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Posted 4/9/2008 7:58 PM (GMT 0)
After taking an Ambien Monday night and actually sleeping through until Tuesday morning, I thought I was on the mend.  Not really.  The cramping started again about 8 pm yesterday and has not given me much rest since.  After feeling slight relief yesterday, today's pain is a crushing blow.  The Ambien didn't work as well last night either - or more likely, it was a whole combination of things.  I'm going to leave early today :( and run my few errands and head home to the couch, an early supper, and early bedtime.

I am supposed to check in with the doc on Monday.  I believe he'll be getting an update tomorrow instead.

It's amazing how a slight relief can lift our spirits and then the slight set back can completely dash them.

I did talk with my boss some today.  He's aware the situation is more than just a "not feeling good" phase.

My poor throbbing bum.  The BMs aren't as numerous, but they are extremely painful.

Is it okay to double up on the cortifoam dose?  It seems to be the only thing that soothes the throb.

Posted 4/9/2008 8:08 PM (GMT 0)
Ah man! You can't get a break! You take it easy and keep us posted.
Posted 4/9/2008 9:10 PM (GMT 0)
Remind me again why you're not on Colocort? Was it the retaining issue? If it is, now that you're a little bit better, maybe you can retain them better. Because of your history with Pan, the Cortifoam is really not reaching that high. It's only treating the rectum.

Yeah, I know the ups and downs too! It's frustrating and it makes you angry and depressed at the same time. I remember on my last big flare, I thought I was getting better only to have to run to the bathroom and cry in pain while on the toilet. I ended up crying all day because I was so bummed. Hang in there Dawn - I will keep my fingers crossed you find some relief soon.
Posted 4/9/2008 9:22 PM (GMT 0)
that sucks...I almost hate those "once in a blue moon" nights when you sleep thru the WHOLE night, cause then you start to think "Hey, I'm getting better!". Then the next day, or night, is just awful. Your GI still wants you on the 40mgs of pred? I've never used the foam... well anyway- hope things look better soon!

Posted 4/9/2008 10:26 PM (GMT 0)
No word back from the doc's office on my blood work. Tried to pick up more cortifoam at the pharmacy - what a mess! The script is for one can - for 28 applications. Yup - that's doesn't add up. So insurance won't fill for several more days. Thank goodness the pharmacist is nice - she's ordered the foam (they don't keep it stocked) and has faxed the GI to change the script. Hopefully I can get it tomorrow afternoon. Tonight will be Canasa. I hope that at least helps soothe the bum. So far the mesalamine has only irritated.

Why don't GI's offices have pharmacies that stock rectal meds? Maybe ONLY rectal meds? Unless you're frequently in the pharmacy for this stuff, no one seems to stock it!!! It doesn't help matters to have to wait an extra day or two.

Tomorrow - frank words with the GI's office. I want a surgical consultation. No more. I'm done. Pain for an hour following a bm isn't what I want to live with. I'll also ask for steroid enemas, what can it hurt at this point. (Yes, the foam was because of retention issues.) Even half a bottle should reach higher - and the pred itself working enough by itself.

A breakdown (sobbing, etc) in the Target parking lot this afternoon - after leaving work early because the pain was so intense - was enough.
Posted 4/9/2008 10:33 PM (GMT 0)
Well Dawn, it's about the quality of life that we are after and if your quality is going down hill then it's within your right to seek surgery. I know you've been reading about the surgeries and contemplating it but please do a little more homework before you make your final decision. It's a big step and one that you should go into with eyes wide open and no regrets.
Posted 4/9/2008 11:35 PM (GMT 0)
Sorry to read about your rough time. As a UC oldie I must tell you that PAIN requires disability leave from work. The Pred is not going to knock down your flare if you're rushing around trying to do your job, shopping, & other chores. Period. This I learned that hard way, believe me! You need to kick back, lie down & try to relax, even if you're not sleeping. That's the reality of a severe flare. It doesn't care about your career or other daily obligations. You have to take a few deep breaths & analyze your physical needs rationally. Then think about what further to tell your boss, discuss with gastro, etc. Your recuperation should be the 1st priority-- get help with chores when/however you can. (My take on it-- I lost 15 lbs. in 12 days in 1993 during a severe flare & wobbled when I walked, according to my gastro's scope assistant.) Take the best possible care of yourself! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 4/10/2008 12:25 AM (GMT 0)
The ONLY time I have any issue with getting a full night sleep is just around my period time...are you sure that isn't what's going on with you? I never used to have that issue but I have developed it over the last few yrs.

