit of a "show and tell" and so well received.

If your first meeting is not well attended...type up a small note for your doctor's office to hopefully pass out.  A friend who has Sarcoidosis started a support group and did that with her pulmonologist's office and that was a good outreach to get people to come to the meetings.

Good Luck!

Posted 3/10/2013 12:20 PM (GMT 0)
UC wife - you can't imagine how much I appreciate those tips! The announcement was posted on the Crohns & colitis association (DCCV) website forum, in their monthly membership magazine (goes to over 20,000 people Germany-wide), my GI is posting the information all over the hospital GI Clinic, and there are 3 or 4 additional hospitals with GI clinics in town. So I probably won't have left anyone out in terms of information.

But I think the point you made about those who are not yet ready to communicate or to need communication about what they are going through - strikes me as being very real and I am taking it into my view. There is a big gap between lurking for information and going to a face-to-face meeting. So there might be a phase when few people show up and there are others who are aware that the meeting is available and won't be ready for it for months. The DCCV gave me a lot of support material about group-formation and group-moderation, and it says the minimum is six people. The first meeting is about 6 weeks away and I'm glad to have that much time to prepare, somehow, at least develop an idea of the best way to give form to the first meeting so that people feel it will be productive and helpful for them.

I am also finding I am driven to help and support other people, which, to be honest, is a new feeling (I would otherwise describe myself as too selfcentered :-)). I think that once you have been through something like living with illness and then several surgeries and whole lot of adjustment and learning, you really need to grow from it and turn the experience into something productive (the lemons to lemonade thing).
Regarding the person at your meeting who made a turnaround in feeling - I can remember a time in the beginning when I was so despondent that there was nothing anyone could do that was right for me and a lot of info may have been simply too overwhelming. I only wanted to weep, and naturally that is a phase that will have to end and give way to new thoughts.
The other night I was on the phone with a woman in another city about something I had bought from her on ebay, and somehow we got on to a few other subjects and from there she described symptoms she had been having on and off for 4 years that are so typical of the chronic inflammatory diseasese. Upshot is she will now make an appointment with a GI at a learning hospital nearby, but until she had finally layed the symtoms out on the table to another person on the phone, she was more or less in denial that something is not right. We were both quite astonished at how coincidences work and somehow stayed on the phone for 3 hours about illness and philosophy.
If you have any more insight about groups I'm very glad to read it here, many thanks!
Posted 3/10/2013 3:31 PM (GMT 0)
The very first meeting I sent the article to the leader about a boy's grandmother Mabel (I got the link on here I think) back in the fronteir/pioneer days. She had an ostomy that saved her life BUT....there were no ostomy supplies available. The trials and tribulations she went through and the "home made" devices to collect the matter makes you cringe. But at the same time the perserverance....necessity being the mother of invention....the will to survive and carry on is VERY inspirational.

As it turned out he forgot the article and didn't have his glasses so he asked me to read it...so I was the guest speaker that day as it turned out as there was no real formal agenda that day. So it was kind of good I had it. I read it slowly, paused and used some voice inflections here and there to drive some of the points of the article home. Needless to say if there were some in attendance feeling down it gave a different perspective and one of gratefullness of all the items out there to try to make your life living with an ostomy easier and better.

I could see from the expressions on people's faces (about 20 in attendance) that there was a kind of relief and gratitude that we are lucky to be living in the here and now with all the advances. I think that article certainly gave anyone who might be feeling sorry for themselves a whole different insight on just how much worse things could be.

Try and get a copy of that and run it off....that might be a good thing to read to the group and maybe keep on hand for future meetings as your group grows.

From the sound of it I think you will have a decent amount of people show up.
Posted 3/10/2013 4:24 PM (GMT 0)
I don't have any tips to offer on running a support group, but I just wanted to wish you the best of luck. I am nowhere ready to run a group of my own, but I think I understand the being driven to help and support other people, eg I have been considering what voluntary work I can do when I am fully recovered. As an introvert by temperament, I don't naturally incline towards reaching out towards other people, but I would like to give a little something back. Either to my local hospital or to an ostomy support association, or whatever.

