A new GI, A new perspective

We are back in town from my follow-up colonoscopy that was 2-fold. Partly because it was 6 months since surgery (I know, hard to believe!) and the other part because of my 5 day hospital stint about a month ago.

We drove over Wednesday so I could prep...a little more complicated when you have to have a bag on you to do so. Scope was bright an early Thursday and then I had a follow-up appointment with the NEW GI on Friday afternoon.

The reason for the NEW GI is because Dr. Stone just recently (within the past week) moved to the west coast. His nurse practioner left a few months back too, so I had to make a tough decision on whether to keep going to St. Louis but with a different doctor, whom my original GI did not send me to, he sent me to stone, OR stick with Wash U/Barnes Jewish's IBD specialist.

Because of the severity and nature of my Crohn's (and now the colostomy), after some thought, I felt it was best to keep traveling as the doctors are great in our neck of the woods, but by going to Wash U/Barnes it is a teaching hospital and with that comes all the newest studies and findings. THAT is what I need most.

So, the scope? FANTASTIC! I hated prepping with a bag, but I just hate to prep regardless. This was colonoscopy #5, prep #6 (because of surgery) in the past 4 years. Anyhow, I have photos and if I ever get a chance, I'll post something to show you what a good colon looks like versus a bad colon. Seriously, ONE glance at these papers and I was like.. "WOW, that's MY colon?" I still can't believe it! On top of that, Wash U knows their stuff, procedure-wise, when it comes to scoping! I was there at 7 filling out paperwork, in the back getting ready by 7:30, scope started at around 5-10 after. They gave me lidocaine before the IV (which I honest to goodness did not need! But it's standard for them). I told them multiple times that I wake up during these so they dosed me VERY well with versad, prophyol (sp?), and fentanyl for pain. I was in pain before going in, so that helped. I woke up a few times during the procedure..but it was MAINLY whenever they rolled me to my side to check my rectum and my rectum IS inflammed (more on that in a bit) Anyhow, by 9:25 I was walking out of the procedure area. YES, walking! I felt fine. Little woosy, tired, and sore, but I felt strong enough to walk versus a wheelchair. WHAT a difference this scope was from the past. We then hit up Bob Evans before I chewed through my own flesh because I was STARVING! LOL

On Friday, we met with the doctor again. His name is Themos(and a bunch of letters) Dassopoulos. FANTASTIC doc. He felt a little bossy at first, but I think he's main concern is that there are too many cooks in the kitchen, or as he referred to them.. "red herrings where they don't belong." Essentailly, he does NOT think they found inflammation in that CT from the hospital stay a month ago. He actually just thinks I'm regularly spasming in my colon. My surgeon wanted me OFF anti-spasmatics, but it's becoming apparent that we NEED those.

Dr. D asked if I was in the medical field. I guess because I absorb what doctors are saying, research a bit on my own, and discuss it with professional when I get the chance. What can I say, you HAVE to be an advocate for your own health. He did educate me a little more on some things I didn't understand. One profound statement was "I need you off all pain medicine." At first, I thought maybe he was scolding me for having it. But, that was NOT the case. In fact, he said.. "This has NOTHING to do with addiction." What he said is that your colon is sort of like a bunch of balls squished together.. think like a caterpillar. In order for your bowels to move, where each of those "balls" meet, there is a ring of nerves. Those ring of nerves make your bowel contract and push it's way out of your intestines. Neat little thing we have, right? Well, the issue is this with pain medication. It puts your bowel to sleep, as we know, but what it does even more so that can cause damage is that it disrupts the systematic flow of those nerves. Yes, it slows them down, but everything you've trained them to do to that point becomes worthless the second that pain medicine enters your system. He told me tylenol was fine (which I primarily take anyhow - pain medication is used sparingly here). He said having had surgery and the the recent pain meds and such...we've GOT to get the spasms under control. He made me stop and think. At first he wanted to give me a anti-spasmadic that I'd take twice a day to keep it under control. Then, he decided to just take the Levsin (instant anti-spasmadic) as needed. THen, he asked how often I had them? They are VERY intermitent, but once we sat and discussed it, he is pretty firm that the "pain" I'm having is just the colon spasming because it has been through quite a bit lately.

