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piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/11/2008 1:48 AM (GMT -6)   
I'm new to the site, which I'm sure wasn't difficult to tell since it posts it under my name! haha!
In a sense though I feel as if I'm not, since I have visited the site nearly every day for about a year and a half reading various discussions to learn more about this HORRID disease we have all been blessed with. I have had one hell of a time with UC and describing it will probably be quite lengthy. Since I spend the vast majority of my nights unable to sleep I figured this may occupy my time a little better plus give me people to talk to who actually understand what I'm going through.
 

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/11/2008 7:47 AM (GMT -6)   
Hi and welcome to HW :) Yep, we can definately relate! Please do share your story with us. We are all ears - well eyes but you get my meaning? :O)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 12/11/2008 9:20 AM (GMT -6)   
     Welcome!  Are you taking prednisone?  That can give you insomnia.  While I was taking it, my doctor prescribed Ambien CR so I could sleep.  I only took 6.5 mgm and it helped.  Tell your doctor, he may prescribe something to help.  Good luck!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/11/2008 9:42 AM (GMT -6)   
I have been blessed with the ability to sleep anywhere anytime, lol. Prednisone can keep me up half the night peeing along with nightsweats if I take it too far into the evening.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 12/11/2008 10:11 AM (GMT -6)   
Welcome! Insomnia is such a curse; I'm sorry it's part of your life, too. Please feel free to share, vent, rant...you're in the right place!
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Had some success with acupuncture
Osteopenia and other assorted ailments


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/11/2008 10:32 AM (GMT -6)   
I'm a 21 year old female at wit's end with this disease! At the start of my sophomore year in college (2006) I started exhibiting symptoms, (i.e. blood in my stools) but due to fear convinced myself it was a hemorrhoid and went about my life. nono   I spent the following summer sick--eating once a week at most, dropping quite a bit of weight, and just being all around miserable. On August 30, 2007 I had plans to go to my younger brother's football scrimmage, but had spent the night before up with the worst stomach pains I had ever had. That morning I went to the bathroom and to my surprise saw a toilet full of blood. shocked   My first thought was cancer, since my grandmother had passed away from colon cancer, and I couldn't breathe. Once I calmed down, I called my parents and my step-mother made an appointment for me with an attending GI in her hospital. I waited two hellish weeks to see him, searching my symptoms on every internet search engine in an attempt to self-diagnose which, as I'm sure everyone knows, only makes matter worse. When I finally saw him, he scheduled a colonoscopy (YUCK) and much to my delight did not confirm my idea of cancer. Instead I had this disease, ulcerative colitis and GERD. I started on asacol, which didn't work and moved to prednisone by Oct. 2007. I HATED it, it made me crazy--totally out of my mind or out of sync with my own body--but it did the trick! I stayed on it for the next couple of months. In Dec. 2007, I experienced an intestinal blockage and spent the week before Christmas in the hospital. I left the hospital on quite a bit of pills (asacol, prednisone, lasix, bentyl, protonix, rowasa)By the second week in Jan. I was tapering prednisone and so happy about it. Everything went well for around 2 months. One Thursday evening in March 2008 I noticed I was abnormally thirsty, I ended up drinking 2 gallons of gatorade in a few hours and still wasn't satisfied. The next day I was dead tired, I couldn't even stand for longer than 2 minutes, I also noticed that if I ate anything I was in the bathroom within minutes. I went home to my mommy and spent the weekend, progressively getting worse, but convincing everyone I just had the flu. By Tuesday morning I could barely open my eyes or even take a breath and any movement or touch made me nearly scream in pain. I was rushed to the ER and don't remember much after that. I woke up to find out, my hemaglobin was at 4, I desperately needed a transfusion and my parents begged the doctor to not remove my colon. I spent the next two weeks on TPN because I couldn't eat and shock therapy of 600mg of prednisone, insulin, a coctail of pain meds, and the one drug I was dreading...6mp--it scared the hell out of me. I found out that I narrowly missed being in a coma from severe blood loss and was suffering hemmoragic colitis...fun fun fun. After two weeks of the hospital, I begged to go home and promised to come back at the first sign of any problems. Other than what seemed like the 30lbs I had put on in the hospital and the weekly bloodwork, I was okay. The following month I was back in the hospital for a few days with the flu. As I was tapering prednisone, my symptoms returned so the mg of my 6mp was increased and the symptoms abated. That brought with it a host of other problems. I couldn't eat, I couldn't even get out of bed because I was so sick, not to mention I was losing so much hair. In June 2008 my CBC revealed a drop in my WBC to about 3, so I had to discontinue the 6mp until it came back up which it did, but within days of continuing my WBC had dropped to 1 so I was told to stop it for good. shakehead   In July 2008, I spent a week in the hospital with pyelonephritis--complication of the impaired immune system and of course the stress brought the UC back on! I went back on the prednisone, which unfortunately did nothing except for give me a moon face and commenced on the journey to starting remicade. I went through the preliminary testing and preauthorization and started it in September 2008. In October 2008, on a Saturday night or 4:00am that morning I was blind-sided by this pain in my stomach. I was throwing up uncontrollably, couldn't even stand upright, and eventually passed out from the pain. My poor boyfriend rushed me to the ER, where I found out I was having another flare. I spent the next week in a dilaudid stupor and of course prednisone shock therapy! I didn't even leave the hospital in remission. My doctor informed me that on top of my colon being inflammed, loops of my small bowel were also inflamed. November rolls around and I'm getting my 3rd remicade infusion when I start to have vasopspams--a super rare side effect. This all leads me to the present, anticipating my fourth remicade infusion, still no remission which doesn't even seem to be in the near future, and so fed up with this disease. I'm ready to call in quits on the conservative route and get the j-pouch. cry
 
