I sure hope this is it

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dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 1/6/2008 5:03 PM (GMT -7)   
Hi all,
 
Well I had my fistulagram in mid december, had my colonoscopy 12/20/07 all in preparation for my 4th yes 4th surgery for my CD since 2-12-07.  I hve had this DD for over 20 years now and it took til 07 for meds to no longer help my CD without Sx.  That in itself is great that it took so long before I needed surgery.....but so many in such a short time...I sure am making up for the years with no CD related surgery....although I had 2 other abdominal surgeries non CD related prior as stated below in my sig.  My surgery was scheduled for 1-4-08 but  over the holidays I cought a cold so I had to postpone my surgery and make an appt with my PCP before the doc would reschedule my surgery.  My PCP was on vacation when it was turning to a sinus infection so my colorectal surgeon called in some ABs for me and awaited my PCPs remarks as far as if I was well wnough for my surgery. 
 
My surgery is now scheduled for this Friday 1-11-08.  I have a CD related enterocutaneous fistula that wont heal any other way the drainage increased quikte a bit when I was unable to give myself my weekly dose of Humira on the 28th of December, my GI and I as has my colorectal doc have determined that I need humira weekly as opposed to the regular maintanance dose of every other week.  My GI was happy that I did not give myself the Humira the week while on ABs for the upper respiratory infection.  He was also glad in a way that my CD symptoms increased greatly by just having to miss that 1 shot.  Not only did the drainage from my fistula increase but so did the abdominal pain and joint pain.  This made my GI happy only because he knows I definitly am not overmedicating and that I do indeed have an extremely noticable change in symptoms if I do the shot every other week. 
 
This is what I hope for after surgery.....
I hope that the lawyer I call (I am going to use the same disability lawyer as my godmother did) will be able to help me get social security disability approved on the first go around.  My PCP wants me on permanent disability and never work again since I do not only suffer from CD but many other ailements as well inclusing asthma, severe food allergies, inflammatory arthritis, migraines, carpal tunnel, vision issues from meds, osteopenia, severe anemia even with iron supplements, insomnia etc.  My left lung no l;onger functions fully they even did an MRI to see if my CD had migrated to my lungs since my "normal" breathing test came back as abnormal. 
I hope that after this surgery so many adhesions he has to remove since I vomit from obstructions from adhesions and get constipated from the adhesions will not return.  I am tired of being nauseaus every day and vomiting most days.
I hope Humira continues to help me post op and finally place me back in remissin with no more fistulas ever....I know the ever part is a lot to hope for but at this point I need to keep my spirits up somehow.
 
If I have no complications I also hope to start a family this year.  The GI said if at 6 months I feel well and have had no surgical or CD complications we have the okay to start a family. 
I hope to get all these darn medical bills paid off or written off especially since had I remained in the hospital the insurance would have covered 100% of the wound vac but since I took it home they only cover 2500 per year....so I am getting bills for 1500 just for the vac...cant believe insurance would rather pay over 1000 per day just for my hospital room and the vac on top  of that plus the other things u pay for while hospitalized rather than 120 per day for the vac.  even my doc said to fight that....my co pays are insane 250 per hospital ADMISSION...150 if it is an er visit if not admitted crazy huh
 
well wish me well and luck this time around!
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
 
 
 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/6/2008 5:26 PM (GMT -7)   
I wish you well and will offer prayers for you.

There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.
-- Orison Marden.

Kitt


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/6/2008 5:35 PM (GMT -7)   
My prayers and high hopes are with you as well dragonfly. Insurance sucks and not having any sucks even more, i'm sure we can all agree on that one. Question: I started my first dose of humira last week. How has it helped you? how soon did you start feeling better or noticing it working?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 1/6/2008 5:39 PM (GMT -7)   
Posts like yours keep me going.

All I can think to say is I know you will get through it and when you do I hope you post a follow up, cause as crazy as it sounds, while you are looking for help you are helping others :)

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/6/2008 5:40 PM (GMT -7)   
Hi Dragonfly, My prayers are with you and best wishes.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 1/7/2008 9:55 AM (GMT -7)   
The humira helped with the drainage from my fistula within a few days after the 1st loading dose. It almost stopped completely then time came when I was due for my next set of shots and the drainage picked up a lot. I have only been on it since Sept 21 07. I started it as a weekly thing in November since I was having increasing symptoms when it would be getting near 1 week after the last dose since the regular dosing is every other week. The joint problems took about a month and a half to 2 months before I saw a change in that. I was just amazed at how my joints and fistula reacted when I had to skip 1 week of the humira. I am not going to be able to use it this Friday eithr because of my surgery...I will be on enough pain meds I hope to combat the joint pain especially that which I get from Pred since I will have to go back on that for the Sx and for a cpl weeks following. I had more diarrhea when I was unable to have my weekly dose as well....nice break from the constipation I battle while on the fentanyl and dilaudid. Hopefully the humira will place me in remission for a long time after now that we know this is helping.
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
 
 
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 1/7/2008 1:53 PM (GMT -7)   
Good luck & best success. My prayers go with you. And get better soon!

Matthew

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/7/2008 2:18 PM (GMT -7)   
Good Luck to you!! and ((((hugs))))
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/7/2008 4:14 PM (GMT -7)   
Warm wishes and good luck to you Dragonfly! Just remember that 2008 is going to be a much better year for you...and all of us!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/7/2008 8:47 PM (GMT -7)   
Best wishes Dragonfly for an operation without complications and an uneventful recovery. I tend to believe that people are not given more than they can bear, but you have had enough. Here's to 2008 being your healing year!
Belleenstein:

30+ years living with Crohn's.

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