The next thing he discussed was my rectum. Yeah, it doesn't look too pretty. It looks a TON better, but not pretty. If you recall back in May, Dr. Waller made a last minute decision in ER to keep that rectum there because there is a "chance" of reconnecting. I don't believe they could do it right now, but I do beleive in 5-10 years that "chance" could become "reality." Well, now here's the kicker. If that rectum is left in there and it continues to be inflammed, there is a high risk for cancer there (I know, nice, eh?) So, he's not upset it's still there, it's just that we don't have a game plan to get it removed OR to reconnect (do take-down surgery - take the colon down to the rectal stem). So, he wants me to follow-up with one of HIS surgeons and then let the surgeons has it out together and see what would be best. It's not urgent, but it is something that will continue to be discussed until it's taken care of.

So, in a nut-shell, great appointment. A little different as I wasn't expecting him to prescribe/discuss what he did. Oh, and he dropped one of my antibiotics..yeah!

So, here's my new drug list:
Asacol - 800mg 3x/day - He was going to switch me to Pentasa, but he doesn't like to change more than 1 drug at a time
Flagyl - antibiotic - 500mg 2/day
Levbid (sp?) - long-term antispasmatic - 2x/day
Levsin - Short-term spasmatic - I am on STRICT order that the first cramp I feel, I take a Levsin, if it continues past 2-3 minutes, I take another one. I can have 12 of these a day

I also have standing scripts for Xanax which can help sometime. But the above is pretty much it! I have a follow-up back with him in 6 months. And, he gave me his EMAIL! I looked at him baffled because I said.. "You're giving me your EMAIL?!?!" And, he looked at me and said.. "Yes, because I know you'll use it appropriately and want you to get that CT from the hospital emailed to me as well as I want to hear back from you in 3-4 weeks to know how the levbid is doing." I was stunned, needless to say! That saves us time AND money if he's willing to communicate via email in situations like this. Dr. Stone always wanted to see you. It's not that Dr. D doesn't want to see me, but I think because I'm in remission we are not treating Crohn's right now, instead we are just treating spasms which could be linked to the surgery, stress, IBS, etc.. so many factors.

Anyhow, that's the short and long of it! It's been so crazy around here... when I get a chance I'll upload some more florida pics, as well as some halloween photos.

The innocence of a child...

is a beautiful, beautiful thing...

Daytona Beach + Addy's 1st trip to the ocean = Amazing, no other words needed for this post....none.

Magical

If you would of asked me 5 years ago about Disney, I would of said.. "Oh, it's so fun! Love the rides." Ask me today... Nothing like seeing Mickey Mouse, Tinkerbell, Cinderella's Coach, and more simply come to life in front of your 2 year old's eyes. Magical is the only word that comes to mind!

Last year was fun because it was her 1st trip, but this year... she KNOWS Mickey Mouse....and she KNOWS Pooh Bear..and Tinkerbell, and more. It just keeps getting more and more magical. The whole idea of Disney came to life today. Miss Addison had a blast. SHe did have to warm up a bit (likely the whole sensory thing), but once she did...she kept telling daddy.. "Again!"

So, I share a few photos of our day. I'll try and upload more to FB soon.

2009 Fetal Hope 5K run/walk

Fetal distress and syndromes affect 800,000 pregnancies per year in the US alone. This is four times the amount of cases per year as breast cancer.

We lose more than 200 babies a day to fetal distresses and syndromes.

Kind of hard to believe that is true, isn't it? Most babies come into this world with a few minor complications, if any at all. But, 800,000 pregnancies per year? WOW!

We were 1 of those 800,000 in the year 2007. And, thanks to organizations like Fetal Hope and of course Dr. Ruben Quintero and his staff, they helped offer us one thing that no one else could....the ability to have HOPE.

Seems so small to some, but when every direction we went with Reagan failed, most days, all we had left was HOPE and PRAYER.

