Where do you go for support?

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SupportiveMom

SupportiveMom

Joined
Mar 17, 2013
Messages
1,337
Hey all, I've been feeling frustrated since my kid was diagnosed in September of 2012. I live in a major city, Toronto (no jokes about our mayor please, I know he stinks) and there are a lot of people diagnosed with Crohn's in this city. I am sure many are children. It took me a year to find a support group for my teen, but we have yet to go to one meeting as November's meeting was an info night, and they don't have December meetings and it looks like January is cancelled.

All I read is how much people with crohns need support and talk but I haven't found anyone to talk to in my situation and I am sure there are many (Hello caregivers need support too!). Forums are great, but it is hard to know how to establish a connection with or really understand someones story.

Have I just stumbled upon something that is lacking in the IBD community, places to go for support, or am I just not informed? What about those of you that don't live in a major city, where do you go/ what do you do for support? I am already connected with CCFC, SickKids. I can't be the only one that feels alone in this disease. How do you cope?
 
I come here! This Forum, particularly the parents section, is full of incredibly supportive people. Over time you learn their stories and find yourself checking in to see how Billy's doing or how Jane's infusion went.

I'm not sure I would have made it through the last year without the wonderful support and knowledge of this group.

We have a teen support group locally too, but my son has no interest at all. He's more interested in the stories I tell him about the kids here. I think he just needs to know there are other kids like him.

Welcome to the group!
 
No support groups around here. Jack gets support through Camp Oasis and the friends he has made there he keeps in contact with throughout the year. He was busy texting them throughout his infusion yesterday and like Mehita he always asks about the other kids from here.
 
I'm looking for parent support too. I remember when my kids were young there were "Mommy & Me" classes. You got tips on breastfeeding, sleeping, growth and development. Lots of times I don't know if what my kid is experiencing is normal, is it time to change doctors, how often should you get a colonoscopy... wish there was a place like that. Are message boards where that stuff happens now?
 
Unfortunately, I think so. There may be a support group that coincides with the teen/kid groups (I think we have one?), but I've never gone because people here usually have answers or advice. It's kind of the way of the world these days, I think - all electronic.

You might find here too that someone has a similar story or you just kind of click and this can lead to sharing emails or becoming Facebook friends.
 
YA, no support groups here.
The normal reaction when I tell people is, I didn't know kids could get that.
So most of the time if I need support I come here.
I will often tell the hubby about different kids on here and what they take and does it work.
I'm apart of a few forums and I have to say my heart is still with this one.:rosette2:
 
I spend most of my time on the Healingwell crohns forum but not many parents there. Great wealth of knowledge. When I first joined here it wasn't that active so I think healingwell just stuck. Seems more active now so I guess you all will be seeing me more often!
 
I come here too!! I do wish that I had someone local. The support group I found seems to be adults (not parents of kids) and other parents I have met have been at this for the 5+ years. With that they are very sympathetic but not in my same situation. I check in here all the time (even if I don't post) and I feel like there is a whole group of us who have kids that are in that 12-14 age group and are 1-2 years into this. Maybe we need a sub-group...although I would love to be with all of you face to face, I am grateful to have found this site.
As far as LJ, he has no interest in going to camp oasis, or going to a support group. Do any of your kids go on the teen group here?
 
No support group in or near my city that I know of. I was starving for one back when my son first had his DX. I felt alone too. That's when I stumbled onto this forum. I would love to also have a group that met locally to see people face to face and actually talk. I've always wanted one for my son, but like Mehita said, my son seems to have no interest. He wants to forget he has the disease most days. But I think he doesn't know the benefit of having a friend that has what he has because its never happened. I also tell him about kids on here. It makes him realize he's not alone. He goes to a middle school with 3 grades... about 400 some kids. He's it with crohns....... he's mentioned before, "Why am I the only one that has this". So I tell him about all the kids on here- And surprisingly most are his age too.
 
My daughter has connected in social media some kids that have either chronic illnesses or crohns. I'm in Canada, no Camp Oasis here. She is craving some face to face with fellow crohnies and I am too. I have definitely felt lost in all this. Seems I'm not alone. What we need is a live chat or something... like a support group in cyberspace.
 
Just adding that this is my place! I have made some great friends here...even arranged one of my vacations so I could take a side trip to spend time with one of them. I have cried tears for the kids here and gotten chills when I read a good report. And as much as my daughter has been doing VERY well for over a year I still come on to check in on everyone.

I think it is true. Electronic connections are the way of the world. Our childrens hospital has a group for the kids. My daughter wasn't interested. She even has a girl in her church youth group (and our youth group is small) who has UC and they haven't said one word to each other about it. They were dx'd at the same time and both inpatient at the same time (different hospitals) yet not one word. I think kids deal with things better than we do and they just want to be normal. We also thought she was the only one in her school with IBD. Until we walked into infusion and there was a boy from her school there. They looked at each other like "you to?" You would be surprised who is out there but laying low.
 
