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Posted 9/8/2012 12:53 PM (GMT 0)
Hi Guys - I am in the middle of the worst flare I've possibly had. It's been extremely painful and I have lost a lot of sleep and have had far too many accidents to speak of.
I have a Dr.'s appointment next week and she has actually put me back in Prednisone until I can see her. I have not started the taper as she hasn't called it in yet, will probably do so on Monday.
However, I need relief now. Yesterday I had 4 accidents (pooped my pants) in one day. It was extremely embarrassing and made me waste a lot of time in my day. The first time was heading 15 minutes away to get my son to day care, I went right before I got him here so had to turn around and come all the way back home for a change of clothes. I got him there and went to the post office where I proceeded to have another accident that made me have to venture back home again. I then went back out to get my son and had another accident before I could get there so had to detour to my parents' house and shower and change clothes yet again. The 4th happened while in the shower last night and I just broke down. I am at my weakest point.
So my question to you guys is, have you ever tried a clear liquid diet just to give your bowels a rest? If so, did it help you or hinder you? I need rest and I feel like if I only have clear liquids today then my bowels will slow down and I can maybe rest a bit more as I have been getting up 3+ times a night to go to the bathroom. All at the same times! Once at 11PM, 1AM, 3AM and then 6AM.
I have been drinking broth and water and have jell-o in the fridge but was going to get some juice and popsicles. After 24 hours of this I wanted to start the BRATT diet to see if I can just gradually get back to normal. My colon is spasming so bad that I can't even retain my Canasa.
This flare was not horrible until last week when I ran out of meds and it was over a holiday weekend and I have them mail ordered to me and they didn't get here til Tuesday. I basically went 5 days without any kind of medication and it has brought me to this. Any idea when the meds will kick in again?
Very exhausted...mentally and physically.

***I have to add that I only drank broth and an Ensure for dinner last night and while I did get up in the night last night, this morning I have only gone 3 times and it has been over an hour since my last BM. I've had chicken broth and water for breakfast. Yum.***
Posted 9/8/2012 1:12 PM (GMT 0)
     I feel your pain!  Been there far too many times.  First of all, the Ensure may worsen your condition.  I tried clear liquids many times, but the only thing that helped me into any remission was the prednisone.  I couldn't retain the enemas either.  Are you bleeding?  I had portapots (three of them) stationed throughout my house and I live in a three bedroom rancher and still could not make it to the bathroom!  I'm also a lot older than you (66), so had no job or little kids to take care of.  I just cannot imagine the stress you must be under.  BTW...I had surgery in 2010.  I had become prednisone dependent, was on 6MP for seven years, Remicade and Humira both failed.  However, I suffered with UP for twelve years.  Some people have a lot of success on Imuran or 6MP and some people do well on the biologics...unfortunately, not me sad .
Posted 9/8/2012 1:20 PM (GMT 0)
I have very little blood, not even enough to make the water pink and it's fresh so makes me think it's my rectum.
The Ensure definitely did not make me feel well. I have decided to not drink them anymore.
I just have had enough and I really really need sleep so I figure if I do the clear liquids for a day and it slows my bathroom trips down a bit then I may be able to get a good nights sleep which is what I'm needing soooo bad right now. It's part of why I've been so emotionally spent. That and this disease just messes with your head!
Lower doses of prednisone seem to help me, when I'm up at the higher dosages my symptoms almost seem worse. So I'm hoping this small taper will put the fire out.
What surgery did you have, Christine?
Posted 9/8/2012 1:27 PM (GMT 0)
     Your symptoms sound a lot like what I suffered, proctitis.  My ulcerations were in the rectum and never traveled further into the colon.  At time of surgery, all I had in the colon was minor diverticulosis, but when the rectum goes, so must the rest of the colon sad .  My surgeon said my rectum was BADLY diseased and I sure can believe that!  I bled like a stuffed pig whenever in a flare.  The prednisone did help but the last two years I suffered with UP, I became prednisone dependent and you sure do NOT want that to happen.  I had a total colectomy with end ileostomy.  I was not a candidate for j-pouch.  I am soooo happy with my decision.  It didn't come easily for me, and surgery should be a last resort.  For me, it was a life saver.
Posted 9/8/2012 1:38 PM (GMT 0)
Definitely avoid Ensure. They are so full of sugars and preservatives that it can cause D. Are you on any fiber supplements? Do you have an anti-spasmodic such as Bentyl? Fiber supps can help bulk up your stool and Bentyl can help with the spasms.
Posted 9/8/2012 2:03 PM (GMT 0)
Red - I believe I have a prescription for an anti-spasmodic at the CVS. My Dr. called it in for me a little over a week ago but was hesitant to take it as I am most drugs. Have you taken it before? If so did it help?
No fiber supplements but I do take a probiotic. What kind of fiber supps should I take?
Posted 9/8/2012 3:10 PM (GMT 0)
I take Bentyl 20mgs as needed. It helps with the spasms/cramping tho it does tend to me make me feel a bit sleepy. I also have 10mg prescription that I take if the cramping is not so bad - that one doesn't make me as sleepy. It also helps with some of the urgency. I've been on Bentyl for about 6 years.

