Support groups suck

…or so I thought.

I mean, honestly, the idea of attending a “support group” just sounds, well, not fun.

Attending a Crohn’s and ulcerative colitis support group never really crossed my mind as I was growing up, but when I knew that I was going to move forward with the surgery to get an ileostomy, I felt the need to find other people who had been through the same thing. Dealing with health issues can feel very lonely. I lived with everything that comes along with Crohn’s disease for a long time all by myself. I think I sort of got used to the loneliness. But when I knew I was going to have an ostomy, I really felt that loneliness again and wanted to find someone to talk to about it.

ostomy association support group stephanie hughes stolen colon ileostomy colostomy urostomy crohn's colitis blog
So I decided to try out the local ostomy support group. My husband and I went to a group that was meeting just a few days before my surgery. I’m not going to lie, we walked in and saw only people over the age of 65 and we got a little nervous. At first I think we hoped we were in the wrong place, but just stood in the back for a minute contemplating leaving. But then a girl about my age came up to us and introduced herself. She had gotten an ileostomy the year prior, also due to Crohn’s disease. At that point, I felt so much better. Even being in a room where I was one of the few even from my generation, knowing there was someone else there who could understand and was going through some very similar things, made me feel comfortable.

It ended up being a great meeting and since then, I have met some wonderful other people, some my age and some not,  who have become good friends from that group. I found that I really enjoyed getting to know to know those a little outside of my age group. They are a fun and interesting group and many of them have had an ostomy for decades and have good advice, or at the least can tell you from experience how far we have come in ostomy care!

ostomy association support group stephanie hughes stolen colon ileostomy colostomy urostomy crohn's colitis blogYes, there are times when I feel a little outside of the group and may run out of things that we have in common to talk about, but it’s also great to see these people living good lives after going through their own surgeries. I also think back to that meeting last year and know I probably would have walked out that door if that girl hadn’t come up to speak to us and I would have missed out on a lot and probably would have felt alone for a much longer time. That’s another part of the reason that I kept going back. I hope I can be that person for someone else who is new and scared comes in and feels like an outsider.

I spent 13 years not really talking about the things that I have dealt with. I was never ashamed or tried to hide it, but I didn’t usually bring it up unless someone asked. Since having my surgery, I have attended both this and a Crohn’s and ulcerative colitis group and have reached out to people online and been more open with the people in my life about it and I have found what an amazing difference it has made. Having others out there who you can talk to and know that they understand what you are going through has been a real blessing for me.

If anyone asks me now for advice for someone newly diagnosed, I always say to find some other people who can relate. I feel like a giant weight has been taken off of my shoulder and I feel like I am no longer going through this all alone. I have a great family out there who I know will always support me.

32 thoughts on “Support groups suck

  1. karin barreau

    Hello Stephanie, I love reading your posts. You and others are very lucky to be able to get together with a group, here in Madison WI there isn’t any thing to help us. Not one hospital has started any grouped. I know that people have asked from the hospital I had mine done at. They told me when we asked about groups. So all I can say is have a great time as I know your doing. Karin

    Reply
    1. sarahgcook

      Also in Madison WI and unhappy to find there’s nothing here. Don’t know if I want to drive 30+ miles to Fort Atkinson to try one, especially if it’s an evening meeting.

      Reply
  2. Molly

    You may not even know how many lives you have brought good things to with your blog. I am sure your an angel to many!

    Molly

    Reply
  3. Molly

    Though I’ve never been to an in-person support group yet, I’ve found getting involved with the online community to be invaluable for dealing with my own “issues.” Support groups are definitely unfairly stigmatized, so thanks for sharing your positive experience!

    Reply
  4. Crystal

    I decided to join a support group not long after my ileostomy surgery and when I walked in I was the youngest by 50 years. Like you I stayed and continued for a year, but they really did no discussions just socialize. I really did not have anything in common but a ostomy and no one knew what Crohn’s was. Living in rural Eastern NC you do not have many choices!! Thank you for your “support group.”