I never discussed much of the Fetal Hope organization. Maybe because I didn't form an immediate connection or find anyone with our EXACT diagnosis. But, truth is...I have still yet to find anyone with Reagan's EXACT diagnosis. But, there's a little history about Fetal Hope. I knew about it back then, but again, not sure I mentioned it. Dr. Quintero is a STAPLE in the Fetal Hope Foundation. He was able to save the founding couple's children. And, from there, he has done absolutely everything in his power to find out more about fetal syndromes, diagnosis, and ways to save these precious children. It's because of Dr. Q's efforts and the Fetal Hope Foundation that Reagan's surgery even happened. It's not something that has been going on for years... in fact, did you know Dr. Quintero DEVELOPED the Twin to Twin Transfusion Syndrome laser surgery? I kid you not! I remember distinctively him discussing with his med students DURING Reagan's surgery... "See this needle? I had the company put this special tip on it so that when it's in the uterus you can see it via ultrasound clearly." I about rolled off the table right there an then. In my eyes at the moment, he was an inventor!

Well, you are all wondering.. "Why am I reading this?" Well, because, an AMAZING opportunity became available in the Burge household. I received an email back in July that Dr. Quintero had moved his offices from Tampa to Jacksonville, FL and that they were having the FIRST EVER FETAL HOPE REUNION! WOW! Dr. Q has been in the fetal saving business for 10+ years now, so there will be people of all ages. But, this is amazing! And, in conjunction with the Fetal Reunion, there is the Inaugural Wolfson Children's Hospital Race for Fetal Hope. I "know" many people affected by syndromes since Reagan was diagnosed and the stories they tell are nothing short of amazing. Sure, some are able to get through it unscathed, except maybe emotionally, but then there are countless stories... stories like Reagan & Addy's...so unique and touching and bittersweet. Stories that DEFY every rational thought.

So, given the support of those close to us (and work), we've worked it out. Charley, myself, & Addison are heading to the RACE FOR FETAL HOPE in Jacksonville. It is a little under 2 weeks away, so things are a bit nutty in our household. And, because we want to be sure that we make this special for Addison as well, since she really didn't have the surgery herself (though she was completely subjected to it, obviously), we decided as a special treat... we will also drive down to Disney (less than 3 hours) and take her to Disney's Not So Scary Halloween Party.

Anyhow... what am I asking? (I'm terrible with asking for help!)

If you can spare $5, $10, $25, $50 or even $100, take a moment. Visit Reagan & Addison's Race for Fetal Hope TEAM PAGE and read about their story and donate to a VERY WONDERFUL CAUSE. Because, at the end of the day? All I wish is that in stories like Addison & Reagan's... one day...they will KNOW how to save BOTH of them.

Not a day goes by that we don't miss our Sweet Reagan, but not a day goes by either that we don't thank God that Addison entered this world safely...and we owe that in large part to Dr. Quintero, the Fetal Hope Foundation, our high-risk OB - Dr. Turnquest, and so many other doctors and nurses....and just as important... our friends and family who have prayed for our family time and time again.

Will you help make a difference?

In the hospital...

Most everyone is keeping up with me on FB, so that is part of the reason this blog has been neglected. Please, to stay up to date with me..the best way is to friend me on FaceBook.

Aside from that, everything has been going great up until Thursday this week. I have felt great, maybe a little tired, but great. Addy was just diagnosed with a disorder called Sensory Processing Disorder (or SPD/SID). It's nothing major, but it has been causing monumental behavior issues (yes, even with consistent discipline - so, please, don't go there). This is a real disorder and can be a real issue in time. Luckily, my mommy gut sensed something and evaluation is a free service of the state and given her prematurity (Yes, it can still affect her at times - though she's outgrown MOST of it). Anyhow, it was evident to them when they saw her. She didn't sit still for one second. She did all the puzzles they asked her to do, she sang for them (and they said her vocab is astounding for 2yrs), but wouldn't sit to do so. At one point they said.. "Is she like this all the time?" And, as I was discplining her during parts of the EI/Early Intervetion evaluation...she was running wild...and the answer was "Yes, from 6am to 8-9pm and we're lucky to get naps now." That was a shock for them.. So, the deal is.. she will get OT/Occupational Therapy..they will incorporate and also give us lots of good information on different types of "play" Addy is a sensory seeker and she seeks DEEP input through the day (bites self, hits head deliberately against the wall because she likes how it feels, etc). So, anyhow, it'll be fun for her..it's nothing drastic, but once they put her on a "Sensory Diet" - it's not a food diet..just a series of events she needs to do regularly - like jumping, this SHOULD fix the behavioal issue..tho...there will be SOME behavioral there, because let's face it.. she's TWO! She's in a bumper league now and goes to pre-preschool (9hrs/week). All of which she LOVES. The next thing we will do is put her into Gymnastics. That will help with her sensory needs.