:)
Posted 4/10/2008 12:40 AM (GMT 0)
Nope - no menstral issues to interfere with sleep. When I developed my first bout of anemia, I switched to taking my BCP for three months. Keeps the PMSing and bleeding away. Probably not ideal for everyone - but it works well for me :)
Posted 4/10/2008 12:47 AM (GMT 0)
Have you considered Remicade? Or are you ready to go the surgery route? Whatever you decide you know we support you!!! I'm sending happy thoughts your way.
Posted 4/10/2008 1:15 AM (GMT 0)

I’ve been contemplating surgery since a flare that started in the Spring of 2006.  It’s not a decision that I’ve made snap judgment on.  My next step in investigating is talking to a surgeon.  It seems logical to make that step now.  Why wait until I’m sicker?  There is lots of homework to be done – and with my background, I wouldn’t be surprised if I end up writing a short report on the subject.  Shoddy research is a pet peeve.  I want to know my options and understand them.  Being able to use this forum as a sounding board to make sure all bases are covered is reassuring.

 

I’ve considered Remicade and will also talk to my doctor about that.  My concerns are that there can ALWAYS be another flare then.  Will I continue with the anxiety about when the next flare will start?  I really don’t want to be tethered to the Remi or other infusions every so many weeks for the next period of my life.  I’m honestly tired of paying for and taking meds.  It’s very selfish, which is my right, but I don’t want to do it anymore.  I’m tired of having the “pharmacy” in my purse.  I can handle toting around a couple of doses of Tylenol, but Immodium, Darvocet, Asacol, Imuran, Bentyl, etc. is getting to be a bit much.

 

Here are some more of my thoughts:

 

Why should I wait until I’m so week that I’m losing several pounds per week and can barely function?  Why should I endure intense pain that dulls my thinking and makes me irritable?  Why should I endure more misery when there is life to be lived?  Why should my body endure more prednisone (and other medication) side effects?

 

Relaxing is a hobby of mine.  A Saturday/Sunday afternoon nap is one of life’s great pleasures.  I don’t want to nap because I have to – because I can’t function without the sleep – I want to nap because I can!

 

Food has always been another passion.  There are few things better than a great tasting meal enjoyed with family and friends.  Or even a wonderfully prepared snack.  Why should I spend my time fearing how badly some tasty treat is going to hurt me?

 

I’ve been neglecting much of what I think I should be doing – the things that define part of who I am.  My job is suffering, which disappoints me, and I also hate to see my boss disappointed.  Several days in the last few (flaring) weeks, I have to leave early – just stating that I have to go, I can not stay longer.  This is also after coming in late because mornings are so miserably tough.  I have a major deadline next week and I can’t even think straight enough to follow basic steps from my training – I feel like a scatterbrained fool.  My marriage is suffering slightly as well.  My husband is going through a major maintenance outage at work and is on call 24/7.  He’s stressed because of that and because I’m sick.  I’m supposed to be supporting him though his tough times too.  Thankfully, hubby and I know this is temporary.  Once again however, why should our quality of life diminish because I have a defective colon?

 

I still must have talks with hubby and friends/family about options.  A major surgery isn’t something that I’ll consider without having their full support behind me.  I have learned one thing from being sick: Asking for help isn’t a weakness.

 

Now, I’m off to relax on the couch with the remote and the dogs for another half hour before bed.  I’m wishing for a full night of healing, restful sleep.

Posted 4/10/2008 3:35 AM (GMT 0)
Oh Dawn I wish there was something I could do.  I feel really bad that you are having such a hard time.  You were so supportive and helpful to me in a few personal e-mails we shared when I was at my wits end.  That helped me so much. 

Good luck with whatever you decide.  This is not easy.  I hate the ups and downs this awful UC does to all of you.

 

Posted 4/10/2008 9:51 AM (GMT 0)
Thank you so much for your support and encouragement. I know I'd be in an emotional and mental mess (more than I am) about this without my support group here. Your kind words mean SO very much.
Posted 4/10/2008 10:23 AM (GMT 0)
Hello Dawn,

I mostly sit back and watch the action and gather information for my own use but your story is touching me deeply. I'm in tears here at my keyboard. Your anguish is right there on my screen and I feel for you!

