I am taking Pentasa 500 mg 2 capsules 2 times a day and am still trying to get off of the Prednisone. I'm down to 10 mg on that. My GI doc may want to start me on a biologic for prevention, but I don't see him until the end of July.
Food is still quite the issue for me. I still drink mostly BOOST....if I do eat, I have to take Phenergan with it:( There are only a handful of foods that don't make me nauseous....but it is a start;)
My surgeon called me today and officially told me that the radiologist report said "NO EVIDENCE OF ACTIVE CROHN'S DISEASE AT THIS TIME"!!!!! Woo Hoo!
I've already called Social Security about returning to work for 10-15 hours per week. I know that I have to take it slow......but I am sooooo excited to be getting back to a somewhat "normal" life:)
I've spoken with the office where I worked for 12 years before my diagnosis and they are ready to have me back for whatever time they can get me! I believe my first official day back will be June 1. They have let me come in and volunteer on days when I have felt well enough to do it. I will need some retraining (I'm a Medical Assistant) and things change so frequently in the medical field. I am so ready to get out of this freaking house!
Hope you are all having a good day:) HUGS! MindyView Thread
mattdamon....I turned 40 in March. I was so sick that day....spent the day in bed watching reruns of "Dog-The Bounty Hunter". It was such a depressing day.
Just found out today that I am officially in REMISSION, so things are finally starting to turn around. I'll figure out some way to celebrate! Hope you enjoy your trip...sounds like tons of fun and Lord knows, we could all use a little of that!
Hello wnivsh! So sorry for what you are going through. I went through the same thing! I was scared to death to leave the house and I still had accidents here at the house. It got to the point where I was wearing Depends if I had to go to the grocery store:( We are all different...and unfortunately my Crohn's settled in my rectum making it extremely painful every time I went...which was up to 30 times a day. I have had 5 surgeries (was diagnosed in 2008) and just had my colon and rectum removed in December of 2010. It certainly was not what I had wanted my outcome to be, but I have a life now! No more pain and no more worrying about leaving the bathroom for 5 minutes.
The only thing that ever helped me even a little was taking Immodium...but I took tons of it. That was before I was diagnosed and didn't know what was wrong with me. It was a scary time...but the immodium did help. I was taking 3 or 4 tablets at a time and taking them probably every 4-6 hours.
By the time I was diagnosed, I already had a fistula and a blockage, so a resection happened within 6 months of being diagnosed. I wish I had some answers for you....just wanted you to know that I don't regret having the surgery. My quality of life is sooooo much better now. I can play with my kids again and go places. I still have really bad days where I get really tired and I have been on prednisone for over a year, so things are not perfect. But they are better. I hope that you find your answers!
I'm so glad that is over! As usual....the prep was worse than the test and I had to do was drink 10 oz of Magnesium Citrate and take 4 dulcolax....and of course drink an ocean of fluid all day. I'll tell ya what, though....I would rather stick a hot fire poker in my eye than drink Magnesium Citrate. I get full body shivers just thinking about that nasty junk! Oh well...it is done now!
The radiologist doing my tests today says he did not see any fistulas. He also said that it doesn't mean there isn't one. When they are small or just forming, apparently they can close and open on their own. I'll the good news for now. Hope to be done with tests for a while and start enjoying the spring/summer with my kids.
I have actually been playing around with the idea of returning to work for a couple of afternoons. I have to call Social Security to find out the rules with my disability....but I think I may be ready in a few weeks to try. I'm only talking like 10 hours per week....but it would mean the world to me to have a little bit of that life back! I miss it so!
Hope you all have a fabulous weekend. It has been raining in Ohio non-stop for 2 weeks and finally the forecast says "sunny and 73" for tomorrow:) Hoping to get out a little after I recover from the prep I did last night.
Oh, Arbob....I just love you so! I've been posting on other's threads....just haven't started a new one of my own in a few days.
Had a rough week last week....just nasty financial stuff....we've all been there! So frustrating trying to stay afloat with all of the medical bills! GGGRRR!!!!
I have 2 tests this Thursday....a small bowel follow through and a vaginogram to check to see if I have a fistula forming from my small intestines to my vagina. Have to start a prep tomorrow...ugh...just hate that! I only have to drink 10 oz of Magnesium Citrate and take 4 laxatives.....nothing but liquid all day long. It could be worse, but it still puts me in a grouchy mood just thinking about it. Gonna try to stay busy tomorrow by volunteering in my daughter's class in the morning and going in to my old office for an hour or two in the afternoon. I'm supposed to drink 12 oz every hour from 9 am til 9 pm....so I'm gonna have to pack some Gatorade to take with me for the day.
Hopefully, after these tests this week I will be done for awhile. The kids will be out of school in a couple of weeks and I would just like to go a few weeks without any docs or tests!
Thanks for checkin in on me....hope that you are doing well:)
Saw my surgeon on Monday....he did an "exam" and said that he could not see any drainage from a fistula. My GYN said that he did see it. So, now I have to go next week and have a small bowel follow-through and a vaginogram done to see if I have a fistula forming from my small intestines to my vagina. Sounds like great fun, right there! I've never had either of these tests done before, so I am gonna have to do some reading up on them. I will let you all know what I find out once I get the results.
I was on Remicade for 10 months before my fistula was closed....it may take a few more infusions before your body really shows a big difference...but certainly say something to your GI about it, they may be able to add something to it to help you along and get you off of the evil prednisone.
And I agree with you, going to the bathroom 50 times a night is exhausting! Hoping you get some good sleep very soon!
I live mostly on BOOST, so if you have a cooler you could always make up a drink for lunch.....Carnation, BOOST, Ensure....they usually fill me up pretty good...especially if you could eat some crackers or something like that with it. Another thing that I have actually been able to eat without getting sick are Lunchables...they are pretty convenient little packages and have lots of varieties. You could also try mini bagels with cream cheese and turkey....YUM! Hope you find some good brain foods to get you through your days!
I'm so excited for you to get started! So proud of you Miss Hannah!
Thanks so much, WildAries! I did buy a "wrap" from a place called OstomySecrets....same idea....it is like a very short skirt that has a small pouch for my bag. It fits very close to the skin....think it's made of spandex or something similar. It does make me feel a little more secure as it covers everything. Thanks a lot for sharing your suggestion with me....I know it's not real easy to talk about this kind of stuff:(