In need of prayers/support

[figmentswife]

Does he have an ileostomy?

I spent most of last year with a temporary colostomy and then an ileostomy. (now all reversed)

It is so, so important to drink when you have an ileostomy. My surgeon told me "drink till you pee." And drink lots of gatorade to replenish the electorlytes.

It will get easier.

There is a great support board: meetanostomate.org that has so much good information in living without or partial colons.

Hang in there.

Yes he does, we are learning, we thought he had had plenty of fluids but found out he had not. Today I had him drink 6, 32oz bottles. He would start with powerade then I would do water. He looks good and seems to be doing well. He can't change his bag along yet because of the wounds. They are in an L shape around his stoma, starting about 2 inches to the left. ( make an L) he has 3 open wounds with drains that I have to pack daily but I have to change the dressings a couple of times a day.

Did you do Jpouch or something else. They made his pouch and he will do his takedown later. Was to be at 6-8 weeks from first surgery, but we now want his body to fully heal before the takedown.

If you did get the Jpouch, how do you like it?

There have been many kind people that have helped us from the Dis, but one nurse(from the Dis) that has just been an amazing help and friend through all if this. I can't thank her enough for her kindness and friendship, I hope to meet her in person one day.

I also will go check out that board tomorrow.

 

[dpcheercoach]

Fellow Jpoucher here to say you and dh are in my prayers. Sorry to hear of the complications...but sounds like he is now on the road to recovery. I am 8 years post colon removal, Jpouch and take down.

I'm not familiar with the support board suggested earlier, but I spent many hours lurking on the jpouch.org board.

Even after take down i have found that hydration is something i have to stay on top of. And after this surgery...take down will be a breeze.

Hugs and Prayers for speedy healing. I'm happy to share any of my experience with the ostomy or jpouch if you like. Hang in there as each step will bring periods of adjustment.

 

[BriarfoxinWA]

I will keep you and your DH and family in my prayers

 

[WebmasterMaryJo]

I'm glad you had a good day today. We're here for you.

 

[figmentswife]

Fellow Jpoucher here to say you and dh are in my prayers. Sorry to hear of the complications...but sounds like he is now on the road to recovery. I am 8 years post colon removal, Jpouch and take down.

I'm not familiar with the support board suggested earlier, but I spent many hours lurking on the jpouch.org board.

Even after take down i have found that hydration is something i have to stay on top of. And after this surgery...take down will be a breeze.

Hugs and Prayers for speedy healing. I'm happy to share any of my experience with the ostomy or jpouch if you like. Hang in there as each step will bring periods of adjustment.

I do have lots of questions about the Jpouch. I will be sending a private message when I get on my computer

 

[figmentswife]

DH has had a good day. Today was bag change day, to change the small wound beside his stoma. However, there was no packing in the small wound. I was a little freaked out even though I am sure it fell out in the bag, so I called the nurse...... 5 hours later I called again, because no one ever called me back.

My dad and one of my brothers are coming over tonight to watch a game, so I just may go hang out with my mom to get away.

I have been in my jammies all day, but I am still so tired.

 

[dsneprincess]

Sending more prayers & pixie dust as you deal with this. Best wishes for your whole family. Try to let some things go, there is plenty of time to do the unneccassary things, like dishes & laundry. It doesn't all need to get done everyday, that's what paper plates are for! Easier said than done, I know, but try to let some things go for your health. You must have a super supportive boss! Sending prayers for your family & the other poster who mentioned her husband has been struggling to recover.

 

[Sheree Bobbins]

I hope things get better each successive day. Remember to take care of the caregiver, too! Take it easy on yourself. I'm praying for support for the both of you.

 

[Dan Murphy]

Glad to hear things are progressing in the right direction. Prayers for you hubby, and certainly you also. 's

 

[charming23]

Sending good thoughts your way. Being a caretaker is a tough job. Do not feel bad about asking for help and taking time for yourself.

 

[mickeysgal]

Aww...hope he gets better soon and that you get some well deserved rest.

 

[roseneumann1]

Good thoughts and comfort headed your way. Sometimes life can be a little overwhelming. Special prayers for your husbands quick recovery.

 

[figmentswife]

We just got back from our PCP and she says that things look great. She was impressed with my ability to unpack and re-pack DH's wounds, and how well I was handling it. I told it wasn't so easy the first couple of times, but now, it's nothing.

He is feeling good and eating good. Wednesday will be his last day of antibiotics, and today they took him off his blood pressure med's.

He still has weeks of recovery for the wounds, but it looks like he is on the right road to get there. We see the surgeon on Friday, we are hoping she gets the drains out then.

 

[figmentswife]

DH went for a scope test Friday - the results were NOT what we were expecting.

The j pouch is infected and they found a separation beside the pouch. Also, the pouch is inflamed. They put him on 2 antibiotics for 2 weeks.

Dr said, no way he can have the take-down surgery any time soon, they may have to go put another drain in (the separation area is infected) when they recheck in a couple of weeks, and he may actually have crohns, not UC. She took biopsies and we should now more in a couple of weeks.

 

[DisneyFan32WI]

DH went for a scope test Friday - the results were NOT what we were expecting.

The j pouch is infected and they found a separation beside the pouch. Also, the pouch is inflamed. They put him on 2 antibiotics for 2 weeks.

Dr said, no way he can have the take-down surgery any time soon, they may have to go put another drain in (the separation area is infected) when they recheck in a couple of weeks, and he may actually have crohns, not UC. She took biopsies and we should now more in a couple of weeks.

I'm so sorry you keep getting setbacks.

 

[mckryan]

Prayers for your husband and you. Being a caretaker has to be tough, and knowing that you still have drains and such to still deal with has to be overwhelming. Hang in there!

 

[figmentswife]

I think it was much harder when he was in the hospital. Yes, I have to take care of him here at home...change wounds, change bag and such, but being home has made it a little easier.

I lost my job a week ago, and to be honest, it is easier not working right now.

 

[mckryan]

When my dad was in ICU for 5 weeks, I know how emotionally and mentally exhausting that was, so I can understand how it's easier at home. No beeping, no nurses waking you up all night long, etc.

I'm so sorry to hear about your job.

 

[figmentswife]

When my dad was in ICU for 5 weeks, I know how emotionally and mentally exhausting that was, so I can understand how it's easier at home. No beeping, no nurses waking you up all night long, etc.

I'm so sorry to hear about your job.

How in the world did you get through 5 weeks???? The 2 weeks was hard enough.

 

[mckryan]

It was a total of 6 weeks in the hospital. It was tough - really tough. He was sedated through a lot of it after lung surgery. They had trouble bringing him out of sedation in ICU and finally had to do it cold turkey, and that was a really scary day. He was never really quite right after that hospitalization, although he lived another 12 years. I learned pretty quickly what all the numbers were on the machines and could gauge his condition in a couple of minutes after I looked at everything. Luckily he was done with his drains by the time he finally came home.