New and alone in this...

[CrohnsChicago]

So I never did a formal introduction on this site. I've been here for a few short weeks now. Before I start I want to say thank you to those that have seen me posting online and taken the time to respond. This site seems like it has good potential.

I spent the last few years randomly getting sick and diagnosed with medical "mysteries". After poking and prodding, this year all of my symptoms finally came together...and lead to the colonoscopy which revealed I have crohn's disease.

Specifically I was diagnosed with moderate-to-severe crohn's-colitis. My doctor explained that my entire colon is covered in ulcers and granulomas were spotted in my biopsy.

I am only about 4 months into my diagnosis and trying to learn as I go along. In these 4 months I have had about 2 months of calm until my most recent flare which I am trying to get under control currently.

What I have learned is that there is SO much information out there about symptoms, treatments (both traditional and alternative) and lifestyle adjustments. Everything is so confusing because it is not the most "linear" disease. And what I have realized is that I am COMPLETELY alone in this. I have managed to be open to family/friends about my disease but the reality is they just don't get it and don't have much to offer in terms of support.

I am also 29 years old and a social/outgoing person so this disease both sets me back some days and others it forces me to "fake-it" more often than I have the honest energy to do so.

I don't know anyone else in my life with IBD so I have no one to talk to readily about it. I am thankful for this online site which has been helpful as I have tested it out these past few weeks but we all know nothing beats a little human contact as well.

Surprisingly, meetups in my city don't exist for Crohn's/IBD, nor do other local support groups (with the exception of a CCFA chapter which RARELY meets and no one bothers to return my messages about participation thus I don't know how comfortable I am with participating). University of Chicago is as good as it gets for Crohn's but their events all appear to be very science/medicine-focused and don't provide much in the form of support from people who can relate.

Is it just that people out there have it, but are just too embarrassed to be open enough face-to-face with others? I know I get embarrassed. After trying to explain it to others, I think I have come to the conclusion that I don't care to talk about it anymore to those around me because they will just minimize the situation due to lack of understanding.

Just feeling a bit isolated about the whole thing in addition to making sense of the disease, treatments and management. I try not to get discouraged by it since I have experienced days of better health than I have had in a few years since I started treatment, but those days when I don't feel well combined with the realization of the above statements leads to a few discouraging and lonely days like today.

 

[Jennifer]

Honestly the one thing that is linear about this disease is that feeling of loneliness. I've seen it mentioned countless times on the forum and have dealt with it myself even though one of my sisters also has Crohn's but she has chosen not to treat it at all and judges my forms of treatment.

I don't seek out actual support groups for a couple of reasons. One, I'm in remission and am not really in major need of help disease wise. Two, everyone is different. Meaning, look at my sister, she has Crohn's too and look at her attitude. Why would I want to be around people who don't want to help themselves? Sure you may say that not everyone is that way and someone like that probably wouldn't even join a local support group. Yet people like that actually do go online and join forums like this one. I'm able to shrug it off on here and do my best not to judge and the majority of people on here are really nice and do want to help others but I would never go out of my way to be put down in person by complete strangers.

Yet since I have that desire to help others and that desire to protect myself, I choose the online route of giving others support and get some in return when needed. Plus there's really no obligation online. You can come and go when you please. There's a lot less pressure.

I guess my point was the none of us on this forum are actually alone because we're all alone in the real world. A bit bitter sweet. Sorry.

Here's a formal welcome to the forum!

 

[CrohnsChicago]

Yeah, overall I think in-person support groups are hit or miss just because you don't know what types of individuals you are going to be surrounded by until you get there.

But I am also the type of person that needs that human connection when I am feeling down/ill not necessarily just to vent, but to receive encouragement and assistance/tips as well since I am more of a problem-solver when it comes to my personal issues. And it's validating for me to know there are real life people that get what I'm going through.

I have been to a few support groups for my anxiety in the past and I can say that half of them were decent, one was really good and gave me what I was hoping for and the others I left after two meetings because of the people involved. The ones I didn't like were the ones where people were so attached to their anxiety that they didn't even allow themselves opportunities to try and cope. I understood what they were going through, but I was also bothered at times by it because I didn't want to just linger in suffering...I was eager to find peace. I fared better with groups where people were more action-oriented.

But you'll never know until you try.

And yes, it IS very bitter-sweet. And I thank you for your responses

 

[Ckt]

Crohnschicago..I'm surprised really that there are no support groups in Chicago especially with the ibd clinic at the university of Chicago. I thought that only happened in small cities like mine in Kentucky! I'm much like you..I'm very social and the face to face support would be nice. I attend a 12 step group for addiction and have for years. It has really fed my spirit to share with others the rough spots in life but the triumphs too.
Have you looked on the ccfa site?i think they have a link to local support groups. Although medical info is great and valuable to me, I can usually find that online doing research. What I need is talking to others on how they deal with this on a daily basis.
I struggle with loneliness and feeling a bit out of step with having this in the world. I am posting a lot on this forum because it's really the only place I can talk about IBD with people who are in the same boat. My family and friends are really incredibly supportive and loving but trying to explain what it's like to go to the bathroom 20 times a day, having consequences after eating g what most would consider a normal meal, and handling pain every day is beyond their understanding bless them!
I'm coming to Chicago to the IBD clinic in a bit over a week to seek another opinion.i figure I would go to great lengths for my well being and that's a good thing,
To be honest, I'd even like to meet up with others socially with IBD! Of course, it would probably need to be in a venue with several bathrooms!LOL!
I would say if you know this would help you, try and find a local ccfa group/ I can't imagine there wouldn't be one around you although I may be wrong.

 

[CrohnsChicago]

The CCFA group meets at Rush University in Chicago but only meets once every 2 MONTHS (really???)...not much help there. And that's the group that doesn't return my phone calls and e-mails so I am not certain I want to be involved in that one due to their lack of organization and accessibility.

HOWEVER, there's a patient's forum in October in downtown Chicago hosted by the Universty of Chicago IBD clinic that I am attending. Hopefully I can at least introduce myself to people there...

 

[AuntieEm]

hope you find one that is a good fit for you chicago.