I am not to "up" on fiber supplements but my GI recommended Citrucel and I seem to do okay on it. I can't use to high of a dose though or it constipates me (which is from my diverticular disease not Uc).
Posted 9/8/2012 10:19 PM (GMT 0)
So sorry for how your feeling. I have the same thing at higher doses of pred but it takes the lenghth of time of the taper to get me to the feeling better time. I started GAPS diet when I was going 15x a day. Couldn't make it to bathrooom etc. It helped fairly quickly and 3weeks later way better ! I was pred and it wasn't working until the added GAPSs diet. Look online for gaps INTRO or ask me ir other we can help u. Its healing broths mainly and I ate steamed squash and ate gerberstep2banana baby food too. Once I could rest more I was able to eat chicken. Remember NOT to get dyhtrated. I drink unflavored pedialyte.
And if really bad a anti spasmpill desolves under tongue

Ps when I was having bad sideeffects from high mg of pred. My dr started me on DHEA and it made a world of difference.

I m hopig u see relief soon !!!!
Posted 9/8/2012 11:28 PM (GMT 0)
yes, i would sure give a liquid diet a try - try to stay away from sugary crap and crap in general - when i have some bad days, i do a veggie juice regimen - and add a little meat broth - again, my thing is quality over quantity - use real ingredients, not stuff out of a box or can - i use psyllium seed and husk powder for xtra fibre -
Posted 9/9/2012 12:27 PM (GMT 0)
Thank you guys!
Well the liquid diet was ok until I got a headache and just needed to put something on my tummy. I had broth with egg noodles last night, took a shower and went to bed. I actually slept for 6 hours straight without having to get up!
But of course 2:30 rolled around and I was running every hour again.
I have the Bentyl but I'm worried that I'll get drowsy while taking it and I have a little boy to take care of. If I'm having a small amount of blood is it still ok to take it?
I've done wonderfully on Prednisone before when I can finish the taper with my meds so hopefully this time around I'll have meds at the end of the taper and things will be ok.
Im just spent.....this isn't life. My son deserves his active mom and a healthy one at that!
Soystud- what kind of veggie juice do you make and how do you do the broths???
Posted 9/9/2012 3:04 PM (GMT 0)
Bentyl is a funny drug. If you are stationary, you get the sleepys but if you are active, it doesn't make you sleepy. It's odd really. Think of Bentyl as a support med - you can take it at any time - full on flare or mild flaring to occasional cramping. It doesn't matter what your symptoms are.
Posted 9/10/2012 8:41 PM (GMT 0)
Well I got SOME rest last night but never actually slept very well although I did only get up once in the night. That was a relief but I believe what kept me awake was the fact that I felt like if I rolled over I would have to get up (which is what was happening to me before).
My Dr. called in the Prednisone for me today. I am so weary of taking it again because I JUST got off of it in August. She wants me to start at 40mg and I'll see her on Thursday. At this point, even though I'm weary, I just want to feel normal again for a minute. Even if it means I have a little insomnia and rapid heart rate. Ugh....this disease.
Posted 9/10/2012 8:53 PM (GMT 0)
Ugh is right !! Goodluck !
Posted 9/10/2012 11:35 PM (GMT 0)
pred sucks but at least you have a life (even if it's as a zombie :-) )
Posted 9/11/2012 6:34 PM (GMT 0)
lol! soystud!!
Posted 9/11/2012 6:36 PM (GMT 0)
JSE, how r u ? any better?
Posted 9/11/2012 9:50 PM (GMT 0)
The day started off rough but but got the prednisone and I'm not sure if it's mental or not but I feel like it's already starting to work. I went from 11:30AM - 6PM without a BM which has been absolutely impossible these past couple of weeks. Is it possible for it to have already started working???
I already have a burst of energy, better mood, feel like eating, etc.
Hoping for a really good nights sleep tonight! :o)
After this week I am starting everything TOTALLY gluten free. Start exercise, and yoga (I believe a lot of my problem is stress/panic/anxiety; it's what sparks these things I believe) and just try to focus on healing and creating a whole healthy body. That way if one part of me (my colon) is sick, I have the energy to fight. Not sure if that makes much sense to anyone but for me, it does. Gotta fight the bad with the good sometimes...I know it won't cure me but it can't hurt!
Posted 9/11/2012 10:55 PM (GMT 0)
jse -

see my previous post regarding pred :-)

sounds to me like you have a great attitude - i totally agree with focusing on doing the right things for your whole body, not just the part that's yelling the loudest - makes perfect sense to me -

good luck -
Posted 9/11/2012 11:07 PM (GMT 0)
Jse , absolutly !! All those things are a great way to help out. I believe the same. exercise, positive and calm thinking are medicines , you just don't Have to take them in a pill but u do need it everyday.