I'll try and get some photos up before long.... but onto the TITLE of this post...

Yes, it's ME (Kaycie) in the hospital. And, yes, it's my damn Crohn's again. What gives? I'm so sick of battling this disease and NO ONE can even fathom to understand it except those closest to me who see me on a daily basis..and maybe that's why this one came as a shock to all of us.. because I was fine one day and NOT the next. We thought because it was so sudden it was appendicitis. I ended up in ER at around 4:45 on Friday. Was sent home from work on Thursday...they went ahead and ordered a belly series on the CT and did blood/urine test. ALL OF MY BLOOD WORK is NORMAL! (That's a HUGE yahoo!) After he said that I thought.. "Great, it's not my Crohn's!" No, that would incorrect. I have inflammation in my SMALL BOWEL now! You'll note that I mainly had trouble in my large intestines and rectum..they have never found it in my small bowel, but the inflammation is around my terminal ileum, small intestines, mesanine. So, because I can't take oral prednisone, they admitted me last night with IV steroids (which even that is a touchy subject), IV fluids, Morphine for pain, Zofran for nausea, Ativan for the stress of the situation. I'm in for tonight as well... as I need to be eating regularly and and passing stool without pain.. he also started me on Asacol today. The idea is to drop me with heavy doses of steroids for 3-5 days and wean me off quickly while starting Asacol to get it running in my system and then get off the steroids. But, the issue is.....it needs to be under control before they send me home on a weaning dose of steroids...because those will be oral pills...

So, here I sit..and with the whole media scare of H1N1, visiting is not much of an option here. You can have 2 people at a time, and they are strict on that. And, nobody under 24. So, yes, means I'm not getting to see my little girl at all.

Huge thanks to everyone who has helped thus far with Miss Addy.. Charley has to work the weekend and well..this was very unexpected....and bad timing for our family because there have been some other medical (one major/one semi-major) in our family that has caused a ruckus in our schedules....

For now.. of course...thoughts and prayers are always welcome!

We're here... just busy!

I have much to update, but just know we are still here and around...

In short, Charley is working 2 different jobs and I'm working 2, sometimes 3 (by accident). He's put in 160 hours in the past 2 weeks and I've lost count with having the bulk of the parenting on my side, but we've both been busting butt for the past few weeks! Bowling season has started, which means we're both back to league bowling (and if we could get Addy to have a bit more patient...she'd be bowling as well.. she can throw a 6lb ball down the lane all by herself! - She got a spare yesterday!) Addy started pre-school and she's loving it! It's more of a daycare/school setting, but they do structured play and arts and crafts. Just 9 hours a week, but I can already notice some new words and she says "Thank You" far more than she did before!

I have gazillions of photos to put on here plus other updates. Also, they took me off one of my Crohn's drugs - Flagyl - because I had some preliminary signs of neuropathy (numbness and tingling of hands - can be permanent).

Much much more to announce and tell, but no time to do so! Things are good.. we just wish we had a little bit more time for our family at the moment, as our days off no longer cross.

The last 12 days...

have felt like 12 years it seems.

First, Miss Addy will be TWO in 1 week! Can you believe it? That bittersweet day has rolled back around. I'm not sure how to feel. Again, I feel torn with emotion over the whole ordeal. It's a partially sad time, but in the same token it's one of the most blessed days. My girls came into my life that day, what a miraculous thing! But, then I stop and miss my sweet Reagan a bit more. A piece of me is forever gone, yet I feel so blessed to have known her for those short 87 minutes. Yet, then I look at Addy. Dear Addison...wow, what a miracle SHE is! My 29 weeker is an amazing little girl. She can recite her ABCs, loved to sing several songs ("Twinkle Twinkle little Star," "Rock-a-bye Baby," and "Pat-a-Cake.") She goes to bed singing and wakes up singing. She is the most active nearly 2 year old I know! Literally, she rises out of bed with more energy than the energizer bunny and doesn't stop until you basically make her stop. She loves Dora, Disney Princess, and babies and books. The little girl that needed oxygen to breathe when she was born and dropped to a weight of 2lbs 12oz...is now a nearly 24lb girl who helped our hearts heal a little.

