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04-04-2010, 11:56 PM   #1
Jeff D.
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Need to talk(Ostomy advice)

Alright guys the past two weeks have been very tough on me. I've been going to the bathroom between 10 and 30 times a day. I never feel like I really ever get anything out fully. Today I had a few solid BM's but they were quite small and since then I've just had some mucus mixed with a little blood. It's getting so aggravating. I can take pain but right now the I have no pain just this annoyance that I constantly feel as if I need to run to the bathroom only to get there and have nothing come out except for the mucus on the toilet paper. I feel like I have something solid inside of me but it just doesn't want to come out.

I can't wait for my appointment on April 19th with my surgeon to talk about a colostomy. I used to be scared and such about the possibilty of an ostomy but honestly I don't care anymore. I just want to feel 100% again and I know I will once I heal from the surgery. I haven't had a Crohn's flare in years, every flare like symptom has been due to my scar tissue.

I just needed to get that off my chest before I went to sleep. Hopefully I can get to sleep as it's been pretty late and today I woke up at 12:30 which was pretty great.

Yesterday, I was having the chills and some hot flashes and stuff. I've woken up in a sweat two nights in a row. Yesterday I felt aweful most of the day. I think I got a bit dehydrated though.

I'm actually typing this from my toilet. I just had at least one if not two small pieces come out so hopefully that helps me get to sleep in a little bit.

Thanks guys for listening to more of my rants.

Jeff
04-05-2010, 12:01 AM   #2
misscris
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Hopefully you do get a good nights sleep Jeff. Sorry to hear you're still having so many problems but hopefully April 19th will be here before you know it!
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04-05-2010, 12:23 AM   #3
Entchen
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Ditto on the best wishes for a good sleep tonight. Hang in there.
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04-05-2010, 12:49 AM   #4
Jeff D.
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Thanks misscris and Kelly for the well wishes. It doesn't seem like it's going to be a good night. I've had a few solid BM's but now I'm getting, ugh I can't think of the word it's like contractions but it's in my rectum. How can a nursing student forget these words...ugh

Edit:

So now it's almost 2am and I've been to the bathroom I think 7 times since I the last time I wrote which was a little over an hour ago, maybe an hour and a half. I can't wait until I'm done my classes so I can take a few glasses of miralax to get rid of everything so maybe I can start fresh with an empty bowel on Tuesday.

Last edited by Jeff D.; 04-05-2010 at 01:54 AM.
04-05-2010, 02:26 AM   #5
Tan
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Good luck Jeff... Im sorry to hear you are going thru a really rough time at the moment... April 19th couldn't come quicker for you. You poor guy how horrible to be going to the toilet that much. I feel for you Jeff and wish and hope that you start to feel better soon.
04-05-2010, 03:29 AM   #6
Jeff D.
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Thanks Tan, I don't even konw how many times I've gone to the bathroom tonight. It's been way too many. I'm so tired yet my body won't give me a break and I need to be up at 7 to go to class. I can't skip tomorrow either because I have a quiz in my 8am class and a test that I have to take inbetween classes for my online class.

I'm really hoping my doctor says to not worry about classes and that I need to have the surgery done then. I'm sick of waiting...
04-05-2010, 05:20 AM   #7
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oh Jeff

you must be absolutely exhausted! it does sound like you're flaring just now, what with the urges/mucus and the sweats... i hope the next couple of weeks go quickly for you, and the appointment will bring some quick decisions and good results for you. i don't suppose you can bring the appointment forward at all?
04-05-2010, 06:05 AM   #8
Jeff D.
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Thank Ding. I haven't slept more than a few minutes and I need to be up in about an hour or so now. I know I'm not flaring even with the mucus and such it's just caused by the amount of backup I get. My rectum is about the size of a pencil to allow things to pass through and sometimes I get really backed up. After I get backed up I get a little blood and mucus and I get really dehydrated sometimes which causes the sweat and such. As soon as I get my colostomy I should be fine and I can't wait now...ugh.
04-05-2010, 06:13 AM   #9
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i also can't wait for you to have the surgery now... i know it's been a rocky road thinking about the prospect of it, but when you finally get to the stage where surgery is the light on the horizon that you so badly need. a lot of the previous worries fade into insignificance...

Jeff we'll be there with you, and just shout out if you need any questions answering about stoma care etc...
04-05-2010, 06:30 AM   #10
Crohn's 35
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Jeff, you have been through alot in this last year. As we all know we need sleep, it is so crucial to healing. I know you were a bit nervous of your surgery, but enough is enough. I know from alot that I have learned on here, it is great if you can control your pain and doesnt interfere with your lifestyle but when it takes over, time to get surgery. Your life will change dramatically and you will be a happier person, others around you will feel more comfortable too.