Hi Supportivemom, I'm also from Toronto :) My 12 year old dd has Ulcerative Colitis. I come here for support. I haven't found a group for her, she's too young for the teen group. I wish we had something like camp Oasis here too. My daughter would love to be able to talk to other kids who could relate.
 
Can your GI suggest anything? We are with our local Childrens hospital and my kid has seen the social worker there. Plus her dietician will be getting her into a group just for kids. Might be worth asking.
 
I live in a rural area so a local support group for me is a long lost dream. {sigh}

Anyway, that is why I turned to the web and found this site. :) It has been a godsend for me over the years but I do understand the need that lingers for real life contact. I have made very good friends from this site and maintain a deeper level of contact through Facebook and email. Who knows, one day we may actually meet!

As to live chat, there is a chat function on Crohn’s Forum. Being that most of you are from US/Canada you could start a thread in the members only section titled Parent’s live chat and arrange a day and time that you can be on at the same time as others. You may even find it useful to make it a set day and time each week.

Dusty. xxx
 
I think there is a group about 40 mins from me, but from what I gather they tend to be more fundraising - I could be wrong, but have never bothered.
I come here!! The parents (and kiddies of course) on here are fantastic and you do get to know them and learn their stories.
 
Hey Devynnsmom my daughter is 13, would love the chat too. She have a cell phone or email address? Nice to see another Torontonian here. I will try to figure out how to send a private message to you so our kids can connect.
 
I think a live chat would be a great idea! Something that's done maybe monthly at first and if enough people want to do it we could do it more often like weekly. I love the IBD round tables Frank G. Does with guest speakers but this would be a more active way for everyone to connect. Anyone else interested in a monthly live chat?
 
Hi SupportiveMom,

I, too, have found that this forum has been amazing for me! I knew nothing about crohns when my son was diagnosed so the knowledge I've gained and all the virtual hands that held mine through tough times have been invaluable!

This is the only forum I've ever joined so I really didn't know what to expect but I don't think I really expected other forum members to become real friends but, on here, I've found tons! And, over time, you will also get to know and become part of everyone's concerns, ups and downs, who's graduating, who's going on vacation, who's having a problem now, who's feeling better after a treatment, etc. :)

I'd be interested in a live chat... as long as someone can help me figure out the tech side of it! :ybatty:

Also, I'm in Toronto... my son is older than your daughter but, he was also diagnosed at sick kids and was there for approx 1.5 years before transferring to an adult GI. If you'd like to get together sometime, PM me and we can try to arrange something. :)
 
No support here either. We do belong to NACC [ national association of crohns and colitis ] which has a sub family group. We do odd days out with these which is good to meet with other parents. This only happens once or twice a year. But on the whole I am on my own with it. Groups like this are fantastic for help and advice, and for realising you aren't on your own. But it would be nice to have groups nearby where we could meet and give each other support. My son cannot be the only child in this area with crohns.
 
Same here. there are many support groups for every disease you can think. But not for Crohn's. This forum has been my mind saver. I thought about starting one in my city but I have not.
 
Tesscorm - I am a techie, but not familiar with this forum much. I see you are a moderator. Does this forum have live chat capabilities? I will start checking the insides & outs but I am sure any live chat from the form would need a moderator or something. I will send you a private message too. Love to chat!
 
There is a chat feature if you look at the buttons along the top you will see new posts, search, settings, chat, etc. It is a site wide chat though so I don't know about a separate chat room for those. Jennifer any idea?
 
Jmrogers4 said:
There is a chat feature if you look at the buttons along the top you will see new posts, search, settings, chat, etc. It is a site wide chat though so I don't know about a separate chat room for those. Jennifer any idea?
Click to expand...

There are the Local Support Groups but it basically works like any other thread. It's meant for getting to know who's in your area and then setting a time to meet up in person if you want.

The live chat on the forum is for the whole forum but for some reason it hasn't been active lately. I think a lot of people forget that it's even there yet it could also be because it doesn't have any sound. Someone could have the chat open on one tab but then go to look through the forum and forget to check back and see if someone came on the live chat. There's no sound or visual notification so you constantly have to go back and check to see if someone replied. We're still working on getting that fixed. :)

We've had a lot of people in chat before and I think it's a lot of fun. Sometimes new people come in and ask questions and that's ok. They usually join in the conversation after their questions are answered.
 
I checked out the live chat... didn't seem to be active. I think it is a great tool. For those that have said they are interested, lets do a chat in the live chat on Thursday January 16 at 8pm EST. I will make a separate post too. We can as a group decide a best time/date scenario but I think it will help to get this started. Thanks!
 

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