She went from this:

To this...

I'll share more of our girls next week...after their birthday celebration! We're headed to the splash park. Please RSVP as soon as possible! :) We need to make sure we have enough food and cake for everyone. It'll be loads of fun, we promise! :)


As for the job front? I don't really want to get into it.. let's just say prayers for all this to work out are much appreciated and leave it at that for now. If something comes along, I'll be sure to share, for now, things and emotions are difficult.


As for me? Well, if you are on facebook, you are well aware of my "adventure" over the last week. It's obvious that the stress from the last 12 days has affected my disease. Yes, must I even type the word "flare?" But, it seems that is where things have gone. On Saturday (a week ago Saturday), after a normal day, I fell asleep in the recliner (pretty typical actually). At 1am, I was awoken by sharp painful cramps. At which point, I tried to work through them, thinking it's just gas or it'll pass, or what have you. Well, after about 30 or so minutes of the pain not going anywhere, I went to the bathroom. Sorry to give you TMI, but after an ostomy surgery, you still have a rectum that produces mucous. Sometimes, you have phantom pains that sitting on a toilet help ease the pain and the gas... don't ask me why, I just know it does! Anyway, that didn't work and I ended up turning around and puking my guts out. I had no idea I had puked so hard until the following day when my entire abdomen hurt. The pain was still there and extreme, at which point I had decided this might be a blockage and I became increasingly concerned, so Charley called 911, and I was taken by ambulance to the ER. As the medics were putting an IV in my hand to start some nausea meds my colostomy bag (which I had just changed moments before they got there as it had filled with normal stool) burst full of diarrhea. (Thank God I changed it!) That was yet another sign of a blockage. I got to the ER and they started all the basics. The doc came in..ordered me pain meds (at that point I wanted it) and nausea meds. By the time the pain meds came around, I declined it. I had suddenly started to feel better and felt like half an idiot because the pain was gone and maybe this was just a stomach flu. They ordered an xray to reassure all of us, at which point they saw nothing. So, they discharged me. I got home, got a good shower and changed my bag (you'll see why that's important).

They urged me to follow-up with my docs. Now, after surgery, I needed to go back to St. Louis and see Dr. Stone to re-establish things since I was in remission. I was putting it off until August, but the ER visit prompted that I do things sooner rather than later. So, we got in to see the nurse practioner on Wednesday at 2pm. Worked out great. We left around 10am on Wednesday morning. Got there just in time and saw Connie. We discussed what we should do. She sort of thought the weekend could of been a stomach bug too, but was disappointed they only did an xray and not a CT, as was I, but an xray was better than nothing. So, we discussed that right now, the best option would be to go back onto Cipro and Flagyl. These are 2 antibiotics. Now, I know I've said I can't take antibiotics, this is true, but Cipro and Flagyl are bacteria antibiotics that basically are aimed towards bacterial infections and not other type of infections. These two work best together and get rid of the "bad" bacteria in my gut. I'm not necessarily thrilled with them, but they are the lesser of the evils. I could still end up on Tsyabri after all of this...or even Methotrexate..both of which I'm trying to avoid. They decided we'd go this route and schedule a colonoscopy by Dr. Stone for 6 months post-partial colectomy, which is 4 months from now. We left with the new prescriptions and off we went. I did discuss that I hadn't had a bowel movement at all (bag was dry) since Sunday at 1am. I told her I knew I could take up to 2 doses of miralax a day, at which point she said you can actually take 12! Holy toledo batman!!! 12? I hate choking down 2 doses of that junk, but 12? So, anyway...we sort of discussed I'd do 3 doses, eat dinner, and drink more after that. The more I drank, the faster things would move. She also told me to try a few colace and I could use dulcolax laxatives too.

We left, hit the pharmacy, checked into the hotel, called our cousin to meet for dinner, and let Addy burn off a little energy.