I know the best is yet to come, hang in there, just a little longer. Hope you get some sleep soon. Big hugs!!!!
04-05-2010, 07:07 AM   #11
Jeff D.
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Thanks Sue and Pen. I really just can't wait to get this done. I wish there was a way that I could get it done today instead of waiting. I don't want to be like this for the next two months. Well, I've got to get ready in a few to head off to school and take a quiz and a test and then be able to study for a really hard test tomorrow.
04-05-2010, 07:09 AM   #12
Crohn's 35
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Good luck with your test Jeff!!! Make us proud!
04-05-2010, 07:36 AM   #13
Jer's Girl
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Good luck Jeff! I hope you get the surgery soon. Try not to be too hard on yourself if work and school end up just not being possible right now. Your health is the most important thing.
04-05-2010, 08:46 AM   #14
Jerman
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Hiya Bud,

I am truly sorry that you are going through this, hopefully the appointment will come soon, and you will get some relief. Hang in there bud, remember to breath and try to relax so that your stress doesnt make it worse. I hope your day is pain and D free!
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04-05-2010, 09:42 AM   #15
Lydia
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You mean spasms? Ow. I hope you find relief soon. Take your temp. You may have a fever. Go to the ER if you do, you could have an infection.

Take care. I am actually a little excited to see how much better you feel after surgery. I wish you the best.
04-05-2010, 11:07 AM   #16
Astra
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Aw Jeff poor you!

I feel for you, especially the sleep deprivation, you must be exhausted
Wishing you good luck and everything gets sorted soon, hopefully you wont have to put up with this for much longer, is there no way you can rush appt thro?
lotsa luv
Joan xxx
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04-05-2010, 12:21 PM   #17
Nyx
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Hope you start feeling better soon Jeff...and as others have said, try and get your appointment rushed forward. Or, go to the ER kicking and screaming...that might work too! Good luck....keep us posted!
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04-05-2010, 01:07 PM   #18
Jeff D.
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Thanks guys. I'm a little tempted to go to the ER except that the drive is about an hour and a half to the guys I trust at Vandy. I don't trust the doctors where I live. I've really considering taking miralax treatment to make sure I'm nice and empty and then go to the ER or something.

Yes, spasm is the word I was looking for. Whenever I go from having D to solid BM's and having to push I get spasms in my anal sphincter which keeps making thing I need to go to the bathroom even when I don't.

It's crazy that April 19 is the rush for me. My surgeon only sees patients on Mondays and the rest of the time he is doing surgery.

I've at least made it through today and I got a 76 on my sociology exam, pretty good considering I slept 10 to 20 minutes last night and was attempting to study yesterday as that's when I found out about the test.

Thanks everyone for all of the support. You guys are the best. I'm just getting excited to get this surgery and feel better...
04-05-2010, 02:40 PM   #19
CDDad
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Wow Jeff, your symptoms are terrible. I read your post a few times, it made me think of my symptoms too. Except I have diarrhea. I'm not sure which is worse! I have had the night sweats too sometimes and know how horrible they are.

I'm scheduled for a Protocolectomy on April 15th, so I know the feeling of wanting that diseased organ out. Mine is mostly forced by dysplasia, without that, I'm not sure I could pull the trigger and remove the colon just for the other symptoms.

But, I do know the feeling of hitting rock bottom medically, and just wanting to get better somehow. I hope things work out for you!
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Last edited by CDDad; 04-05-2010 at 02:44 PM.
04-05-2010, 03:14 PM   #20
whysoserious
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I hope you feel better soon Jeff! Now that you have taken your test I hope you are able to relax more. I hope April 19th is here before you know it.
04-05-2010, 03:33 PM   #21
Jennjenn
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I feel bad that you are going through this. If you are thinking the emergency room can help you feel a bit better till your appointment, then maybe you should consider going. I hope that everything works out well for you and that you can feel well again soon.
04-05-2010, 08:24 PM   #22
Keona
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...and here I thought I was the only one who did homework/studying in the washroom!! I hope you feel better and congratulations on your test! You're obviously very bright if that is the grade you can get when you're not sleeping and feeling the way you do. I hope you feel better soon and it is good to know that you're a nursing student... I have met several horrible nurses with no empathy (did my practicum in the E.R).. sounds like you will be a good nurse!

Feel better
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Last edited by Keona; 02-19-2011 at 03:58 AM.
04-05-2010, 08:51 PM   #23
Nancy Lee
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Jeff, I'm so sorry to see you going through this...
Is there anyway you can get the surgery moved up?

I hate to see you suffering like this...
maybe if you go to the ER.

I'll be praying for you.

Healing hugs~Nancy
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04-06-2010, 12:02 AM   #24
Jeff D.
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Thanks guys for all of the support. Going to the ER right not won't do much good as I'm not really a priority. I'm not having any pain or anything so it won't help too much and I would only be taking the bed in the ER of someone who really needs it. When I go see my surgeon on the 19th I'm going to see if he could do the surgery ASAP.

Keona: Yeah studying on the toilet is so normal for me. I also feel I would make a good nurse since I know what it's like to be on the other side. What are you studying?

