Newly diagnosed pancolitis. Overwhelmed

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Hydrofrog
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/3/2008 11:44 AM (GMT -6)   
Just released from a 6 day hospital stay. Diagnosed w/pancolitis. New meds include prednisone which spikes my blood sugar so they put me on two types of insulin and yesterday had my second infusion of remicade. I am overwhelemed, first with the diagnosis which was news to me and now the lifestyle changes. Here is how I got to where I am today.

In Sept 2006 I was diagnosed with stage IIIA breast cancer. Had severe intestinal distress after my second chemo (TAC taxitatere, adriamyicin, cytoxin) treatment. Was sent to a GI who mentioned begining signs of right side UC. Continuing cancer treatment was top priority and the UC symptoms went away.

June 2008 bloody diahrrea began no pain/cramping. Sept was put on Asacol, had adverse reactions and exaserbation of symptoms. The GI doubled the dose to 2 pills 3x daily. Within three days I could not walk due to joint pain, day four severe distress. GI continued downplaying symptoms. Finally when I told him I had difficulty breathing he immediately stopped asacol. Most of the adverse reactions stopped immediately.

In the mean time I had been to a prescheduled appt with my oncologist, who did a CBC. I lost 3 pints blood in the four weeks on asacol and all other blood levels dropped. She recommended a GI Clinic if I did not like the response from my GI for an immediate colonoscopy. With a copy of my new CBC in hand, he put me off another four weeks for a colonoscopy.

Within a week I contacted my oncologist who called the GI Clinic. I was seen the next day and had the colonoscopy the next Friday. I was admitted that day for emergency treatment of pancolitis. After a few days on IV steroids and insulin I stopped loosing blood and BMs decreased. Because of the condition of my bowel, the best choice for me is remicade. I am blessed and pleased that my symptoms are controlled.

Now I am adjusting to the lifestyle changes, I am overwhelmed. I also have ADD and all this organizing and making myself eat 3 x daily is making me crazy. Then trying to make a diet from low-residue food and diabetic food is madness. They're diametrically opposed. I am sticking to soft canned food and protein. I am starving all the time and despritely want something CRUNCHY.

To me the pancolitis is worse condition then the breast cancer. Has anyone else had to begin insulin and steroids at the same time? The docs say that when I am off steroids most likely I will also go of the insulin. But who knows how long that will be. I am tapering down, on 20 mg for another five days. Unknown after that. Had a CBC two days ago my HGB 10.7, the oncologist says may need to stay on predisone for a while yet. How long are people on prednisone?

If you have tips on how to mange steroids, food cravings and insulin Id sure like to hear from you.
Hydrofrog


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 12/3/2008 12:10 PM (GMT -6)   
Hydrofrog,

I wanted to say welcome to HW, however, I am sorry for all your problems. Mine, fortunately, are controlled and I have not had to use the steriods, etc... so for that I can't offer any tips. UC is such a frustrating disease, but the bright side is you have found the right place for support. You will also learn from the other members here from their experiences and we look forward to your knowledge as well.

The food department is so frustrating. It is also individualized w/ each one of us I think. What one can eat the other may not be able too. A food journal really helps so I would advise for you to keep one. If a food works - great, if not be sure to note it in your journal. I have UC and divorticulosis so for UC I am to eat a bland diet and for divorticulosis a high fiber diet. So which one to choose! LOL

As far as your breast cancer - I hope and pray that you are in remission. My mother celebrated 10 years cancer free this past October!

This disease is a lifestyle change! I remember last August when I was "officially" diagnosised I was in a state of shock. All I heard was don't do this and don't eat or drink that - whew I was overwhelmed. However, after I got over the inital shock and found HW my anxiety eased. I found many were going thru the same things I was and still am and that gave me peace of mind.

Anyway, welcome, learn, and I wish you nothing less than the best!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 12/3/2008 6:17 PM (GMT -6)   
I just wanted to say you have come to the best place for help. i will keep you in my prayers also. I am finally in Remission since i was diagnosed. Thanks to 6MP, i'm on 100 mg and starting to live my life again. I was on Predisone for 12 weeks at one time and have been on and off for 4 1/2 years. I'm finally off for good my NEW doctor saids she will never but me back on it, because it doesn't work good for ME. I would get the worst side effects like Bone and Muscle pain and have to be put on painkillers for the first 5 weeks. I didn't gain weight. But i was very moody and didn't sleep at all, maybe 3 hrs. a night if that. I wish you the best of luck. And try sucking on suger free candy. That might help w/ the food cravings. Hope i could help
Mild case of UC~04   Left Side Colitis~ 05-06  Pancolitis~ 07
 
6-mp 50mg ~ 2 pill a day ~~ Lialda ~ 4 pills a day ~~ Librax 5-2.5mg~3 times a day ~~ Lexapro 20mg ~ 1 a day ~~ Zegerid ~ 1 a day ~~ Birthcontrol ~ 1 a day
 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/3/2008 6:53 PM (GMT -6)   
Hang in there hydrofrog...I have pancolitis too and it can be contained most times...make sure you try some good rectal meds ie;rowasa enemas, cortifoam etc. Please also try not to stress over the UC, even though stress does not cause UC it really seems to feed on stress.


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

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