I mixed my cocktail on the way to dinner. Took my cocktail to dinner. Drank it before dinner came and ate a few things while drinking it. I could feel/hear my gut moving. I thought, "Yes, this is working and fast!" Well, as dinner progressed and our meal came...I started to hurt, and I mean really hurt. I took 2 pain pills...pain pills constipate, but I was drinking laxative..it really shouldn't be an issue. Well, uhm, ya, it all went south from that point. Midway through the main course we had to throw our food into boxes and leave. Thank God our cousin was with us!

We called the emergency doc and after I repeated to I think 3 people my story and then they asked me.. "Are you sure it's Crohn's and not Ulcerative Colitis?" I think my mom and cousin had a nice chuckle to that one.. I instantly spat back "Yes, it's Crohn's - I have had fistulas, fissures, and abscesses." At which point, he said.. "Oh, ok, you have Crohn's Colitis." Me.."Yes." (They call it Crohn's colitis because it just means your Crohn's is in your colon..they've yet to find it in my small intestines.) He directs me to Barnes Jewish ER. Lovely, I'm NOT looking forward to this. Our cousin warns us, this is within the city and may not be good. Dr. Stone is at Wash U which is connected to Barnes Jewish, so we went.

Yes, bad idea... in fact, we called it a nightmare. They checked me in fast. Sent me to a nurse who asked me a slew of questions and took my info..at which point she asked my pain level.. I answered an honest 9 out of 10 (only because I truly have felt worse pain!) We asked how long this would take until I received pain medication and she could not answer that..she simply said "I'm only a nurse and we've ordered an xray, everything else will need to come from the doctor." LOVELY, the GI on the emergency line JUST TOLD ME I NEEDED A CT!!! NOT AN XRAY! I started balling in the triage room.. I mean down right sobbing to the point they had to pull me out of the chair and I was crying that I just wanted to go home. We found a spot in the overly crowded ER room. Not to mention, Addy fell asleep on the way and had a poopy diaper that they had to disinfect the bathroom to change her. (God Bless you Rene!!!) When she came out, I just started sobbing some more...and I just could NOT sit there for what was going to be HOURS. My mom asked our cousin.. "Is there anywhere else we can go?" Rene, our kind cousin, directed us to a hospital about 30 minutes away. It was a LONG ride. But, we arrived at Missouri Baptist..and WOW..what a difference. First of all, they were SLOW (God's perfect timing, eh?) I was the ONLY patient in the waiting room (this would be a first!) and they took me right back and at this hospital, the DOCTOR checks you in and immediately orders medications. They wheeled me back to a room within minutes and I had an IV not short after, and they were giving me pain meds and nausea meds I'd say within 15 minutes of my first foot into the door.

Well, they decided on a CT after I told them what doc. It was so funny because about 10 minutes after I got pain medicine, a new doctor came in and said.. "Well, I see back in February.." And, I looked at him puzzled... "I've never been here before, how do you know about February?" At which point, they informed me all the hospitals in the St. Louis area are linked together!! YEAH! This came in handy. So, they were dosing me with Dilaudid and Zofran pretty regularly. I was still rocking in pain...trying to choke down the nasty CT liquid and finding that the only way I got any relief was by sitting upright. Nice...

I can't remember if this was before the CT or after the CT, but at one point, they basically put me on a high dose of pain relievers and had to put me on a pulse ox to measure my breathing because they were afraid I might stop breathing based on the amount of pain meds I was on. For the record, I know way too much about pulse oxes from Addy's NICU days. That said, if you know what the pulse ox reading means.. most people are between 98-100. I, was dipping to the 93s. I think in adults they worry once you hit 88. NICU babies is 92. (Hence why 93 bothered me)

So, the CT came back.. no strictures, no blockages, no nothing! WHAT?!?!?!? I just looked at him stunned. At which point he told me.. "This could just be constipation." I was again stunned. I know constipation is NOT comfortable, but for God's sake.. can it really cause THAT much pain? Apparently it can.

I wasn't even aware of it for a few hours, we were just waiting on the CT results but they had already gotten me a bed.. they were admitting me and didn't tell me until about an hour later. They wanted to attempt to irrigate me in the ER first to see if that would help. Basically a soaps suds enema. Well, ya, that works just a tad different when you have a stoma protruding from your abdomen. I don't think the ER nurse (who at one point that I was lying about the pain and got a tad snippy about me asking for more pain meds) was too enthused, but oh well! He didn't do a very good job, but he also didn't have the right kit.. I think what he did basically just helped to loosen things up. I put a new bag back on at that point. (Good thing I brought several!)

