Hi all. Decided to write as I've heard from a few of you lately PM and finally might have some "good"? news to share.

After failed humira (he had to turn allergic afer 4 months and leave expensive drugs in my fridge I can't stand to pitch), he's refusing any more drug therapy since it's all had horrible reactions. Good news is prolapse surgery in dec (knock wood) seems to be holding. They somehow sewed his intestines together so it couldn't fall back out...... After now 9 months of uncontrolled disease and weight loss (poor skinnier guy than ever), drs. gave him 1 month of enteral food (yup- you guessed it, he reacted badly to it also), he's finally gaining weight on his stupid waffles. He's finally found a way to add an off brand egg beaters (no onion powder) on duragesic patch change day (now on multiple patches). OK, so he was up 4 lbs and now down 3 but I still count that one lb! He's not down 23 hours a day (maybe 15 now) and that makes him feel better.

Don't know what our future holds (nor do the drs.) but his color seems better and he seems happier so who cares about the rest. He still has alot of pain but the day to day is quite a bit easier (at least on my end).

I thank all of you who still check in. I don't come here often because I don't want to scare people off (Dennis is a case that no one can classify as his body seems to react the exact opposite in EVERY situation than what's expect and since GI and internist have started treating him as the opposite, things have improved- go figure) on a surgery that can help UC. Your support and caring mean more than you'll ever know.

family and friends- just stay strong. somewhere, eventually, the ground will even out. can't promise lollipops and rainbows or even a life like previous but I think like dennis thinks- this beats the hell out of the alternative..............

my thoughts, love and prayers to all!

Oh happy dance! Thanks for checking in Joan (and Dennis in absentia). This actually seems like some good news for once. And maybe Dennis is just going the very, very, VERY slow route. Gain 1 pound every six months. Stay up 10 minutes more every three months. This isn't a complication - it's deliberation. He's definitely getting there.

BTW - you do NOT scare people off. How many times do I have to TELL you that. Besides, we all get tons of information from Dennis' convoluted process. That's valuable.

I'm so happy you're both happier. I'm so happy that Dennis' guts are staying put. I'm so happy that Dennis has stupid waffles. And I'm so happy that your's and Dennis' day to day is easier.

Big, big hugs to you both!!!!!

kathy

Thanks Joan for letting us know. We do care. I remember you sleeping in the chair at the hospital and I know the love you have for each other from seeing you both together.
Please tell Dennis I send my regards

Hi Joan,

Thanks for the update on Dennis. We have all been wondering about you both. You haven't said much about how you are coping and I really do hope that Dennis' improvement (albeit small) has had a knock on effect on your life too.

I agree with Kathy, you don't scare people off and you have certainly been of great help to many people here even if you don't know it. That's what this site is all about.

Take care and stay strong.

Luv & hugs

Shell

I'm actually doing quite well. It is what it is and although until just recently it was all downhill, it was a slow process and not dramatic and trips to the er etc. Our internist is bending over backwards to keep him comfortable at home so when he gets sick, he gets antibiotics IV, he still does fluid infusions etc. but since we take care of it all ourselves, a lot less crazy run to the hospital stuff.

Boys are doing great. Younger one just got accepted into an advanced math class at the high school here next year (he's in jr high) so he's excited about that. And the older one just qualified to be in the National Forensics League speech tournament in Las Vegas in June. He's competing in international extemporaneous speaking. (He's the one with Asperger's syndrom so this is HUGE for him.)

I guess the fact that they boys are both doing well also shows that if nothing else, life is more settled which makes a HUGE difference.

Only real thing is that it's lonely knowing that this is life and things are about as good as they will get. I miss having a "date night". The pain Dennis has from the multiple surgeries prevent him from sitting for any length of time so even a movie at the theater is out. I miss that part of our life. He won't be able to travel on vacations as the 20 minute ride to the drs. office puts him down for a day or so. Boys are already talking about our summer trip and exicted (as it's my whole family getting together) for us all to be together and they don't get why although I have fun, it's just not the same for me. I want him to be with us.

So, there is my only real hang up lately. If that's as bad as I have it, I still think I'm pretty darn lucky!

I'm actually doing quite well. It is what it is and although until just recently it was all downhill, it was a slow process and not dramatic and trips to the er etc. Our internist is bending over backwards to keep him

Oh Joan, how great it is to hear of you guys getting some sense of normalcy to your lives. Makes me mad to think that you have had to give up so much to arrive at this place, but I know what it is like to keep running to the doc's every week for some problem. Even if you don't like it, dealing with things at home, like infusions, definitely keep the pressure off. I can't imagine how difficult it must be to not be able to look in a book or on a web site to figure out what to do next! It is crazy that he responds so paridoxicaly to everything. I can see why he is not interested in any new or experimental treatments. At least he does not react oppositely to narcotics!! And waffles, how'd he figure THAT one out??

Take care and keep in touch!

Jan

So so so so good to hear from you! I didn't know how to reach you off the board and had thought of you so much wondering how you all were doing - thank you for checking in. You were such a huge help to me when going thru so much with bro and I thank you for that - going out of your way for us when going thru so much yourself.

I wish things were different for you guys but glad they are at least as good as they are. Hopefully this is one small step toward more steps forward in the future.

Hugs to you gal - Dennis is so lucky to have a wonderful gal like you with him thru this and I am sure you feel lucky to have him still by your side.

Best wishes and prayers go to your whole family. Tell the boys I said GOOD JOB! to both of them (eventhough they have no idea who i am LOL)

Take care my dear and do stop in and say hi - we all miss our Joan fix when you don't

Joan,

Sorry to hear about Dennis' health. If there is anything I can do let me know. I am nearby.

Jeannie

Hi Joan, remember me? Kim and Hank Hess from Cleveland? My harddrive crashed in Feb and had to be replaced and I lost all my email addys and of course I had nothing backed up or written down. I have still not recovered! Email me and tell me how you guys are doing! I even had a heck of a time getting back in here and lost all the private messages and stuff. And for some reason I cant PM here, the link won't work for me. Hope things are okay.....
khollingsworth@roadrunner.com