    Reply
    1. ken

      I know all too well what crohns is, I asked my GI doc once if it could kill me and he said no, well he wont say that anymore because it just about did, it set up a massive infection that ate some of the colon, intestine and a hole in the bladder, then fluid built up and surgery couldn’t be done till some of that went down, finally after 3 surgeries and a 4th later because of an infection behind the healed shut scare and a ostomy bag i was done, except some heart trouble also was discovered. kv57@aol.com

      Reply
  5. Lauren

    This made me laugh, I encountered the same scenario when I went for my colonoscopy a few years ago to get my first official “yes its Crohn’s” diagnosis. The waiting room was filled with elderly people.
    I am 3 weeks post surgery and now have an ostomy, which has been the hardest adjustment and recovery. Thanks for sharing your stories, I can relate to so much. Your blogs have been my place to go to anytime I am feeling down. I always leave your page learning something new and with a new outlook. Looking forward to your new posts and congratulations on your baby! So refreshing seeing all you have accomplished while managing your Crohn’s.

    Reply
  6. Lauren

    Left out what I really wanted to say- my mom sent me a link to a local Crohn’s and UC support group and I am hesitant about going. It is about an hour drive away, and I am usually exhausted by the end of the work day. (Well, I am still home recovering from my surgeries now).
    I wanted to ask you what the support group covers in the meetings? Is there a speaker or is it more of a social gathering?

    Reply
    1. Stephanie Hughes Post author

      Hi Lauren, I think the groups vary a lot. The ostomy one I go to always has a program and speaker or something educational. But I’ve also gone to a Crohn’s/UC group that is more of a social gathering. I’d say if you’re up to it, it might be worth just going once and seeing if it’s something that you’d like to continue going to. I know that’s a long drive and it’s hard at the end of the day, but then you can really determine if it’s worth the time and energy. And maybe you can wait until you’re further along in your recovery and have a little more energy. I do hope the recovery is going well!

      Reply
  7. Dale Miller

    Hi group I had ulcerative colitis had my colon removed in 2003 my question is I seem to get sick very easy does any one else have that problem

    Reply
    1. Henry Kiefaber

      I have had 7 operations.2 due to hernia removal because of the 5 operations on my colon. I always got sick. Last one most of colon removed due to scar tissue adhesions etc. I’m still recovering from over months ago. Hang in there.

      Reply
  8. Jennifer Miller

    Just wanted to thank you for being you. I have had my ileostomy going on 7 years now.. am 46.. but young at heart.. and feel alone at times. You’re my inspiration. Keep up the good work chickie!!

    Reply
  9. Jessica L Bonner

    I got a ileostomy last November. I have crohns disease and ulcerative colitis. doctor told me that I might be able to have a reversal later on. Well I went to him today and he doesn’t recall saying that to me or my family. I’m so lost. He told me to think about it and come back next week. I hate having this bag and just want to feel normal again. I have problems with leaking every day and I have 5 small kids and 3 teenagers. Of I could go back in time and change it and not get it I would. Please help me come up with information of the risk and the reversal.

    Reply
    1. Stephanie Hughes Post author

      Jessica, I’m so sorry you’re going through a difficult time with your ostomy. So a couple of things: Have you considered getting a second opinion on the surgery? Especially if a reversal was supposed to be on the table, it might be helpful to speak to another surgeon and get their input. And with the leaking, have you brought that up to an ostomy nurse? They might be able to give you some tips. Or tried changing the type of bag or accessories that you use? I have definitely found that I leak when I use specific bags but do fine with others. I do hope you find some relief, either way you go. Please let me know if there’s more I can do to help.

      Reply
    2. Michael lackouitz

      Do not do the reversal trust me bag is better a lot of problems with leakage with no bag and constant trips to the washroom if u wanna chat call me 630 408 0518

      Reply
    3. ken

      Leaking should not be happening every day, I use the Hollister bag and I have gone up to 22 days without changing it, my daughter does a better job of changing it then the hospital did.

      Reply
  10. Dawn

    I agree, went to a support group an i was the youngest there all thw rest were all older…couldnt really find someone to talk to

    Reply
  11. Jeannie Gosch

    My name is Jeannie. My friend just had a colostomy placed after complications from her celiac disease flare up. She’s still in hospital here in Gulfport, MS and is quite depressed as this isn’t anything she had planned for. She’s single, and overwhelmed with some other life changes as well. How can I help her?