Pred can work fast and all it takes is ONE day of not running to the bathroom constantly to allow the body some much needed relief and we're ready to restart !
Keep posting
Posted 9/12/2012 12:27 PM (GMT 0)
I'm guessing I spoke too soon as I was up a lot last night going to the bathroom.
I ate gluten yesterday as I haven't yet gone shopping to get started with my gluten free journey. It was a tuna sandwich, very plain. And then I had egg noodles which are not completely gluten but have gluten in them.
I am paying for it this AM. :o(
I will be very relieved to see my Dr. tomorrow. I have a lot of questions to ask her. My mom mentioned she thinks it's possible I may have a blockage. But I have looked up the symptoms and don't really have any of those symptoms except diarrhea/loose stool. When I go to the bathroom I have to run because if I don't I'm sure to have an accident but when I sit down only a little bit normally comes out and then I sit there "dry heaving" basically (from my butt! ew!) for a while and nothing every really comes out. When I ate rice a couple of days ago that came back to me the next day in a complete ambush, I had crampy diarrhea all day long. I have absolutely NO blood in my stools right now which is good but I'm just really concerned.
Will be so happy when I can feel better and start trying to reach the goals I have set for myself. I've been so incredibly sad, I cry at the drop of a dime and I just have no real interest in the things that make me happy.
My mom always tells me that you are what you think you are and what you think will happen, will be brought to you if you focus too much on it. I know she is right but how do you sway your mind when things always look so grim? I need to find strength.......lots of it. I promised myself last Friday that I would absolutely NOT let this disease bring me down anymore and I want to stick to that promise but I just don't know where to start.

I have some calcium/magnesium supplement and some vitamin C. Anyone have an experience taking them? They are all natural and gluten free but I just wanted to see if anyone ever had problems taking them. I need the calcium with the prednisone and the magnesium too....
Posted 9/12/2012 11:15 PM (GMT 0)
JSE,

I know its so hard ! to take your mind from the grim. i will tell myself "you wont be a victim to this darn uc" and the next thing i know i am in a paranoid state afaird to leave the house fearing an accident and i'm crying over anything and everything feeling helpless. Its demanding being sick as as important as it is to be positive , giving yourself a break and having a good cry , watch a funny movie , scream , buy yourself a cushiony toilet seat  :) have a funny magazine to read while you sit and butt-heave( btw i call it dryheaving of the butt too! ha!)

it sucks when you have an ok -ish day then BAM next day hope is lost agian, but you'll feel better smilewinkgrin

ps

since i started being less active i will do some exercise on the treadmill/elipitical at home even if i have to force myself it does help !

i take those vitamins no problems

 

Posted 9/13/2012 12:06 AM (GMT 0)
JSE, I am so sorry you are feeling as bad as you are.  I have been there and went through a similar flare this summer.  I think a clear liquid diet and actually a two day fast started me feeling a bit better.  There is no way I can do fiber during a flare.  It worsens my symptoms and causes extreme pain.  You definitely need to be drinking a lot of water.  I hope your appointment goes well and you start feeling better soon.

 

Posted 9/13/2012 10:06 AM (GMT 0)
Ps - I jinxed myself..... 3am ..... Been up and down,backn forth ...." Dry heaving " ERR,UGH,TIRED
Posted 9/14/2012 1:54 AM (GMT 0)
SS0000 - I had a pretty good night last night. Only one wake up call. Semi-tough AM but then things panned out. I actually had a very snake-like BM which is far from the yucky stuff I have been pooping. It was somewhat formed! :o) I actually stomached some nice chicken noodle soup for lunch and a light sandwich for dinner.
However, my Dr.'s appt is not what I wanted to hear. I expected to have to be scoped again to see whats going on or possibly restage my disease but I didn't expect to be told that there is a high probability that if the disease has progressed that I will have to try a 6MP. Bleh. I really wanted to avoid those drugs. I seriously hate meds and their side effects. She says if these drugs don't work then surgery is my last option. I don't want surgery.
I just need good vibes and prayers that the disease is no worse than it was before (3 years ago).
They took blood from me today and did a sediment test and everything came out normal. All of my other blood tests were normal except that I had very high glucose levels? Very strange....as I haven't eaten any sugar today.
Now, here's to hoping for a good nights sleep and I'm hoping my friends here get good nights sleep as well!
Posted 9/14/2012 2:38 AM (GMT 0)
Predisone it makes my blood sugar high.
Oh I'm glad for you JSE , ANY form Is such a blessing. I'm all liquid and urgency.... I want form dangit .well To a good nights sleep again !! Keep in touch

Ps You HAVE many options before surgery.
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