I agree absolutely about not everybody being ready to communicate. Before I had surgery, I was a bit like that. I did not want to think about having a stoma too much and would not have gone to a support group. It wasn't until I had a definite date for surgery that I began to lift my head out of the sand - trying on a practice bag for the first time, for instance. (My mum wanted me to wear the bag continuously; I refused, saying I wanted to enjoy my last few days bag-free! <_<) Anyway, my point is I came around to things in my own time. Now I would go to a support group, join the Ileostomy Association, etc.

To add to something that Another UC Wife said: I too felt massively grateful after reading a short piece in a newsletter about folks in Moldova receiving ostomy bags via Ostomy Aid. Previously, many of them had resorted to DIY solutions, such as thin plastic bags, nappies and newspapers. Obviously, this did not work very well and such folks would tend to become isolated and depressed as a result. Reading about how their lives were improved due to proper ostomy bags and accessories was a genuine eye opener.

So yeah, there you have it - my tuppence :p
Posted 3/10/2013 5:45 PM (GMT 0)
Nicecup: just to clarify: I am introverted, self-centered, egocentric, etc., and "even" I want to make sure I put all that mental energy to something positive in the world. Maybe that's a form of egocentricity. Don't know. I just can't bare the idea of letting it all go to nothing. Point is, I don't think that taking the initiative for something you know to be important is such a matter of personality type, rather, that after an illness you/I/we need to ask ourselves how we have grown and developed from it. Yes, I feel blessed and enriched, and No way am I the victim of the weird logic running the world of genes and chromosomes. Maybe it forced me out of my own belly-button, too. Some good has to come out of it, or in other words, I'm the kid that jumps into the room piled high with SH-T because there has to be a pony or a puppy in there somewhere.

I think that to withdraw in an extreme way aftre the colectomy is completely normal, for a lot of people the first weeks and even months are about coping and often it requires reducing social contact,
and then come phases that grow you out of it into acceptance and real life and being who you are.

You doing ok now?
Posted 3/10/2013 7:29 PM (GMT 0)
Here is the article I was talking about.....

https://www.c3life.com/ostomy/community/story_view.aspx?id=114
Posted 3/11/2013 9:05 AM (GMT 0)
Hi UC wife, thank you for the link. I read the article some time ago when it was posted here. I will see when comes an appropritae time to bring it up in the pouch group, because the stoma days are over. Still it is important to reflect a moment about how lucky we are and how amazing is progress and advancement, because we now have these high-tech stoma bags (which admittedly pose problems but compared with having nothing at all ....?9 and that medicine is so advanced that surgeons can create pouches that do indeed work (admittedly, you have to wait 6 months before the chaos lets up).
Articles like that put things in a very helpful perspective.

By the way, I'd still have to find someone to translate the text into German!
Posted 3/11/2013 1:04 PM (GMT 0)
Sorry -- I am forgetting and not paying attention that you have a jpouch...but yes maybe at some point that article might be of service if and when the time is right to use it for discussion purposes. When a discussion starts it's amazing the different directions input and opinions create.

Plus that all in attendance at the group would not be bi-lingual so translating various documents would be needed. Maybe as time goes on it would be great if there is a person or two in the group that can offer some services to assist you which will take some pressure off you but also get them involved and make them an integral part of the overall effort of the group.

It's great to get a group started but also nice when you have a few people you can count on down the road to lend a hand too.

Keep us all posted.
Posted 3/11/2013 5:21 PM (GMT 0)
Thanks UC wife,
I now have one response from a woman half-way across the country who wants to come and asked for a cheap hotel recommendation. Wow. I just hope more people respond!
The response from hospital clinics has also been great, that is, they are more than happy to inform pouch and stoma patients that the pouch meeting is in formation.
I think there isn't really a problem with English language material. I could actually translate anything aloud. And the story about Mabel is easy to retell after having read it once.
After reading the response I got today, it made me think about while it's absurd and unfair of nature that people get diseases, the diseases hit in an extremely democratic and neutral way: the rich and the poor, the highly educated and the hardly literate, and everyone else inbetween. And so the group is going to be very mixed and I hope everyone can be open to people from different backgrounds.
Posted 3/11/2013 11:37 PM (GMT 0)
Wow..that's a long way to come for a meeting.