Sorry that was terrbily long-winded...

sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/11/2008 12:19 PM (GMT -6)   
God this illness is awful,i understand where your coming from and im ready to give up on medication,but the thought of being scared to wear a bikini on holiday ,being proud of your body and having an awful bag scares me!!! :(how long have u had it for.... x

piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/11/2008 12:45 PM (GMT -6)   
Honestly, I think my parents are more afraid of surgery than I am. I keep telling them that I am the one that faces living with this every day and not them. I would wear my bag proudly, I think it might add a little character plus it might be a conversation starter and I love to talk! haha
I'm just tired of compromising my life for this disease. I will go days without eating just so that I can do things that I enjoy and not worry about if there is a bathroom around or if I'll even be able to make it in time.
I've been diagnosed since September 2007, how about you?

emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 12/11/2008 10:05 PM (GMT -6)   
That wasn't terribly long-winded, that was just an awful lot to have to endure in one year. I hope 2009 is a whole different ballgame for you!
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Had some success with acupuncture
Osteopenia and other assorted ailments


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/11/2008 11:04 PM (GMT -6)   

Looking back, it sure was a lot...at the time it was just something I had to deal with. I tried so many different medicines that I didn't even list and nothing has seemed to work. I'm praying that 2009 is better for me and for anyone having to deal with this. I spoke with my doctor who seems to think that because of the inflammed loops of small bowel Crohn's might be a factor now too and doesn't even want to think about surgery cry

 

oy veyyy, its been one hell of a ride so far!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/12/2008 12:36 AM (GMT -6)   
piccolobellezza are you still taking pred? If so, are you taking it first thing in the am? If not and you're taking it mid afternoon or later this could be a mjor reason for your insomnia.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


downs
Regular Member


Date Joined Dec 2008
Total Posts : 76
   Posted 12/12/2008 5:49 AM (GMT -6)   
wow,,,,poor thing,,hi Emory ,,i am your age ,,,,,,,,,,,,im desperate for help....when will the prednisone work,,usually it does immediateley......ive been 4 days 40 mg,,,,im so sad

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/12/2008 7:16 AM (GMT -6)   
Aww you poor darling! I am so sorry you've had to endure all that. You seem to have that body that just wants to attack itself majorly. I will hope and pray that your 2009 year brings better health for you.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
To help Healingwell - click here: DONATE
 
 
 
 

 
 


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/12/2008 1:14 PM (GMT -6)   
Thank you so much for all of the well wishes, I'm dealing with it pretty well...I'd like to think! I only have a few bad days every so often, you know the "why meeeeeeeeeeee" days, but they are few and far between, I'm positive no matter what, that I will be okay!

