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part 2 of 3 construction of jpouch tomorrow

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Posted 10/23/2012 5:54 PM (GMT -5)
My husband Rich had his large intestines removed on March 3rd after 1 month in hospital and knocking on deaths door.  Do to his weakened state they did not construct the jpouch during this surgery, he was sent home on March 19th, after obstuction complication.  Back in 4 days later, due to fever, they opened incision (done laproscopically but still with 3 inch scar) and left open, as there was an abcess behind incision.  Since that time he has been hopitalized with a hernia behind the stoma in August, and then a week before the 2nd surgery (jpouch) in September, he again came down with a very high fever and after 6 days in hospital, mri, mra, ct scan, lumbar puncture, doctors thinking West Nile, menengitis, finally diagnosed with Lyme disease.  He is now scheduled to be at hospital at 6 am tomorrow morning for construction of jpouch.  He has bi-polar, hi anxiety, panic attacks, and rage issues at times. Needless to say, this will be the first surgery, that he is actually home day before, and I will be driving him tomorrow. I am so nervous, trying to stay positive for him.  Doc said surgery can last anywhere from 7 to 12 hours. I asked him last night if there was any part of him that is even remotely happy that after so many postponments that part 2 is actually going to hap pen, bringing him 1 step  closer to this being over after suffering with uc and at least 50 hospital stays over 17 years. His answer to me was, "Julie, I have resigned myself to the fact that it will never be over for me." "there will always be set backs." Please give me some feedback with how to cope, what I can expect with this time around, and what to say to keep him positive through all this.  I am running on empty, it has been a rough year for him. Please say a prayer for him tonight.  Thanks to all.

Julie

Posted 10/23/2012 7:18 PM (GMT -5)
Wow Julie - what a year for you and your husband! And I can't imagine dealing with UC for 17 years (I only dealt with it for 2 years). I'm going to start this out kind of negative just to try and provide perspective on what he might be dealing with. I am a three-parter as well. The thought of having the second surgery is both exciting and exhausting (knowing that I will have to recover all over again...just to have a third surgery in the future :( ). It can be very exhausting and disheartening at times. I've personally had small complications after my subtotal colectomy and it is very frustrating because I'm supposed to be better! You both have been through a roller coaster ride...not just this past year but for the previous decade or so. It is so hard to get your spirits up just to be disappointed again. So I can see where your husband is coming from. The truth is it can seem like a long road yet, even after the second surgery. I think there's always going to be at least some small issues after surgery (even if it's just trouble with the loop ileo bagging system).

Now I'll turn to the positive...

While this surgery is different, he has had previous experience with bowel surgery and with having an ileo...so not everything will be new thankfully. "Hopefully" your husband was so sick before the first surgery that this one will seem "easier" (it's weird to use "hopefully" in this instance). Unfortunately I've heard that this second surgery is a butt kicker (I haven't personally experienced this yet). But, I've heard the third surgery is a relative breeze. After this surgery, he should start to feel/be better and NOT have to deal with other major set-back in the future. 90% of people ARE "happy" with their jpouch (according to Cleveland Clinic questionnaires). That is a very high percentage of happy people! There will be an adjustment period, but he is so much closer to having the end in sight.

Figure out if there are any movies, tv shows, books, etc. that you husband wants to read/watch. His recovery might suck at times, but it can also be a time to get to do the quiet things you don't get to do too often.

Everything will be fine with the surgery. Just take it one day at a time. I will definitely say a prayer for both of you.

And something to think about for after surgery...does he see somebody for his anxiety, ptsd, etc.? It can be very helpful (I have anxiety issues too). If you are up for it, you might consider seeing somebody as well. It's hard to see a loved one dealing with so much.
Posted 10/24/2012 3:45 PM (GMT -5)
Another anxiety, depression, and panic disorder sufferer right here! It is so tough because these truly grueling surgery and recovery processes just amplify all of this symptoms.

For me personally, step 2 was the most difficult of the surgeries to recover from. It just takes a lot out of you. I believe my surgery was about 8 hours. Just be prepared for him to need a lot of time to gain some energy back. On the plus side, I already understood ostomy care so that uphill battle wasn't there to deal with.

I imagine it has to be really tough for our partners/support persons to watch us go through the surgery process. One thing I can suggest is just to listen and don't down play his feelings. He needs to be able to be sad, worried, angry, etc. Also, if you notice in the hospital that his emotional state is really off then you might consider talking to a nurse and requesting a social worker or psych consult. They may be able to help him deal with the mental fall out of the whole illness and surgery process. I don't know if he is on any antidepressants, etc but I had to have my meds adjusted due to the shorter transit time with the loop ileo versus the end ileo I had initially.

I wish you both the best of luck and I hope he gets the smooth and speedy recovery he deserves!
Posted 10/30/2012 7:29 AM (GMT -5)
thank you so much for your information, surgery took 10 hours, he tried to get out of bed the day after and sit in chair, he was doing ok, but now said the pain is back. I am unsure if this is a weaning of the pain meds,(withdraw) the sweating and mental stuff that goes with the prednisone that he is on from surgery, depression from the hospital stay or a combination of all 3. I know i have to be positive in order for him to be positive, but i thought that this was going to make him better, and he still seems to be in some sort of pain, at times he calls me in the middle of the night from hospital for me to please help him or let him die. He will hopefully be discharged over the next day or two. Maybe being home in his own surroundings will help his recovery.
Posted 11/1/2012 9:39 AM (GMT -5)
I know the hospitals due to insurance reasons need to get you out of there ASAP but please insist they get the pain under control before releasing him. We did that and got a few more days in the hospital where they got his pain in better shape before releasing him. We stayed nearby for another 4 days as I was so paranoid to get him home and need to drive 3 hrs back to the hospital if anything went screwy in the next few days.

I hope he is doing better today and you too. It is so tough to see them go through this....I shed a lot of tears in private in the shower and bathroom. Staying strong and upbeat for them is paramount when they are so fragile. It helps so much if you can keep up that front for them.
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