Plus there are some very good articles on the home page of healing well here that deal with illness, coping etc.

Maybe you can get a doctor to be a guest speaker when you get up and running.

We have 2 WOCN's in this area that try to make the meetings to be of assistance too.

Posted 3/11/2013 11:44 PM (GMT 0)

B'Dereh said...
Nicecup: just to clarify: I am introverted, self-centered, egocentric, etc., and "even" I want to make sure I put all that mental energy to something positive in the world. Maybe that's a form of egocentricity. Don't know. I just can't bare the idea of letting it all go to nothing. Point is, I don't think that taking the initiative for something you know to be important is such a matter of personality type, rather, that after an illness you/I/we need to ask ourselves how we have grown and developed from it. Yes, I feel blessed and enriched, and No way am I the victim of the weird logic running the world of genes and chromosomes. Maybe it forced me out of my own belly-button, too. Some good has to come out of it, or in other words, I'm the kid that jumps into the room piled high with SH-T because there has to be a pony or a puppy in there somewhere.

I think that to withdraw in an extreme way aftre the colectomy is completely normal, for a lot of people the first weeks and even months are about coping and often it requires reducing social contact,
and then come phases that grow you out of it into acceptance and real life and being who you are.

You doing ok now?

Maybe by saying I was an introvert I should've clarified more. I tend towards the extreme end of being an introvert, but that doesn't mean I think introverts in general are incapable of group activity or leadership: far from it. A well-adjusted introvert can socially interact as well as any extravert. I wouldn't let being an introvert put me off doing anything I wanted to do. Incidentally, in my case the introversion has been life-long, so I certainly cannot blame the ileostomy or even the Crohn's for being this way.

I'm doing okay, thanks. Just very tired and a bit low, so I think this shall be my last reply of the night... ¬_¬

Glad that things seem to be getting underway with the group. A single attendee is better than none :p
Posted 3/11/2013 11:52 PM (GMT 0)
B'Dereh, that's great that you're doing this. I go to an ostomy group at a hospital, and find it quite beneficial to see people in person. It's interesting, because there are some things we discuss online that we never discuss there (e.g. sex), but there are also things that are easier to talk about in person with all the inflection and non-verbal cues. At a very visceral level, it's meaningful to see a wide variety of real people who have ostomy bags, who could be anyone you see anywhere.

My group is very diverse in many ways -- age, gender, race, occupation, reason for surgery, etc. I feel like one good thing about going through what I did is that I can connect genuinely and deeply with all these different folks because we've been through similar medical things. Makes my world bigger. It is true that disease is one of the more democratic things in the world (depends on which disease, though...)

Also, not sure how it is in Germany, but I've been surprised at how many people there are around who are uncomfortable on the internet -- some are older, some don't speak English so well, some just say they like to talk in person not by computer. I find that I know tons of stuff from participating in this forum that I can pass on to a lot of people who have never heard of any of it (sure seals should pay me a commission for how many people I've introduced to them, for example).

My group does include two social workers and a nurse, and I think it's very helpful to have people there who know the medical stuff and who know how to facilitate groups. We have had some people with separate psychiatric issues, and I've been glad that the social workers were there to help keep the group from getting derailed.

One thing that's been eye opening for me is how different it is emotionally to have the surgery for IBD than for cancer. I'm not sure if you're reaching out to people w/cancer or how many people get j pouches for cancer, but my group has more people w/cancer in in than with IBD, and in many ways it's so much harder for them..... I was sick for years, and surgery made me better, whereas they were often fine, and then they had to have surgery, chemo, radiation, a bag etc all at once, often with their life in danger. I think our group has saved lives, as people come trying to decide whether to have surgery, often thinking a bag is worse than death. I sometimes think that some of us with IBD can be especially helpful just about the fact of the bag, as we didn't have to deal w/chemo, surprise etc..... not sure how any of this would be for a group w/pouches....

