While my mom was at the NH Sunday or Monday she went in her room (my nan usually is in the sitting room most of the day watching TV with papa) and looked on her cork board. Luckily she did because my papa didnt see that there was a paper about
the monthly family meeting. The meeting was today so my mom went to work early left for the meeting and is now back at work.
My mom wrote a letter of things that have been going on tremors, pain in her mouth etc. She included her past meds, doses and length of years on them. I guess in the hospital they took her off of her Paxil in about 3 days, she had been on that for about 8 years. That could be contributing to the tremors she also talked about the adivan and they said you can stop that cold turkey...not her though since she had a nervous breakdown due to hypocondria after her mom passed in 1988. She brought the oral pain to their attention and my nan while at home use to take about 1 hour for oral hygene at night and probably 15 mins in the am (denture cleaning was done at night) She would brush her remaining teeth, floss use the water pic she had 1 case for the top dentures and 1 for the bottom ones. We found out that no one has brushed her teeth (she has always needed sensodyne(sp?) toothpaste as well) eithr there nor in the hospital she has teeth only on the bottom. My mom use to be a dental assistant for years until arthritis was affecting her hands. My mom went gently brushing and rinsing which my nan said hurt but my mom told her that is normal and will get better the more it is done. The Physical therapist said thatr she does not have the tremors while walking. My mother expressed concern learning that there are seizures that can occur and the patient is aware of them and since she is newly Dx with seizures she also brought that to their attention.
I forget many of the other things my mom informed me of even though it was just a short while ago...I am still on pain meds from my 3 intestinal surgeries that I have had this year. They do have an account that family can put money in so that if the patient wants the hair cut or a manicure the family doesnt have to go down there each time. The haircuts include washing cutting setting and styling for $ 18.00
This next part is not AD related just responding to Howlyncat
Lyn, as for my CD I started flaring about this time last year Dr kept saying you are having D and you typically have C when you flare so it has to be a virus, this kept on for months. In january I had a CTE which confirmed the flare and he just wanted to keep meds as they were...every time I actually got off the pred 2 weeks later the symptoms were back. In Feb I had emergency resection ileum perforated also a fistula from intestine to intestine was removed (I had no idea I had one), complications arose, toxic megacolon, abscesses etc, 2nd Sx was 1 week later had temp ostomy done dumb resident got feces in my incision claimed she didnt need to flush it...wound got infected got wound vac, got readmitted to the hospital 2 more times in March due to abscesses, while my Dr was on vacation his assoc had a drain placed next day no drainage so they pulled the drain. Readmitted first time abscess was back, next day ct revealed it was gone went home a week later. Readmitted 1 week later abscess was back, got drain placed the next day determined abscess made fistula to stoma and incision and was being sucked out by wound vac. Abscess would not stop producing fluid once it got to be between 20 cc and 10 cc a day it no longer decreased in amount. Reversal was done 4 months post op of ostomy due to abscess issues. Five procedures were done in that Sx he had an assoc assist rather than an intern due to the complexity of it. They removed more of both intestines, removed the abscess, reversed the ostomy, removed multiple adhesions, and had to scrape the internal abdominal walls due to inflamation and infection from the abscesses. It has been 7 weeks since that surgery & have a localized infection in the incision but it is superficial so I just have to pack a corner of gauze in it so it wont heal the infection inside...and finally cutting down off of the Fentanyl patches, I have a high tolerance for pain meds and the Oxycontim was not staying in my system long enough to even begin to work (with ostomy I was still able to read the writing on the pill while in the bag), after reversal it was a hope that it would stay in longer but it just would come out when I would use the bathroom.
I had to call my GI this week my joints are swollen and still having abd discomfort he suggested waiting another week or 2 (he put me back on pentasa to try to delay more CD) before placing me back on entocort for a short burst and see if things subside on low residue again and due to all of the stress. Hopefully it will stop on its own, my belly was good until I ate some raw veggies and an orange last week. He also told me that my iron is low ( I have not been anemic in a long time but probably due to my Sx (plus I cannot eat too much red meat without it bothering my stomach...at least before Sx that happened) so I started back on iron pills yesterday he also said that there are some liver changes but he was not worried about that. I wonder if that has to do with the pain meds that i have been on since February. I just called my surgeon this week to mail me a script for the 25mcg patches so that I can switch to that this weekend I have 5 more of the 50mcg but my TDI runs out the end of this month and my husband wont let me drive while I have the pain meds in me. Therefore to return to work I need to get off the pathces (and obviously have the ok from the Dr). I have had the withdrawal when I went down to the 50 from 75mcg ( I started the fentanyl in mid april and jut placed my 5th 50mcg on last night ...they are used for 72 hrs). I am to change the patch again friday and rather do it while I will have someone else at home whiel I have the withdrawals. My nan's symptoms started getting worse about 1 week after I was discharged from the hospital...needless to say its been a heck of a year. Both my mom and I are only children so I cant even imagine how she is staying held together, just lots of prayers and family support I guess....and some xanax now and again but not daily or even weekly at times.
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