Your synopsis from last night hit a true chord with me. Sure I have UC and that could lead to a CHOICE to stop the madness. But in my case it's coupled with Rheumatoid Arthritis. Sleep issues, pain, knowing that it WON'T go away. Using injectable drugs with minimal relief. Running the circle for toooooo long. More than 20 years.

Dawn, in terms of your drive and analytical behavior you could be me! You want to perform at work. You want to be a loving wife. You want the freedom to live your life without this awful disease. You're ready to be YOUNG because you are YOUNG. YOU ARE YOUNG!

You are tied to pharmacy trips, doctor's appointments, sleeplessness, the pills and pain relievers in your purse and napping from necessity (not just because it's one of life's little pleasures) all the while memorizing where every bathroom in your area is located.

I wish for you all the good counsel, wisdom, support from friends and inner strength to come to your bridge and cross it. It sounds like you are ready to take the logical next step.

Dawn, I've certainly counted on your answers to questions on this board. I've USED your answers. Your ANSWERS have helped. You are special.

I'm praying for you by name today and every day until I hear that you are feeling better.

God Bless,

**Please edit your signature to 10 lines or less.**

Post Edited By Moderator (tjf) : 4/10/2008 6:47:04 AM (GMT-6)

Posted 4/10/2008 11:18 AM (GMT 0)
Dawn, you have put into words what many of us go thru here every single day. You know hon, if you still have my phone #, you can call me anytime you want - you know this right? Just because you moved doesn't mean we still can't chat ya know? All of us are still here (in MI) for you regardless of where you are living.
Posted 4/10/2008 12:49 PM (GMT 0)
How are you feeling this morning? Why not go in for a surgical consult and see what the surgeon has to say and see if you are a good candidate? At the same time you can talk to your GI about the possibilities of Remi or Humeria.
Posted 4/10/2008 12:56 PM (GMT 0)
Dawn, your reasoning sounds spot on to me. When your colon stops being a valued, if troublesome, body part and becomes an enemy, it's time to lose it. I know you don't want to go on Pred again, and I totally get that. It's the drug from hell.

The decision you make will be the right one for you, and if I were where you are I believe I'd be thinking the same way. You know we'll support you in your choice, whatever that may be.

I wish for you hope, no pain and a return to a normal life.
Posted 4/10/2008 1:11 PM (GMT 0)
This morning was ROUGH :( I know I woke up one time around 2:00 am to pee. Then at 4:40 again with gut cramps and I didn't make it :( Thankfullly a small accident and in my own bathroom - but devistating no less.

Since I was up, I made it to work early (my non-sick time) and will do what I can for the day. I need to hang around town until my cortifoam is in around noon. I'm about the call the nurse. I need four things - (1) bloodwork results, (2) refill on prednisone to make it through the weekend and beyond, (3) steroid enemas, (4) an appointment for sometime.

Will update you later.
Posted 4/10/2008 1:20 PM (GMT 0)
Hey Dawn,

I'm so sorry to hear that things are still spiraling down hill for you. It really sounds like you've got your head screwed on straight about this though, and I sincerely don't blame you for considering surgery at this point. You'v e suffered enough, and from the research I've done on jpouch.org and other sites, I've found that over 90% of people who have had the surgery are ultimately happier than they were when they had UC. Suebear is also a great person to talk to (I think she has her email posted under her profile). She helped me alot a few years ago when I was ready to throw in the towel and get surgery. Someone else said this, but you are still young and your body will recooperate alot faster now than after several more years of suffering. Like Sherry said, all of us MIchigan peeps are here for you if you need to talk! Feel free to call me any time :)
Posted 4/10/2008 2:43 PM (GMT 0)
I think it's important to remember that a surgical consult is just that, a consult ONLY.... You may go talk to a surgeon & decide that a surgical option is not for you after all. I know I was extremely reluctant to even call the surgeon's office, because it was like "giving in", & it meant that surgery was inevitable. But once I had met with the doctor & we had a good long talk about everything, I felt 100% better- regardless of the outcome. It's really just an information gathering session. It's being pro-active about your health, nothing more. Dawn, whatever you decide will be the right choice for you!

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