Thanks guys for everything, now back to sleep for me.
04-06-2010, 12:40 AM   #25
kello82
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aw jeff im so sorry. i was hoping that youd have a little longer before the ostomy became imminent, i hate that it is all because of the stricture. and the rest of your colon is in decent shape?? i just hate that ,you dont deserve that.

ahh well im glad to hear that you are finding some comfort in the prospect of the ostomy now. i remember being there very well.
all the sudden its so simple and clear and you wonder why the hell you were so scared before. thats how i felt anways, very strange to go from being petrified to anticipation. in those final weeks i could not WAIT to get this thing done, i was just so over everything, just like you.
haha i even typed on here from the toilet too lol!

ah well, as always i am here if you need anything i will do my best to help you in any way. pm me or fb me any time k?

i hope either way it goes, you get some freakin relief soon. i know youre strong enough to get thru w/e it takes.

am def thinking of you, xox
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04-06-2010, 02:22 AM   #26
Keona
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Hey Jeff,
Hopefully you are sleeping right now and find some relief. I have a minor in sociology and I am majoring in social work. April 8th is my last class (WHOO-HOO), and then I have one more elective and I'm done. I have 6 papers and a presentation left to do but the prof's were really good in giving me extensions. I hope to work in I.C.U when I finish (did my 4th year practicum there). How much longer do you have? What area do you want to get into?
I can really relate to you going from the bathroom directly to class. At my last presentation (I did the powerpoint for the group) I had to run to the washroom at school and they had to wait for me. They were laughing (the class) and wondering what took me so long. In fact, so late that the next group presenting had to take our slot. I also find I go out of my way to make people laugh - don't want to seem like a downer all the time at school with not feeling well. Difficult to do! I try to hide everything as much as possible but do at times mention I don't feel so great. (That way if anyone says "why didn't you say something?" I can say I sort of did.) Anyhow, kudos to you for going through the motions and getting to school the way you're feeling. The student experience is difficult to begin with without the added extra pressures!
Here is a medical joke for you - maybe make you smile... what is the difference between an oral and rectal thermometer?
.........
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Last edited by Keona; 02-19-2011 at 03:59 AM.
04-06-2010, 02:46 AM   #27
Keona
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okay, I hope I dont get in trouble for posting this but before I do imagine doing rounds in the ICU with the intensivists and fellows and nurses and dietician, etc.. youre the new person and while they are going over the individual charts, the intensivist asks you the difference between the two - real serious like. I think I said something about where they go (I was so nervous) and he told me. "the taste"... and walked away. sort of felt like i was on the show "punked"..
anyhow.... good luck at school!
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Last edited by Keona; 02-19-2011 at 03:59 AM.
04-06-2010, 11:16 AM   #28
Jeff D.
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Thanks guys for all the support.

Kelly:Yeah I feel mentally how you did before you ahd the surgery. I'm just ready for it to be over haha.

Keona: I could never be a sociologist. I'm taking a sociology course and maybe it's because it's online but it's kicking my butt.haha I'm similar to you in that I try and hide how I feel but I think my teacher yesterday caught on as I was cringing alot and she looked at me funny.

Here's a joke for you: "I think this is an oral thermometer, we'll use it anyway"

I think now I'm completely out of stool so I didn't have hardly a problem in class today but it was only a test that took 30 minutes. I'm pretty proud because I got a 73 on a test I was hardly able to study for. If I was able to study I wonder what I would have made.
04-06-2010, 06:50 PM   #29
Keona
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Does your school have something called "student development?" It would be where the counsellors are. My university has one and for anyone who has a 'disability' they will make arrangements with your prof for you. For example, if you have been scheduled to write 2 exams in a 24 hour period they will make sure that it is spaced out a little better or if you want to write an exam in a small room instead of a gymnasium of 700 people they will acommodate you. They do this to level the playing field a little - so-to-speak. I was thinking about your comment my first post... if you get in the 70's when you are sick, imagine what grades you would be getting if you weren't. I didn't want to say anything in case that made you feel worse. I don't know if your school has this but might be worth making a few inquiries.
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Last edited by Keona; 02-19-2011 at 04:00 AM.
04-06-2010, 07:12 PM   #30
Jeff D.
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Oh no, you didn't make me feel worse. I'm not sure if they have student development as it's a community college. Yeah, that would be awesome if I could figure something out to help me out. I really can't wait to see what happens when I get my stoma and what I will be able to do when I don't constantly feel like I have to go to the bathroom. There are so many plus's for me with this as I will be able to ride bikes again since I don't have to worry about anymore scar tissue and I will be able to sing more powerfully since I won't have to worry about going to the bathroom while singing.haha

I think my biggest problem with school is that I'm lazy but I know most of that is due to my scarring and feeling like I have to go. Anyways, I'm just going on and on now, I'm starting to get sleepy now so I'm a bit delirious.haha It's kind of weird because I feel drugged up and I'm not.haha
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