Goodness Roxanne, your story sounds so familiar, it is almost like reading my own story. I feel for you, I truely do. I have had this for over 4 years now and unfortunately it hasn't gotten any better. It has changed some over time, but no better. My story is so long that I don't have time to write about
it right now, but I will. It may be a good idea to start a new topic, I'm not sure. (Any suggestions on that from those of you who have been on here for sometime about
starting a new thread or just continue on this one for that, because it will be lengthy). Anyway, I will try to do it later on tonight. It is already on here, but it will be way, way back months and months ago.
I understand about
the bloating and having to wear jogging pants and such. I have like 3 different pants sizes in my closet the biggest I call my big girl clothes and I hate to have to wear them. I feel awful when I get like that and the pain gets even worse and it is already really bad.
Most of the time my family is very understanding, because they have seen it so many times and for so long. My Mother especially is very supportative and understanding, but even she occassionally gets frustrated with it and gets upset if I can't do certain things. Yes, my nerves get shot especially when my husband gets overwhelmed and ill and starts fussing about
this and that. He is just venting (as I do sometimes as well ), but I still just easily feel guilty about
my illness and not being able to provide financially as well and not being able to do things that I want to do and need to do. So, when he gets like that, usually I am already really sick and I guess that is part of the problem, but if not - I surely get stressed out and get sick everytime from the stress that I put on myself.
I am a nurse ,(although I am not giving nursing advice on this site, just simply telling my story and things that have happened to me), and I did have to go through school with my life basically put on hold during that time. Then I worked for 6 years as a nurse and loved it; although it is a very hard physically and mentally. In addition to being on call and having so much responsibility in the job. I still loved it though and miss it very much. Everytime we went to the hospital with my daughter, I saw all the people I use to work with and that makes dealing with my illness worse - knowing I will never be able to do this job anymore. Or at least more than likely not.
I understand about
the fear of not having a bathroom nearby - traveling even short distances is the worse for me. My home is definately my comfort zone. Sometimes, I don't even know myself anymore either. I live in a rural area as well, but I have good doctors; although I had to do a lot of changing to get to where I am now and some thought I was crazy for sure. Some told me there was no such thing as IBS and Fibromyalgia and that I was a nurse, so I should know that. I was furious and terribly upset. There were times when I questioned my own sanity. Especially when I was in so much pain and so many things going on and every test was negative. It was truely awful.
Anyway, I wish you luck with finding a good specialist; although my primary doctor has helped me tremendously and that is who I see primarily now and only see the specialist every 4-6 mos now. My current doctors are very good and very understanding and I have been with them for sometime now.
I am glad you have a job where you have some time off to be with your kids; they do grow up fast! Hopefully they will get your meds straight; that is a big deal and the right meds really do help. It took a lot of trail and error for me - I was either very sensitive or didn't respond, but this was because my IBS is so difficult to treat slight changes can throw me for a severe loop and then sometimes I have to take large doses of meds. The doctors and I have figured out what works and what doesn't for the most part, but I still have to deal with the problems of diarrhea / constipation; mainly now I am C, but still have sudden urges of spasms / diarrhea and possible incontinence. That is really fun. Anyway, I will try to give some history of my illness if you would like to hear about
IBS, Fibromyalgia, Depression, Anxiety, PTSD, Migraines, GERD: Cymbalta, Fentanyl Patch, Oxycodone, Amitiza, Xanax, Phenergan, Levisyn: Hysterectomy, Lap-Choley.