pb4--I am actually completely off of prednisone now, this is about the first time since I started it last year and I noticed that my inability to sleep started when I stopped taking it...go figure!
21, female
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/12/2008 1:36 PM (GMT -6)   
That sucks picco...chamomile tea can aid with sleep if you drink it before bed...I have one first thing every morning because it actually aids with the gut, it's a natural anti-inflammatory and more...research has even shown that for mensturating women it aids with cramps...google it and check it out.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


downs
Regular Member


Date Joined Dec 2008
Total Posts : 76
   Posted 12/12/2008 1:39 PM (GMT -6)   
ya but how long does prednisone take???

theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 12/12/2008 2:36 PM (GMT -6)   
Wow, that is some heavy stuff, I commend your courage, its a hell of a disease. It is amazing you went through all that and lived to tell. I hope things get better for you whichever route you choose.
Jeff, 24, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Update 3/25/08: Entire Colon UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Probiotics by Ethical Nutrients- Intestinal Care (Started Recently During a Long Flare Seems To be Working Wonders) 2x day
Slow Fe (Iron supplement)- 1x day
Lexipro- 2x Day 10Mg


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 12/12/2008 10:53 PM (GMT -6)   
Hi downs, sorry I can't answer your question since I haven't been on prednisone. I hope it's starting to take effect for you by now. What is the extent of your UC? How long have you been diagnosed?
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Had some success with acupuncture
Osteopenia and other assorted ailments


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/12/2008 11:01 PM (GMT -6)   
lol sometimes I wonder how I haven't gone insane, but thank you again sooo much. Its really great to have support, even if its just through the computer and its nice to know I can turn somewhere and not have to explain what the disease is and yet have people who still don't understand. The insomnia is driving me crazy, I will pretty much try anything short of anymore prescription meds, I'm very reluctant to take anything more...I basically take what I HAVE to take in order to feel comfortable/try to gain remission. I don't take pain meds unless I'm in the hospital and just can't really bring myself to take sleeping pills.

Downs--as for the prednisone, I saw results in a little over a week at 60mg
21, female
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/12/2008 11:31 PM (GMT -6)   
Results from pred generally vary from person to person and even from flare to flare...the first time I took pred was the best, results by the next day, the only side effect was racing mind but I had no problems with that, then the many times after that first time, it took longer each time to kick in until finally it just stopped working all together for me. Pred is like a box of chocolates, you just never know what you're gonna get LOL!


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/13/2008 12:35 AM (GMT -6)   
haha isn't that the truth, my first time using pred was wonderful, treatment wise!

its around 1:30am here and I've managed to make 2lbs of peppermint bark and 30 chocolate covered pretzels....just for fun, since chocolate bothers me :(
21, female
 


theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 12/13/2008 4:24 AM (GMT -6)   
Maybe Rozerum its been gentle on me and is not really a narcotic like the other sleeping meds. Its worth a shot.
Jeff, 24, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Update 3/25/08: Entire Colon UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Probiotics by Ethical Nutrients- Intestinal Care (Started Recently During a Long Flare Seems To be Working Wonders) 2x day
Slow Fe (Iron supplement)- 1x day
Lexipro- 2x Day 10Mg


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/13/2008 10:05 AM (GMT -6)   
Wellllll, I'm on my way to Baltimore to watch the Steelers.
I probably won't do much eating so that I can sit through the car ride today and the whole game tomorrow...I still have an issue with public restrooms! haha
Wish me luck!
 
I hope everyone has a wonderful weekend :-)
21, female
 


Jen30
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 12/14/2008 8:59 PM (GMT -6)   

hi- i didn't read everything- but you have to eat- try the SCD diet- it helps- alot.  you may have to or can modify it until you find what works for you.  I have tried not eating also- & it made my symptoms worse.  I have also tried eating everything- and that made my symptoms worse.  You have to know your body & what you can eat.  Also try vitamins- fish oil- lactobacillus--c---

with the right combinations- you'll be ok maybe even remission- no stress, right foods, right vitamins, right meds.

UC 10yrs


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/15/2008 3:30 PM (GMT -6)   
oh i normally do eat, just not when I have plans to be out for a long time (i.e. tailgating from 11am until the end of the football game around 8pm)

I've pretty much figured out the things I can and can't eat, its getting rid of the stress that seems to be the problem, but I had a good weekend--the steelers won!

Thanks for the advice :)
21, female
Diagnosed September 2007
Remicade
Prednisone
Asacol
Protonix
Bentyl
Lomotil
Lasix
Zofran

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