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Bmshurt
Regular Member


Date Joined Oct 2007
Total Posts : 28
   Posted 10/30/2007 4:18 PM (GMT -7)   
Hello to everyone.
 
I was diagnosed with UC back in May 07 and just had my 2nd flare up and to sum it up, what truly painfull sickening experience. The 2nd flare up was by far the worse than the 1st. I was in so much pain at times that i buckled over in ball whimpering like a crippled animal. Spent 4 days in the hospital with steriod and morphine injections with the nightly enimas. Flare up lasted about a month with multiple bloody/mucus BM, unable to eat anything, lost 33lbs (not the good way to lose it). Seems like the only thing i could eat for awhile was Yogurt and Plums. I finally got my appetite back and seem to be getting back to normal. Stools are still not forming but no more bloody yuck. Most of the stomach pain is gone except for late at night i will wake up with a violent BM and extreme cramping (happens several times a nite, getting less frequent which is good i guess). Im drinking nothing but water, tea, and apple juice. I was on Asacol before this last flare up now im on Prednisone and soon to be starting something called Imuran (pending a blood test procedure). Ive noticed that im getting extreme headaches now which i wasnt before, not sure if was from not eating, or from the Prednisone. Tylenol seems to help but im worried as these headaches dont seem normal. Guess i will bring that up on next GI visit. Im trying to stay on a good healthy diet but since i got my appettite back im getting all these crazy cravings like Frischs Big Boy, Cheesecake, cookies, Chili, Spaghetti, etc. I normally only splurge on bad food occasionally but latetly thats all im craving. Well im done for now but i really do understand now what im up against and its not pretty. Doctor said my colon canal looked like someone went up ther with a rotor rooter (guess i have it bad). Good luck to all with this terrible disease.
 
Medications: Prednisone, Probiotic, Oscal, Multivitamins, Soon to start Imuran 

DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 10/30/2007 7:53 PM (GMT -7)   
Wish I had more hope for you. There are a ton of things you can try, but everyone is different. I've noticed from my experience that nothing works twice, nothing seems to work for long, everyone reacts differently, and every time I get a flare it gets worse. This last one was bad for me like the one you just got over, but I was 9 days in the hospital and the steroids did little (I lied and told them I was ok to get out). I also was recently on the SCD diet with great success and no drugs for a year and a half. However, when I flared again, after eating so healthy for so long...I got way better when I started eating crap again. I'm lost. Really really lost.
Wish you the best. I do know lots of people who don't ever need drugs and are fine and eat whatever. May we all be so lucky someday!
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 


redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 10/30/2007 8:40 PM (GMT -7)   
Hi Bmshurt,

Sorry to hear that you are having a very difficult time. I can understand your frustration with your health. It's true that different things work for different people. Seems like there are some people who do well on Imuran. Hopefully, you will be one of them. Keep your head up and feel free to vent your emotions anytime.

Regards,

Red Plum

Pan colitis for 20 years now

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 10/31/2007 1:05 AM (GMT -7)   
Welcome to the forum!!

Wow, never heard the term that a gut looks like a roto rooter was up there..but it's perfect for description..lol!

Where exactly is your UC..throughout or limited?

I hope the meds get you feeling better soon. Please, however, try to eat more normally. The suggestion of the SCD might be something for you to consider...it at least will get you to eat and be a bit easier on your digestive system.

Take care,
quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


Knitty_Cat
Regular Member


Date Joined Jun 2006
Total Posts : 105
   Posted 10/31/2007 3:20 AM (GMT -7)   
The crazy food cravings will be the prednisone! Try not to give in to those cravings :-) I used to try to work out on paper what was reasonable to eat for a day and stick to that. You can't trust what your mind says food-wise while you are on the pred as your mind will always say EAT. Having said that, it sounds like you lost a lot of weight and nutrition so you probably do need to eat some decent foods in good amounts.

Best of luck with it.
UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 2 tablets 4 times daily (4gm total) for maintenance, Salofalk enemas and/or Colifoam for flares
Oat bran 60grams daily, Metamuscil and multivitamins


Currently using Colifoam (steroid foam) nightly to clear up a stubborn flare.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/31/2007 5:56 PM (GMT -7)   
The headaches are likely from the Pred also, but have your doctor check your eyes for signs of pressure in the brain. Sometimes Pred can cause that. And the eating? Yeah, when I was on Pred, I added salt to everything and was ravenously hungry all the time. I tried not to add salt, but then the food tasted like I was eating paper.

The up side is that the symptoms go away when the Prednisone does. Hang in there, I believe there's a combination that will work for each of us. It just sometimes takes a long time to find it.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."

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