Keep us posted. That's very exciting that someone wants to travel.... can you get a block discount for rooms in Germany?
Posted 3/12/2013 11:15 AM (GMT 0)
Blueglass, great to hear from you!
I know what you mean about deserving commission from those companies!

The group is for pouch interests, people who have a pouch, people who are about to have a colectomy, people who are trying to decide if they want to keep their stoma or get a pouch, and/or the parents of either. So it's not about IBD itself. People dealing with cancer are obviously part of the definition.
What is troubling me about Germany is that the tendency really is not to differenciate but to lump together. Just to illulstrate, the DCCV (German Crohns and Colitis Association) has an online forum that is structured lilke this:
IBD's (Medical Issues) ‹ Comorbitities, PSC, Pouch and Stoma

I think that Pouch and Stoma should really get its own level equal to IBD's.
The experience changes at every phase, the person is changed/challenged/enriched in different ways at different stages.
The whole point being to meet people who have gone down the same road as you, instead of feeling alone at the level where no one you know had to go through any of it at all.

I have not thought about needing a social worker there in case someone gets imbalanced. I think I'll wait and see until at least the first meeting, because I think the group should define its interests as a group and the naturally we can invite nurses and doctors to come and talk to us.
Do keep the ideas here flowing! I'm gotten most of my insights in exchanges here, even about the commplications that didn't pertain to me.
Posted 3/12/2013 12:24 PM (GMT 0)
Our group has the regular meeting and we listen to whatever is on the agenda and any guest speakers they may be able to obtain. Then it is suggested to break up into the different groups..those with ostomies, colostomies and urostomies.

So when your group gets established and you can identify if something like that may be good to also do then the different groups can get into some of the finer details of what specifically pertains to them.

Also at this last meeting the person running the meeting asked if people would like to stand and say their first name, the type of ostomy they have, how long they have had it and if there is something they might like to say. Since the group is on the small side and even if someone has problems with public speaking it wasn't a problem because the overall feeling and reason for being there in the first place is for help and guidance so that was well received.

Also if you don't use the UOAA site even though you have a pouch you may find some helpful info there to use too.

I typed out the web address for Healing Well and the UOAA and very easy simple steps on how to navigate to get to the different forums once you log onto the home site. Many people are not that comfortable with the internet as mentioned and this really helped them since I laid it out step by step on what to type in and where to click etc.  I did this in a handout in a larger font....our group is comprised mainly of seniors...lol.
Posted 3/12/2013 3:16 PM (GMT 0)
I have to wait and see who comes, how many (I hope more than the one woman from another city!) and what everyone's needs are. I see a mix of introductions, speakers on topics (whatever the group wants more information about), member's own presentations to the group (I also don't mind sharing moderation), breaking up into smaller groups, people presenting individual situations/problems and getting feedback and advice, as well as ordering food and just eating and relaxing together. (For a lot of people that will probably be one allowed exception to their personal rules about no eating after 6 pm etc.)
I have material from the DCCV and news about formal pouch weekends in other Germany cities, where there seems to be much more organized pouch activity than in Berlin.
I expect the age group will be well mixed and hope that if the 22 year-olds come they won't get bored when most people are over 35.
Posted 3/12/2013 8:34 PM (GMT 0)
We also do introductions .... usually name, what type of surgery you had or are considering, why the surgery (if you're comfortable with it), and when it happened or is happening. Then we do check ins, and that usually takes the whole group (90 minutes). Often it's the people in most need who talk the most..... we had one meeting where it was a small number of people, all of whom had surgery a while ago, and that was kind of nice to talk about longer term issues about having been so sick etc.

I did forget to mention that we have people with j pouches too.... mostly who came when they had the bag, but then stick around some because they've connected. We've also had people w/pouches thinking of going back to ostomies.

I know that for a while one hospital had an ostomy group that was under IBD as you describe..... there are different ways to categorize....
Posted 3/12/2013 10:33 PM (GMT 0)
Blueglass, what are check-ins?
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