At taht point, they wheeled me up to my floor. In the meantime (well before this), we had basically coordinated what to do with Addy. Well, not really.. just thanks to our cousin Rene who worked with her sister Chely (mom of twins as well - who's names are Abby & Reagan - no joke - never knew when we named our girls! - they are all close in age too) to drive and get Rene and they put the carseat into Chelys car and Rene went back to the hotel to stay with Addy (who did great with her!) At this point mom was with me, trying to console me as I was bawling again. I wasn't quite sure what we were going to do with Addy, I was worried about my mom, here I am in a strange hospital with NOTHING and they are admitting me? It was scary..very scary.

I was wheeled up to the floor at around 3am...at which point they gave me pain meds.. I was in and out most the night. On IV fluids only.. no ice chips, no water. There were orders to irrigate in the morning. It was a LONG night.. my roommate was up in pain all night too.. so if I wasn't moaning, she was.. and all I had was my cell phone and my ostomy bag (thank goodness for the facebook apps on Blackberry..as my tvs sound didn't work at all) Around 7am, the shift changed happened and I was inundated with nurses and doctors trying to find out why a girl from Newburgh had a GI in St. Louis at Barnes and ended up at Missouri Baptist. At which point I had to recollect my 3 1/2 years of Crohn's....plus my other ailments. I think I repeated it 3 or 4 times between the pain meds. Finally, at around 11am, they were ready to irrigate. Two nurses came in, and it was a hoot. I asked them if this was "Cocktail Hour in the bathroom." They were impressed with my sense of humour, but heck, what else am I supposed to do? So, they have this awesome irrigation kit from Convatec, which makes my ostomy supplies. Basically, I had to change the wafer and they hooked this bag that is about 5x the size of a regular ostomy bag up. They used this soaps suds stuff and put warm water into a large IV type bag. Held it up and let it flow into my intestines. It looked as though it was going to take some time to irrigate, so we decided to cap the end off and let me rest in bed until it was finished. I dozed in and out of sleep about about an hour later.. I had a clear gut. We still aren't exactly sure if it was constipation or what, but whatever it was, the irrigating WORKED... I instantly was pain free (now I was really sore, but that's a WHOLE other thing..) At around 4pm, they discharged me. At which point, my mom had already worked a plan to get Addy home. Thanks to my brother and sister-in-law for driving over to St. Louis to get her. Charley was supposed to start a new job (basically temporary) at 4pm, and there was now way he could get to St. Louis and back by the time we decided she needed to go home. It was the best thing for her because once she hit the car, she crashed. Poor girl had a rough few days...very interrupted sleep..I don't think she went to bed until nearly 1am the night I was in the ER. But, regardless, she got home ok and got some sleep..bless her heart!

We decided to stay an extra night in St. Louis...because my mom and I had only had about 1-3 hours sleep max. (So did Rene actually!) After I was discharged, we grabbed a bit to eat with Rene and went back to the hotel.. at which point.. I slept for 14 hours and mom slept I think 10 or 12. WOW! We were SOOOOO tired! I was still so sore, but I was hungry.

We got up on Friday and drove home. I have needed random pain pills here and there, nothing strong, just enough to knock the edge off of the discomfort. I'm on the Flagyl and Cipro and I have a slew of phone calls to make tomorrow.. I'm thinkign I need to learn to irrigate to prevent constipation (if this was that), I need to probably call the surgeon and see what they say, need to call Dr. Stone and find out what my SED/inflammation rate was because according to ER it was up..which indicates I'm flaring.. NOT good. There is a chance we've caught it early, but I'm terrified of a flare, to say the least!

Well, that is one LONG story and update, but that is the last 12 days in a nutshell...I need to head to bed...it's 1am and I have to get up at 7, and I'm flat exhausted, but can't sleep.. I'll pay for it tomorrow...well, today.

I'll keep you all posted....let's just hope it's nothing.. a girl can hope, right?