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

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 5/1/2009 8:16 AM (GMT -7)   
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 

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 5/1/2009 8:34 AM (GMT -7)   
Sending gentle virtual hugs your way!!

I'm so sorry to hear of all your pain, that sounds horrible. I haven't had to deal with that, as I am a candidate for j-pouch and reconnection at this point. Hang in there!!! Don't worry about future meds at this point, let's assume your doc is going to provide you with whatever you need to stay as comfortable as possible.

(Oh, and hopefully your MIL can scram -- doesn't sound like any help is worth that horrid cost!!)
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 5/1/2009 9:13 AM (GMT -7)   
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.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/1/2009 9:19 AM (GMT -7)   
bob,

Say farewell to your MIL!!!! She really does not know what she is talking about. Did dirty baby diapers cause her to wear a mask? Does she keep her screens closed to the outside air that could carry germs into the house? Does she cover herself in plastic wrap to avoid the germs the animals bring in from outdoors? Shall I keep going on with me questions? I think you get the point... too bad that she doesn't. SOrry for ranting about her, but it is TOTALLY unfair that you are being treated this way, and relegated to your room, for Pete's sake. I'm livid and I don't even know her.

The pain can be pretty bad in the rectal area. Mine was for a few weeks, and then all of a sudden, it was better, tolerable. Be totally outright and voice your pain level to your doctor. He can't feel your pain and therefore has to rely on you to voice it to him. If what you are taking isn't working, maybe they can give you something else to alternate with what you are taking to get it under control.

Bob, you hang in there. We are here for you and your wife. Keep posting and talking with us.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 5/1/2009 9:30 AM (GMT -7)   

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!


--Mom of bratcat (18 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/1/2009 9:33 AM (GMT -7)   

Bob!  Glad to hear you are home recovering!!!  Now, just tell the MIL to go home and your mind can recover, too!!!

I didn't experience the pain that you are having with the wound vac...people did tell me it's not pleasant but I didn't believe it...you could go to the wet to dry packing if the pain is that bad, just ask your doc.  It doesn't heal as quickly, but it does heal and the pain is minimal.

Make sure you stay vocal on the pain level...let your doc know, so they can refill your script when you need it.
 
I'll be thinking of you and sending good vibes your way!!

Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 5/1/2009 11:32 AM (GMT -7)   
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

Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
 
Ileostomy Reversal March 9/09


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/1/2009 12:28 PM (GMT -7)   
get rid of that MIL, maybe board her with the pets???
Sorry that was mean but she is causing so much trouble for you! And she is just making yall paranoid about stuff that is not a problem.
Im with peggy on all this mask and glove stuff, maybe she is gonna wrap herself in bubble wrap too? Its good to wash your hands after touchign something like that, but all this other stuff is not necessary.
I didnt have a wound vac but my bottom did hurt something awful! and it hurt longer than anything other than my back. I think part of the reason is that you have to sit on your butt sometimes. You can keep from putting pressure on your stomach. DONT try sitting on pillows or those donuts you might think that makes it better but it made it worse to me anyway.
Well, glad you are home and hope you get better soon!

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 5/1/2009 4:11 PM (GMT -7)   
Do you always have drains when they remove your rectum?

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/1/2009 5:35 PM (GMT -7)   

Hey Bob,

I just wanted to give you a big (((HUG))) :-) You are through the worst of it and are healing now, so every day is going to be a little bit better than the day before. Please talk to your doctor about the pain, so you can take something that will give you relief.

Your MIL needs to go stay somewhere else, because you do not need any unneccessary stress right now.

I've always had my pets around me after surgery. In fact, I had emergency surgery 11 days ago for a small bowel perforation, and my cat in on the bed with me right now and my dog is on the floor next to me. They bring me a lot of comfort and love. I have a nurse who comes to my house to give me IV antibiotics. She is very fussy about germs and hasn't said anything about me staying away from the animals.

I hope you start to feel better soon!


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 5/1/2009 6:40 PM (GMT -7)   
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.....
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Winnipeg
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/4/2009 8:20 AM (GMT -7)   
I just had my anus and rectum removed and 90% of my post op pain was due to bladder and catheter issues. Not sure why. Ask your nurse if based on your description your pain could have anything to do with bladder spasm or infection. Just to be sure. No one on my team figured it out--my dad and I did.

By the way where I live medical marijuana is legal and I find it to be a potent analgesic especially where morphine and dilaudid failed me dismally. If this is available to you please consider it as the effectiveness is miraculous. I fall asleep a while after smoking and tend to sleep for 2-3 hours.No weird dreams or anything like that.

I find Vicodin works well for me, also.

Winnie
in remission
anal cancer
colostomy

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 5/4/2009 8:49 AM (GMT -7)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 5/4/2009 9:44 AM (GMT -7)   

Hi Chewy!

So sorry to hear about your recovery being so painful. I didn't have my rectum removed yet, so I didn't know it would be so painful. BUT I did have drains in my abd. and the home health nurse had to change my old ostomy site packs and that was unpleasant. But it does and WILL get better! Hang in there.

Wishing you a better recovery,

Chassity


Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

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