Hello All, Back from the hospital - 10 days total in the place

I got out on Saturday last, and was in for 10 days.  The ostomy part seems to be doing ok, but I do feel like I have been run over by a bus I am so tired and just not"right" either in my body/mind/spirit - sort of everything is off kilter. 

The pain was extreme - as I knew they would be as I process pain drugs very very quickly - oxycontin might as well be penny candy for all it works for me.  I am on hydromorphone 4mg every 3 hours.

I wouldn't need that actually for the ostomy, but rather for the rectum removal.  I have had leaks from the rectum every day since the third day after surgery...and the wound vac has not been a resounding sucess because of a either a leak in the plastic sealing they put on - or the bloody machine wasn't plugged in in the hospital for two days.

The pain in my rear is excruciating, and when the visiting nurse comes - now everyday because of the problems - it hurts so badly when she removes the sponge.  No one I think prepared me for that type of pain - like a hot dagger - and then the 10 hours for the tissue to calm down.

Has anyone else had this?  They say I will have the wound vac for 4 weeks - but I can't imagine 3 more weeks of this type of pain.  I also will be out of heavy drugs by then - and I think they will be resistant to give me more.  I would have to say this is a level eight pain.  My doc is aware of it - annd we are all taking a wait and see attitude.

Yesterday my wife had to un do my plastic seal for the vac - as I was leaking - and bless her heart, she cried with every groan of mine and bite into a rag so I wouldn't let out a yelp.

My MIL says I should be back in the hospital and is ranting about me being here.  I guess I am a threat to her and my wife's health by the wound draining.  She only comes near me with a mask and gloves.  I think my wife will ask her to go home now - even though she really does need the help.

I don't mind the leaking itself - and it is not too much they say - and the nurse says the wound looks good except for svere skin irritation form all the putting on and taking off of adhesives where there was surgery.  

My MIL says she doesn't see the improvement and that her daughter is wearing rose coloured glasses.

I am sort of confused about my situation - the nurses who have come - one the head of rectal cancer and surgery says that time is needed to overcome this and it will improve...but then my MIL says that I can get Sepia, Staph, MRSA, and host of other things that could kill me and infect her and the rest of my family.  She convinced my wife to have all our pets boarded or kept away from me - now not just for the jumping on my tummy, but the animal germs they will get into my rectum.  So, I am relegated to my room - and have the energy to use the PC from time to time.  Please forgive me for that.

Any advice or experiences with those who have had had their rectums removed - and if you were in pain - please give me some advice and perspective.  As I said, I feel off - from pain, drugs, the surgery, and my MIL.

Thank you and I thought of you all while I was in the hospital.  I couldn't wait to get back here to get some much needed support and some virtual hugs (but gently though! hheheheh).

With love to all,

bob 

Hey Bob, it's me Eva, from the UC board! I've been following your story- sounds good, but the pain you're currently going thru does not! I wish I had something to tell you, some reassurances, etc. BUT- you absolutely need to get rid of your MIL now! I cannot even believe you & your wife are letting her spew her wackyness in your house. Just tell her to go, right now, & tell your wife that you need to be away from her to concentrate on your healing. It's all about you right now, not your MIL. She sounds just unbelievable...... the nagging & unhappiness are not conducive to healing! And having your pets around is! Please, though your wife may think she needs help, your MIL is hurting, not helping. I hope your pain gets better, I truly do.

Bob, I'm so glad, for the most part, you are doing well! First of all, make sure your MIL goes home ASAP! That alone will be a great healing process for you. If your wife needs help around the house, ask a neighbor, a neighbor's teenager, a local church, or hire someone. If it's to help her help you, look into a visiting nurse if it's covered. It doesn't sound like your MIL is there to help you though.

As for your rectum healing, I have no information on that as Bratcat did not have that type of surgery. I do commisserate with your wife crying along with your pain. I felt the same way when Bratcat had to learn to peel off her ostomy appliance.

Just keep remembering that it has only been 2 weeks since your MAJOR surgery. You are doing great. And the doctor is in close contact with you. That's wonderful.

As for the pets, I'm a firm believer in having them around as soon as you, your wife, and your doctor feel it is OK. I know our cats were a big emotional support for Bratcat. And they seemed to know not to jump on her bed in the beginning or walk on her when she was laying down. They just snuggled near her.

As soon as your MIL leaves, hopefully soon, have your wife join you for some special time alone. Even if it's dinner with you in bed (and dinner is something simple). Knowing you and your wife they way you have described your relationship over the years, it's not the fluff and material items, it's just being able to be with the one you love the most.

Be well. Be happy. Gentle cyber hugs to you!

Hey!  Glad to hear your surgery is over!!  Just remember to be good to yourself ok?? And that includes not taking any crap from your neurotic MIL.{{{ Sending HUGE cyber hugs your way}}...Cheryl

Do you always have drains when they remove your rectum?

I really hate to say this but you should be prepared for this MIL not to go away. If she hasn't been able to see by now that her comments are not helpful and she should offer help quietly, she'll never get it. I had the nicest of all MIL's, may she rest in peace. We all miss her so much.

That said my own mother is like your MIL Bob. The only thing that helps in my case is that my mother doesn't drive. I ordered everyone that would potentially drive her to the hospital not to, that they were doing me a favor. The patient.

Yes my mom throws this up in my face, 10 years later, how cruel and insensitive I was for banning her from my hospital room but so freaking what! Each time I just absolutely stare at her when she goes on and on about how mean I was to her.

People like this will absolutely never be able to relate well with others. It's just a fact that you have to come to terms with.

But I do wish I could just show up at your home and take your MIL off your hands for a while. Boy do I ever wish we could all do that for you. We could share the responsibility, HW style. Each taking a day with your MIL!

Hang in there.....

Bob,

Bring the pets home and send the MIL away! Really, she is not doing you any favors by hanging around with gloves and a mask. Honestly, did the nurses in the hospital wear masks around you? I doubt it. You don't need her behavior to stifle your recovery. After all this is about YOU and not about HER.

I didn't have my rectum sealed but I have heard it's painful. However, the pain should be receding not staying constant. So if this isn't the case with you you should go to the doctor to make sure it's not the start of an infection. Hang in there it should only get better from here on out.

Sue