Since starting the blog, I've been following different groups and individuals speaking about IBD and ostomies through Facebook and Twitter. With that, I'm able to see the questions that people have regarding their illness and the struggles they are facing. The questions are asking of others what experiences they may have had with certain medications, what to expect from the various procedures and tests that those with IBD endure, and just what to expect from the journey of IBD in general. People seem to have a mixture of fear and uncertainty as well as a curiosity with the situations they have found themselves in. Ever since their initial diagnosis, their lives have been turned upside down. Surprises have been thrown at them from every angle.
There are those individuals who are able to find relief from their symptoms by watching what they eat. And there are those who can eat like they always have and seem to experience no issues. My husband is the latter. He has Ulcerative Colitis, and he eats today as he did before his diagnosis If he experiences any issues from that, he hasn't mentioned it to me. However, during my worst days for Crohn's Disease, I couldn't even drink water without being in pain and having to go to the bathroom During those time when my symptoms weren't so animated, I ate a diet free of spicy and acidic foods and raw fruits and vegetables. My Crohn's still flared.
My husband also has had success with medications as it seems that many others with IBD do as well. He never had to take any steroids thank goodness. I, on the other hand, had no success with any medications but prednisone. And that was no long-term solution.
I've done well with my ileostomy. (Minus the leaks like yesterday morning.) Thankfully, my Crohn's hasn't spread elsewhere. And no other issues arose. But there are so many others out there who are still struggling. It may not be so much the issue of IBD but maybe they now have other issues that stemmed from the issues that IBD caused.
This is where support is needed. And for the most part, the people they are around on a daily basis try to offer that support. They mean well. Suggestions of what to do to alleviate symptoms and to help with the illness overall are offered. It's a "try this..." or "go on this diet because so-in-so has the same illness as you and the diet worked for them". But, as I stated with my husband and myself, just because something works well for one, it doesn't necessarily work for others. (Even though he has UC and I have Crohn's, I think this still applies.) The value of family/friend support is great though and shouldn't be discounted. They are the ones to go to appointments with their loved one, the one to be a listening ear when others aren't around, the one to take care of them.
The benefit of support from those with a similar illness is great in another way: that of experience. At the time of diagnosis, I knew of one person that had the same illness as me. That person struggled with it a lot. There seemed to be a lot of unanswered questions for them just as I had at the time. My doctor was able to connect me with others who could provide me with answers, with stories of their experiences, and even better, a light to guide me through the darkness that Crohn's formed for me. I was able to ask point blank questions that only they could answer. Questions like how they felt having Crohn's (and an ileostomy), how did it affect their relationships with others (like marriage), and what were the pros and cons to having an ileostomy. A doctor could provide information on the whats and hows, but they couldn't provide the feelings, the emotions that someone who has been there can. And with the support groups out there on the internet, you can find someone who has been in a similar situation. Tips are traded, questions are answered, and you can be connected to even more people like you. Check out The IBD and Ostomy Support Blogs and Crohn's and Ulcerative Colitis Support on Facebook for more IBD and ostomy-related blogs and support. These people are ready to listen.
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