IBD Support


If you haven’t already, head on over to The Crohn’s Forum to check out my latest post for them about IBD Support.  It can be found here.

 

 

IIF-Never-Stay-Quiet

 

Now that you have come back, let me update you a little more.  Since the climb, I have done even more support for the IIF.  This past Wednesday, the IIF had their first support/meetup group.  I had helped in organizing it and getting it together.  Sadly there were only 3 IBDers that showed up, but it was a start.  And I do have to say that the people who did come were amazing.

One girl who came was 15 but looked 12.  I thought this group would be a little out of her league when I first saw her, but after she opened her mouth I was amazed.  Now, I feel that when you run a support group, you should be the inspirational person.  You should be the one to install confidence in others and help guide them on their journey.  However, I felt humbled when this girl spoke.  She was the bravest 15 yr old I have ever met and had the best outcome on life.  She clearly was not going to let IBD stop her from living.

Another person that was there was just the opposite.  He had never been to a support group before and was still a little new to IBD.  He hadn’t really opened up yet about it with others.  Thankfully, we all have been there so we were all comforting to him.  So much great advice flowed from us that I hope he feels a lot more confidence in living his life with IBD.

The third person that showed up was someone I convinced to come.  I met her on the climb and I wanted to have someone who was at a point in their life where they were comfortable with their IBD to really open up. I think her story is definitely a great one and I think she helped the others in understanding this damn disease  a little better.

This was the first group.  We will be having one every month and I already can’t wait for the next one.  Hopefully we will have more people there.  I love hearing the different stories and journeys people have taken.   If you are in the Northern New Jersey area, and want to attend, let me know.  I will give you all the information.

 

8 comments on “IBD Support

  1. June says:

    YOU are a true inspiration, I hope you know that!

    • Thank you. I do what I do though just to help others. I went through life so alone with this disease that I don’t want anyone to have to do that. I am just doing what I can to assure that.

  2. rfwarlick says:

    I am currently studying abroad in France and am having a Crohns flair. I had two days ago that I was able to control, but it’s coming back. I don’t know the terminology, and I don’t know of any doctors to see. I’m on a bus with my group going to Lille. Any advice would be appreciated. When I have flairs, I go from asymptomatic to full obstruction in roughly 6 hours so I need guidance ASAP. Thank you so much.

    • First I want to say I am jealous. I have always wanted to go to France.

      But, that isn’t what you want to hear right now. I wish I could help you and give you some advice. Sadly, I have never dealt with obstructions. My problems have always been the opposite. Hopefully, someone will read this and some advice to give.

      My only advice that I can give, and it is probably too late for this trip, but keep a food journel. Write down everything you eat and how you feel after eating it. Eventually you will see patterns and will figure out what is causing the obstructions.

      • rfwarlick says:

        Thank you. I was diagnosed at 11 so I know my food triggers. Stress is another mild trigger and apparently the stress of paris caused one flair, and then Omaha beach has caused another. At this rate I’m going to be facing a full obstruction by tonight and need referrals. If you have any contacts that would be great.

      • I wish I had contacts in France to help you.

        What I could suggest, and it isn’t easy and many people don’t want to hear someone say it, but try not to stress. You are in a good country with beautiful sites to see. Enjoy yourself and don’t worry so much about the disease.

        You know stress is a trigger. So don’t stress. I know that is easier said then done, but just learn to try and enjoy the moment you are in and don’t worry about the what ifs. That was always my problem…I worried about the what if’s. As soon as I started focusing on the here and now, things got better.

        Good luck and I hope you don’t have any serious issues. Hopefully you can enjoy yourself and not get into a bad situation.

      • June says:

        I looked it up and there’s the University Hospital in Lille that has an IBD group. Check that out. What I do for obstructions when I’m flaring is I go on a complete liquid diet. Can you get meal replacement drinks? 6-8 of those a day and LOTS of fluids. It helps flush out the stuff in there and then being on liquids keeps me from getting fully obstructed. It helps me avoid the emergency room, and usually puts me right back to a good state within a week. Good luck!

      • rfwarlick says:

        I’m also in contact with several people. As soon as I arrive I’m going to the infirmiry, just trying to avoid the hospital. But I’ve been in contact with international health insurance and they’ve told me about the local hospital. I’m also starving which is a good sign, it means my stomach has emptied and so stuff is moving. I’m hoping it’s just painfully moving. I can deal with pain, I’m just afraid it’s a full obstruction.

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