What a difference a year makes!!

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Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/15/2008 9:41 PM (GMT -6)   
Hi Everyone - haven't been doing much posting.  I keep checking in and reading every other day or so.
 
6 month follow up scheduled on Monday in Jacksonville.  In the past 2 weeks for the first time he is able to play golf and pickelball and come home and NOT be totally wiped out and head straight for bed and stay there for basically the rest of the day.  His stamina seems to be the best it has been in over a year.  Hope it continues for him.  Some days very tired - so he rests and doesn't push it.
 
The Azathioprine at this dose definitely must be what is the key for him at the moment.  His BMs are just ok - could be a lot better - but for the most part the urgency and frequency are under better control.  Sometimes he has to make a mad dash to the bathroom but no accidents.  We can go out to a movie now and if he goes to the men's room prior to the movie starting he can sit through the movie which is a big deal.
 
We stopped the Fosamax as his joint pain - shoulder and hip were really bad.  Much better now that he stopped that medication.
 
So all in all in comparison to a year ago when I was a total basket case and found this forum and needing copious amounts of information and guidance we are in a better place at the moment.  We appreciate every day that the UC is at least tolerable even though he is not in a true remission.  Without your help and suggestions things might not have worked out this way.
 
Having hit rock bottom and being where he is now - he is not complaining one bit.  He has learned to accept and adjust to what is now the norm for him.  If this is as good as it gets for him I hope it lasts quite awhile before the UC decides to act up again.
 
 

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


quincy
Elite Member


Date Joined May 2003
Total Posts : 30503
   Posted 5/16/2008 3:07 AM (GMT -6)   
How awesome to hear of your husband's much improved progress report!!!
Lots to deal with for... both of you.


Normal is so subjective....it's great he's doing well. A day at a time equals to a lot when you look back one year.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 5/16/2008 8:33 AM (GMT -6)   
What an uplifting story. I'm so glad to hear your husband is doing better. I too was thinking about my UC the other day, and Quincy is right, normal is subjective. I've gotten used to know my body's signal and about how much time I have to make it to the bathroom, when I'm tired, etc. I'm so glad that your husband has come to know his body; and happy to hear he's out doing the things he like to do. You are an awesome wife seeing him through these tough times, so kudos to you too!
Carol

Remicade - will have my 21st infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 5/16/2008 8:52 AM (GMT -6)   
Glad to hear your hubby is doing so much better. If he can do the things he enjoys, then that is quality of life! Hope he stays in remission for a long time!
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/16/2008 9:07 AM (GMT -6)   
That's awesome news! I am glad your hubby is able to do things he enjoys again. Very inspiring.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/16/2008 9:35 AM (GMT -6)   
At times it's hard to believe it's been a year! Day by day, things seem to go slowly, but looking back - time flies :)

I'm so happy to hear that hubby is doing so well - especially when looking back to this time last year.

Kudos to you both. We hope to see you around on occasion for a positive update - but we all know that when we don't see some people around for a while, it's because they're out living their lives!!!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5175
   Posted 5/16/2008 5:13 PM (GMT -6)   
That's terrific news when a UCer can experience enough improvement to do enjoyable outings fairly often. May your husband continue to make progress toward real remission. For sure some of the load has been lifted from your shoulders, too, and you deserve this break. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/25/2008 6:38 AM (GMT -6)   

Hi Everyone....thanks for the positive replies.  Well we went to the Mayo last week and before leaving for the 3 hr drive the normal getting ready and bathroom trips before heading out the door.  Well on the 3 hr drive up we needed to make 3 trips to a bathroom which was so unusual.  Couldn't figure that one out.

Had the lab work done and saw the Dr 4 1/2 hrs later that day.  The Dr was not altogether pleased from 6 months ago and was hoping things would be much better.  Hubby made him aware how pleased he was personally with getting his life back for the most part and finding a way to deal with this overall.  The monthly monitoring of the imuran he says is fantastic which is a good thing.  His reliance on the pain meds bugs him and he wants him off them.  Upon examination there is a fissure there and he explained all about that and what he needs to do to try to heal it which is accounting for most of the pain.  Weird......after the exam as painful as it was it seemed to "paralyze" everything as he felt better and the 3 hr drive home was uneventful...lol...go figure!!!

He thinks his joint pain is primarily attributed to the zocor that his primary care increased from 20 to 40 mg last November and not the Fosamax he started in August with no ill effects.  Soooooooooooo now we will re-introduce the Fosamax and cut the zocor back to 20 mg and see how that goes.  He sees the primary care in August which will give us time to see if the joint pain improves.  The Mayo Dr really wants him on a bone building med.

Having 6 different doctors for his different ailments is a royal PIA trying to keep everything straight and not directly conflicting with each other.  I really like this Mayo Dr as he seems to see the "overall" picture the clearest of all of them we think.

So we will go back in November for 3 days -- another colonoscopy as he wants to see exactly what is going on in there now - meet with the colorectal surgeon and see how that fissure is doing.  Also regarding the joint pain (hips and shoulders primarily) I will also ask if it is not better for other tests to delve deeper into this to get a better diagnosis if the cutting back on the zocor doesn't help.  (He has been on 20 mg for almost 5 years with no symptoms and maybe the 40 is just too much....he may need a different one like Zetia that I am hearing a lot about)

Gonna try the canned spinach a few times a week and see how that is.

As I said - on a scale of 0 - 10 and having been at zero a year ago he just finds a way to not let it take over and depress him.  Based on a lot of what I report to him from others much less fortunate on this community he knows he is in much better shape overall.

Enjoy your holiday weekend...........I know when we worked we looked forward to the long weekends and additional day off.  Take care everyone.


61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month

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