I wish this was all a dream

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Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 8/20/2007 8:55 AM (GMT -7)   
Hi everyone,
I find it odd that veggies I use to be able to tolerat prior to my surgeries are causing so much discomfort and D now.  Granted my stress load right now cannot be helping.  My mom has IBS and stress causes her to have D but she suffers a lot from C as well.  Prior to my recent surgeries I would have 2 or 3 days with no BM then with the aide of colace (the one with the laxative) I would go about 3 times on the next day then the cycle repeated.  Mirilax worked well for me for a while till the perforation happened.  I kind of wish I had my ostomy still (for few reasons such as lack of pain as far as pooping and eating went) I still didnt like the fact that mine leaked like every 2 days and I had an abscess that wouldnt quit.  I use to be able to tolerate things like tomatoes, spinach, lettuce etc with no pain or D, not so much now.
My great uncles wake is tonight and funeral tomorrow which I cannot make since my joint pains are so severe I hardly slept (the more recent and probably most painful is my hip areaon the R side).  The area that hurts though is my upper inner thigh (underwear leg line) so I annot really even place  a lidoderm patch on it and I am walking like a darn gorilla since the L side knee and ankle are swollen and painful.
My husband and I went to visit my nana at the nursing home yesterday she was Dx with Alzheimer's last month (probably middle stage).  She fell Thursday night out of the chair she was sititng in and ended up with an abrasion on her elbow and 2 large bruises on her upper chest.  The sitting room where this happened is right outside the nurses station.  She had been working with PT and doing well with a walker however she would randomly get up and walk on her own and my papa would let her go off alone at the time.  This was not the case this time being that no visitors were there at the time so he didnt let her walk off.  she had her little alarm button attached to her so it would alert nurses if she got up etc.  She also had this thing where she would slide and slouch down in the chair also she was having bad anxiety tremmors.  No one really knows how she fell and later that night during her vitals they found she had a temp, the next day after more tests she was found to have pneumonia in both lungs.  They started her on an IV Ab.  This AB should have made her a lot better by today (my mom works in the pathology Dept in a hospital and she asked a Dr about it.  She has been bedridden since the Dx of pneumoia even sleeping with her eyes open and appeared to moan and still have her agitation and anxiety issues.
I called my mom today (st work) they told me she took today and tomorrow off (she was only supposed to take tomorrow off for the funeral since it is her uncle (my nanas bro in law).  I called her at home and she told me that the NH called her last night saying that she wasnt doing well.  My mom and dad went to see her and they had her in one of those reclining chairs with the padded arm across the front so she could not fall out of the chair, they also had her behind the nurses station.  The other days they had her on O2 but not yesterday.  When they did her O2 levels when we were there yesterday they were 93% so the just kept her on room air.  Last night she was all full of mucus they asked if she had a DNR order and it was a verbal thing that was what she wanted but nothing in writing so my papa had to sign an DNR order.  They are giving her morphine for the pain her Resp rate last night was 33 norm is 12- 16 and in addition to the pain killig morphine does it also lowers resp rates.  She had a fever of 102 last night and they gave her a tylenol suppository which brought it down slightly 101. something cant remember exactly...mind is all over the place.  Today her temp is 97.something again cant remembe exactly.  This NH she is in is actually run by Roger Williams Hospital and has a dementia ward, cancer ward, you basic NH floors, and a hospice building.  At this point Hospice is what they suggest and my mom as well as my nan's sister in law agree.  They have had people last 3 years in hospice there.  She is so frail osteoporosis badly my mom was holding her hand yesterday during one of her tremmor/anxiety attacks and later that night her hand was bruised.  She has not been eating (occassionally she will eat very little) so she really doesnt have much to fight this with.  She (before the slouching due to oseoporosis) was 5' 1" and was at her least (before the lack of eating) 85 pounds. 
Just had to get this all out, I dont want her to suffer and hopefully with the hospice she wont, but seeing her this way makes us suffer knowing how she use to be.  She had a big personality change after her Dx with breast cancer in 98 but she has been cancer free since her Tx for it.  My papa holds her pillow at night still in denial that she will be coming home.  Their 58th anniv. was July 2.  He is going to be 80 in December and she is 78.  My mom and I are both only children so through all of this it has been a big strain especially since her health spiraled a week and a half after I was discharged from the hospital with my reversal surgery.  She had 2 trips to emergency rooms prior to the one that they admitted her with.
I am suppossed to return to work Sept 4th ( if all goes well with me stopping the fentanyl this week, I have more patches if things dont work out there plus doing it during the week gives me better access to my surgeon if things dont go well with withdrwals).  I have lost 2 family members so far since I have been out of work due to my CD issues, I know it is coming with my nana I just hope if it happens soon I hope they will understand at work if I have to take more than the allotted 2 days off.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

Veteran Member

Date Joined Nov 2005
Total Posts : 722
   Posted 8/20/2007 9:08 AM (GMT -7)   
You have a lot going on.  You must feel like your world is crumbling all around you,dragonfly. Sorry you are going through a tough time. Hopefully, things will turn around soon. Keeping you and your family in my thoughts and prayers. (((((((((hugs))))))))))
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 8/20/2007 10:00 AM (GMT -7)   
(((hugs))), DragonFly. I"m sorry you have so much going on in your life that isn't making it a bed of roses.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 8/20/2007 10:14 AM (GMT -7)   
Wow, Dragonfly, it certainly is tough for you right now.   You are in my thoughts and prayers.  Try to relax and breathe deeply when you can.   

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2007 11:13 AM (GMT -7)   
Sorry you have all this going on in your life right now. Will keep you in my prayers.

As to your questions on diet after surgery, I have had two resections, and my diet has completely changed. There are alot of things I can't eat anymore. Everything but the blandest, easiest to digest items are now out. That includes alot of fruits & veggies, especially tomatoes and red meat. The surgery really changes things for us diet wise. You will probably need to keep a food diary to see what you can and can't tolerate. Good Luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/20/2007 7:23 PM (GMT -7)   
Hi The fact that her temp. went down is a good sign and when the elderly get sick it is probably normal for them to ask about DNR . Sounds like you love her very much. I had to get over the departure of my youngest brother and it still is difficult. Life will get better and time will ease the pain .Your Mom is lucky she has you in this hard time and I am sure you will help each other threw these times. Thinking of you often . lol gail

Regular Member

Date Joined Mar 2006
Total Posts : 195
   Posted 8/20/2007 8:25 PM (GMT -7)   
I am so sorry.
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