    Reply
  12. Tammy fifield

    I recently had mine reversed and have boxes of supplies and wondered is there somewhere I can post them to sell for a cheaper amount.

    Reply
    1. Ann Miller

      Hi my name is Ann my husband and i are both disabled and on limited income. Please call me tell me what you have for sale. 406-209-2023

      Reply
  13. Rudy Marchand

    my wife had a colostomy in late January and has had nothing but trouble since. One problem was a big surprise. While these two surgeons were poking around in there she also got a complimentary hysterectomy and now has a big old hernia. This may have been cancer related but these two clowns have not been very forthcoming. Maybe we are still in shock from all this STUFF. Anyway, there have been three instances where the adhesive on the pouch let go with volcanic results. We are doing what we have been told to do and are at a loss for a solution to this sticky problem.
    Any ideas out there that might help?

    Reply
    1. Stephanie Hughes Post author

      Hi Rudy, I’m so sorry to hear about the issues your wife has been experiencing. Is the issue with the bag happening only at night? Or also during the day? Is the bag filled with only output or gas, as well? Have you tried different bags?

      Reply
  14. esmerelda paredes

    Hi everyone. My name is esme and im 27. i was diagnosed with lupus 12 yrs ago and up until april it only affected my kidneys, i went to the er thinking i was just in the usual lupus flare only to end up spending a month in ICU,bleeding internally so bad that i recieved over 20 blood transfusions as well as platelets. no one was able to find this very severe bleed(still dont understand that) so a G.I performed emergency surgery and found that my lupus attacked my colon and therefor killed it. i have had my ileostomy for just under a month and i honestly have zero idea what or how to identify issues related to it so i would really love it if someone could help me out.

    Reply
  15. Elizabeth Martinez

    I am someone who just recently had surgery and ended up with a colostomy bag. I am struggling emotionally to accept this. I need help please.

    Reply
    1. Stephanie Hughes Post author

      Elizabeth, please email me! Definitely happy to talk with you. (Stephanie@stolencolon.com)

      Reply
  16. MayLynda K Eads

    I had so many issues from a bad pregnancy and scar tissue from surgeries in the rectal area that I was wearing pads in my 30’s. After speaking with my doctor and surgeon I had a colostomy almost 7 months ago. I went in thinking this will solve my issues physically and mentally. Boy was I wrong. I no longer have the warning signs that one gets pre-gas eruption, I can no longer eat my favorite fresh fruits and vegetables or I blow outs, I am no longer comfortable with my partner due to the bag… I am replacing my whole wardrobe as everything shows the bag or lands directly on the stoma causing discomfort/pain. I traded one set of issues for another.

    There is only 1 support group in my area across town at 7:30 pm. Most evenings I am just getting home at this hour not to mention I am some what night blind. I have never met any one who has had a ostomy, if I did you could not tell. Does it get easier to accept and deal with the constant issues?

    Thank you,
    MayLynda

    Reply
  17. Henry Kiefaber

    Hi. I know the feeling. I’ve had a bag before and it was rough. I’ve had 7 operations and bag put back in February. I come to realize that this will make me live longer with hardly any major complications. So hang in there easier said then done. All things pass. E mail anytime

    Reply
  18. bonniescotlandpaisley

    It’s great that you found such a positive support group and that they were able to provide support and information to you. Unfortunately I attended one meeting of the local support group in my area and vowed never to go back again. I was only a few weeks out of hospital and feeling grateful for the hospital staff who saved my life but this support group did nothing but moan and groan. I can understand people not being happy about getting a stoma but the quality of my life increased immeasurably once I had my ileostomy yet all I heard from this group was doom and gloom. I then told my stoma nurse about my experience and thats when she told me she was aware of them but refused to tell her patients about them as they are so negative.

    Reply
    1. Stephanie Hughes Post author

      I’m so glad to hear that your ostomy has helped your quality of life! And yes, unfortunately I have found support groups to either be a big encouragement or a big discouragement. I hate that they aren’t always conducted in a positive way that helps those dealing with such a major change.

      Reply

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