Our story

[TheWifeUC]

Hello everyone.
It's about 1:00AM my time and I just got home from admitting my husband to the hospital for the second time this month. He was diagnosed with UC almost 2 years ago. He got sick for the first time about 3 months after we got married. As hard as it has been, we both know it could have been so much worse.
Right now we're both just very frustrated and feeling rather helpless. Asacol/Mesalamine and Prednisone have essentially failed to bring him under control. He was started on Remicade two weeks ago while inpatient and felt drastically better immediately after the infusion. Unfortunately he has been steadily deteriorating since he was discharged. He was back at the infusion center for Round 2 today and the Doc decided it was time to be readmitted for more bowel rest. "Crushed" is the only way to describe our reactions to that news. So it's once more back into the breach my new friends. If you have any words of wisdom for keeping spirits up, we could really use them. Humor, sarcasm and snark are our favorite pasttimes.

Thank you,
The Wife

 

[Dexky]

Humor, sarcasm and snark are our favorite pasttimes.

Thank you,
The Wife

You'll like it here Wife!! Welcome!! I hate to mention what may be what you guys dread the most, but the prospect of an eventual colostomy would not be the end of the world for you guys. I work with a man who suffered terribly with UC for years until his colostomy. No one knows he has it unless he chooses to tell. He has a beautiful wife and two beautiful children and a full and rich life. I hope it doesn't come to that but just know that should it happen, life will go on. Best of luck to you both!!

 

[rottengut91]

Welcome aboard Wife,
Sorry to hear your husband is having a rough go. Hope things get better soon. I myself just started Humira. Still holding out hope it will begin working. No noticable improvements yet, but I just had initial injections this past Friday. In fact, I've been feeling worse and probably should have went to hospital yesterday, but have decided to just do all liquids here at home in order to give my bowels a rest.
I'm also one to look for the funny side of things when possible. Without humor how does one survive in this world? Those of us suffering these awful IBD symptoms especially have to laugh it off. I don't mind blaming my gas on the dogs, we've got four, they'll never rat me out.
Hang in there. Keep laughing. Things are sure to get better, and like Mark said, if surgery and an ostomy is in the future, it is by far the end of the world. I'd trade feeling like I am now for a bag any day. I'm about ready to throw in the towel myself. I truly hope you guys find a treatment or solution that works for you. Let you husband know were thinking of him. He's definitely not alone, and neither are you. We're here when you need us. Take care. Keep us posted.

 

[MADiMarc]

Hello, Wife. I read your post to my husband and he can so relate. He is the one to watch me suffer (I think that is worse than to go through it yourself). I love the snarky comments, the sarcasm and the black humor approach myself. I really love it when I can crack the doc up! Makes sitting in bed with tubes hanging out of you a little less insulting.

Anyway, welcome and keep us posted.

 

[Astra]

Hi Wife
and welcome

Well you've come to the right place for laughs then! Nowt is TMI here!
Sorry your hubby is in this situation right now, hope the Remi starts working soon.
Hang on in there, we're here for you both whenever you need us
lotsa luv
Joan xxx

 

[caligirl]

Hi Wifey - Sorry to hear your hubby is feeling so poorly and is down about it all! Sometimes it just doesn't seem like there's anything to look forward to with UC and/or Crohn's. If the meds fail to bring it under control, he can always consider having the pouch surgery rather than a permanent ostomy....hopefully the meds will work though - it can be rough until they get the meds right - and it seems every one is different with what works and what doesn't work...I have often thought that it can be a case of mind over matter - just refusing to let it get you can sometimes work...Good luck and prayers being sent your way!

 

[TheWifeUC]

Thank you everyone for the warm welcome!
Right now we are still very hopeful about the Remicade working. He does REALLY well for several days following the infusion and he's only had 2 so far. The problem is keeping him well enough between infusions while they increase the dosage. Does anyone out there get their daily meds via injection rather than orally? We thought of that today and haven't gotten a chance to talk to the Doc yet.
If anyone has any ideas for keeping entertained while in the hospital, we'd be glad to hear them. He's got the strength and steroid-induced energy so we try to go for walks but those get pretty boring ("Oh look, another institutional hallway!"). We've got a young family member who has also been spending time in the hospital but she gets to be in the wicked awesome children's hospital with toys, video games and little red wagons instead of wheelchairs. We are totally jealous.

 

[lynx]

Hi just wanted to welcome you and say that I too am on prednisone and asacol at the moment and maybe will have to do remicade if this does not work...I was in the hospital for a month..the month of september and diagnosed with Crohn's after being diagnosed in 2006 with Ulcerative Colitis.

As for getting injections of meds outside the hospital i think the only ones they allow you to do in the US are like diabetic meds and maybe humira which is like remicade.
Other than that I think they like you to take all your stuff orally or some other way besides a needle.

Entertainment in a hospital? LOL ...my girlfriend would take me in a wheelchair around the hospital..like on a wild safari tour...we would just make small funny comments about things we saw. I was way too weak to walk and on TPN at the time. You would be surprised...lol...when no one was there I would get on my laptop and browse about a bit...although I was so damned sick I mostly slept. But the couple times we went on safari were some very fun times ...as much as could be expected in a hospital.

 

[Entchen]

Hi, TWUC, and welcome to the forum. I can't imagine the ups and downs you two are going through. We're glad to have you here sharing your story and taking part in the forum.

 

[DustyKat]

Hi TheWifeUC and :welcome:

I'm glad you found your way here 'cause this a great place for support and info and we would love to have you here. Haha I know what you mean about the different wards. When my daughter was in hospital she was on the kids ward and there was no shortage of amusement there!

I hope the Remicade starts to do the trick for hubby, keeping my fingers and toes crossed! Good luck and welcome aboard!

Take care,
Dusty

 

[MADiMarc]

Infusions at home

Wifey,
I did receive infusions at home several times. The problem for me was that I have little tiny veins that just jump out of the way of the needles. So after having the nurse come and jab me about 10 times per visit, I gave up and went back to the hospital. I really think it depends on your insurance and your doctor. Talk to them. They might think that your husband is too ill to chance it or they may not.
Michele:hang:

 

[TheWifeUC]

Home again! No longer bleeding and taking hour long walks around the grounds will get you sent home. 3 weeks until the next Remicade. Hydrocortisone foam enemas, back on the Asacol, and on a high-fluid/low-residue diet. Fingers are crossed that he won't decline so far between now and the next infusion.

 

[TheWifeUC]

Yay! He's been successfully home for a week! After a minor set-back last Sunday, he has been home and we've been very slowly amping up the amount of food he is eating. Still VERY low residue and a lot of chicken noodle soup but today he also added pudding and my newly-invented Slow-Cooker Chicken Stew. He thinks that the bleeding has diminished though he is now having a gas problem (talking to the pharmacist about that tomorrow). Our goal is to keep the pain, bleeding and # of BMs at a minimum while we count down the days until his next Remicade treatment. Only 16 days to go.
Thank you to everyone here at the Forum for the support and for the wealth of knowledge that the site provides.

I hope you are all having a symptom-free weekend!
-Wifey

 

[DustyKat]

Oh wow, it's so good to hear that things are continuing to go well! I so hope it stays that way until his next treatment.........................

:goodluck::goodluck::goodluck:

Take care,
Dusty

 

[chand]

Sorry to hear, Things will get better, no worries

 

[Astra]

Good Luck to you both, fingers crossed!
xxxx