My paternal grandmother just passed away this past weekend. She was having horrible stomach pain and when they did a scan on her, they found a congenital condition....she had a hole in her intestines. She was 88 y/o and the surgeon said he has never seen anyone that age with that condition. They usually find it much earlier and correct it. Anyway, other parts of her intestines got wrapped up and tangled in that hole and strangulated part of her bowel. She had dead tissue. They did try to cut out the dead portion, but the toxins from that were just too much for her body to fight off. Other than that, no one else in my family has ever been diagnosed with an IBD...plenty of family members have sensitivities to different foods, etc....but I am the lucky one with Crohn's.
I, too, worry about my kids getting this...I guess all I can do is be thankful that I know more about this disease than I would like, so I will always be supportive if anything should happen to them. I just know that it was rough being diagnosed at age 37...can't imagine having it while trying to get through school.
I would have the surgery. If I had known that all of the meds I had taken were gonna do me absolutely no good, I would have had my proctocolectomy in that first year! I know that the docs try and try to save as much of your intestines as they can, especially when you are so young, but sometimes it is the only thing that gives you any relief.
I wish you the best of luck! Please keep us posted!
Oh my Crohnies! I've missed you! I can't believe that I have let so much time get past me! Please forgive me!
I've been busy with work and the kids and single life in general. Had a scare this past week and spent the 23rd in the ER for dehydration. Thank God that my blood work showed that my Crohn's is still in check...just had a bad stomach virus and a bad kidney infection. Actually spent my first Christmas in 3 years with my kids and family. It was wonderful:) Hoping that all of you had a wonderful holiday.....think I will actually get to celebrate a New Year! I'm so looking forward to it.
Please everyone....tell me how you are doing! I've missed you all! I guess one of my New Year's resolutions will be to manage my time a little better! You all have always been here for me.....don't want time to get away from me like that again!
Drop me a line and let me know how you are doing.
Not even sure when the last time I wrote on here....but my divorce was final a couple of months ago....enjoying my independence but have also met a very special person. Just going to take it slow and see what happens.
Hope to hear from you soon.... Love always, MindyView Thread
Hope you are recovering quickly:) I had a permanent ileostomy done in December 2010. It was the best thing I have ever done in regards to my Crohns. It has given me my life back. I was wasting away in bed before I had the surgery. I had tried surgery before...just kept having resections, but each time the disease came back within weeks. It was very frustrating. I am now finally in remission and back to work part-time. I have a life again:)
Hi....so sorry for all that you are struggling through. I was diagnosed just 3 years ago. In that time I have tried numerous medications and have had 5 surgeries. The only thing that got me in to remission and feeling better was having my colon/rectum removed. I struggled for months about having this surgery, but I spent more time in the hospital than I did at home. I have been on steroids for a year and a half...also tried Remicade for over a year. The surgeries that I had were mostly resections....had a temporary colostomy done, too, but Crohn's attacked my stoma within six weeks of the surgery and did so much damage. My colon was keeping me so sick....I just couldn't stand it any longer. With that being said...having my colon completely removed was the single best decision I have made as far as this disease goes. Trust me when I say that I thought it would be the end of my world to live with an ileostomy bag, but it truly gave me my life back. I was on disability for a little over 2 years....I am now back to work part-time. I can leave the house without needing to know where every single bathroom is. I can spend time with my kids and not feel like death all of the time. My quality of life has improved 1000 times! I am in no way telling you to have surgery, but in my case it saved my life in sooo many ways. I struggled with the decision for months, but once I healed from the surgery, I wondered why I had waited so long. There is life with an ostomy if that is something that you need to look at in the future:) I promise....
Good luck to you and keep us posted... MindyView Thread
Hi guys! It's been a while since I have posted. Sorry that I have not kept in touch better.
Think I may be having a little flare. The past week or so has been miserable. I've been sleeping tons and just generally not feeling well. I've also had a fever of 100 or so on a couple of occasions. My weight is down to 100 lbs. I have an appointment to see my GI next Tuesday and he will do blood work at that time. I'm so scared that I am not in remission anymore. Three months wasn't long enough. I'm doing what I can to take care of myself...hoping that I bounce back quickly.
Hope everyone is doing well. I've missed you guys. Please let me know how you are all doing:)
Thanks, Arbob! My doc gave me a smaller dose of prednisone so that I could taper by teeny amounts at a time. He has given me permission to play with the doses so that I am not struggling so much during the taper. He wants me off of this stuff in the worst way, but does not want me to back track at this point. I've recently gone from 10 mg to 7.5 and will probably just go down 1 mg at a time now. Anything more than that will have me crashing....and I ain't doin it!
Hannah, as far as the dating thing, my sweetie lives about 3 hours from me. So we are not together as much as we would like, but it is nice to have someone out there that understands all that I have been through. It does seem soon to already be dating again, but I lived in such a lifeless, loveless marriage for so long....it just feels good to have those butterflies in my stomach again. I am leaving after work tomorrow to go see him....looking forward to spending some time with him.
Hi Hannah! I'm sorry that you are struggling...I remember the stress of nursing school and the clinicals and all of that.....and it was way before I got sick.
I don't drink pop anymore because the carbonation makes my bag so full of air....I can't stand it. I, too, must have my caffeine every day though. I have been drinking Vanilla Lattes...you can buy them in packs of 4 in the coffee aisle. I buy the Kroger brand because they are a little less expensive than the Starbucks, and I actually like the flavor a bit more. I usually mix mine with Vanilla Boost for the extra nutrition and it is pretty tasty. Might be something that you would be able to take instead of trying to pack a lunch every day.
Hope that you find a schedule that works for you so that you are getting plenty of rest and getting your school work done, too. Just take it easy on yourself, ok?
Congratulations! I'm so excited for you and your hubs! Both of my pregnancies were before my diagnosis, so I don't have any info for you. Just really wanted to tell you how happy I am for you and hope that your Crohn's cooperates:)
Hope everyone is doing well:) I saw that some of you are starting back to school....hope that the stress of that is not throwing you into a flare.
Hannah, how are things going with you? Haven't talked in a while...it's been busy getting used to life as a single mom. Don't get me wrong, I love my new life....I will just be ready for the kids to be back in school (tomorrow morning-WOO HOO) so that I have a little free time again.
Everything is going so well for me. Work has been busy....I am still only working 3 half days a week but it seems to be enough for now. I'm seeing a wonderful man who also happens to have Crohn's and has had the same major surgery that I have. It's so nice to have someone that totally understands everything that I have been through. He treats me like a Queen:)
My last GI appointment went well. I am going for a bone density scan on September 1st to check my poor bones from all of the steroid use. I am finally down to 5 mg, so hopefully it won't be long til I am completely off of it. After more than 18 months on this stuff, don't know that I will ever let them put me on it again. But, I guess if I have a flare that is bad enough I will do whatever is necessary to get me back on track.
Hope you have all enjoyed your weekend. Looking forward to catching up with you all now that the kiddos will be back in school:)