TOTAL COLECTOMY - PART 21

Hi Lizzie-
Glad to hear you are doing some better this morning. I have a bunch of problems with "the roids" as we like to call them in my house. They cause me a lot of discomfort...yuck! Granted I know that is not the source of your bleeding. Sorry I can't offer any advice.
I know it gets so frustrating, and I know you say you don't like your Dr.'s nurse, but you need to call anyway. I am not crazy about one of my Dr.'s nurses either because I think she thinks I am a hypochondriac. Thankfully my surgeon's nurse has had a similar surgery and has a j-pouch, so I don't feel as bad. But what you need to let them know is that while this all may be old hat to them, this is very knew and intimidating for you. One thing I have learned through this is to be assertive.
As for your pity party I understand. I had one yesterday. I went down to the hospital during my lunch break to get a bag of fluids run through because I feel very dehydrated right now. Usually I go with my dad and I get right back because he works very closely with the ER in his profession...so I go down there and I walk in and there are at least 3 people in there with vomit bags...Oh Great!! Well I talk to the triage nurse and I tell her whats going on and see if I can sit in the prayer room and wait just to remove myself from the germ infested waiting room and she wouldn't let me. Needless to say I wanted to stomp my feet and say "You're not playing by the rules!" Anyway, I left without my fluids and will go back tonight with my dad in tow. So I had a pity party all day yesterday. I feel absolutely drained today and am not wanting to be at work. I just can't bring myself to call in sick. I am dubbed as a workaholic and only miss if I am in the hospital.
I hope you start feeling better really soon. Oh...and I am going to nag one more time...Call your doctor!!!!  ;)

Hope everyone else is doing well....

Amanda~

Hey there....I wish i knew what was going on as well. I have not had the bleeding today, but just the pain...its such a wierd pain. I feel much like I did when I was home with drains....just a knawing pain. I too feel that not sleeping is dreadful. I just cannot stop my head from thoughts of "what is next". I weighed myself finally todya at work. In december I had gotten back up from to 124 (which was a good wt for me....I was working out still and had great muscle) and  and now I am 114.8 since Dec. So I have lost some weight....I look fine for my ht, but its just not healthy weight loss.

I know how you feel about the MOM....I remember the first time I had to take it for the same reasons as you...I was fine, but very afraid as well. There is some difference between the affect on the small versus the lg intestine with laxatives. I am not sure, but just like you I was afraid my body would become dependent. I hope you can get some relief....I know you never wanted to take it again becuase it brings back nightmares, but you have been through HE@# and your body needs the pain medication and no matter who you are narcotics cause constipation!!!

Hope you all are well......thanks for always supporting me for real. I honestly do not know what i would do without you guys!

Lizzie,

Please contact me, I'm going to see Dr. Chey, Sr. next week.  I want to talk to you about something. [email protected]

Judy

thanks Karen, unfortunately, i've already missed 9 days!! of work, 3 last days of the markers test that were unbearable and another 6 b/c of the flu.. oh well, it's not the first time this happens to me, it's just that it seems it's getting worse everyday and getting harder and harder for me to deal with it.

anyway, it's friday and i'm taking my lax' tonight , so hopefuly i'll be better soon.

Hodaya,

I am so sorry you are having to deal with this week after week. I remember so clearly what it was like before my surgery. I would get off work on Friday and have a liquid diet Friday night, Saturday, and would take a bunch of laxatives on Sunday morning right after church. It is so hard to have any form of social life dealing with these issues. I know you will be feeling better soon especially after your surgery.

Also, this sounds really really gross (and wierd) but I used to take Milk and Molasses enemas, I would cook it over a stove and they really worked great for a long time. That is what they would give me while I was in the hospital. I will try and find my paper about how to make them. I think it is like 1 or 2 cups milk to 8 oz. Molasses and bring it to 72 degrees on the stove. Do not take my word on this...I will look when I get home. Even though its been a year I cannot stand the smell of Molasses!

Janie- Have fun on your cruise, I am jealous!! My parents just got back from their last cruise not too long ago. They LOVED it. They seem to think that's the only way to vacation now!

I hope all of you start feeling better real soon!

Have a wonderful weekend!

Hodaya - will you email me? I would like to talk to you that way, just click on my name and it'll give you my email address. My test results were normal :-( just as I thought, I thought you'd like to know.

not really, i'm trying stuff, but no relief yet. i don't know what's happened all of the sudden. i'm so tired of this. you know, i've always took laxatives only on a weekly basis, and i think that i want to try start with MOM daily.

i understand your impatience and frustration.. hang in there, honey, i know it's hard all of this waiting, and it is a lot of time to wait, especialy when nothing gives you relief.

oh, Lizzie, when is this ever going to end?? will we ever be normal again  ?

oh, Karen, no way... i can't believe this!! this is just too upseting!! i'm so so sad for you, honey. how can they do that to someone so many times and in such short notice too???

i think you have to be prepared for next time, cause as i recall, Lizzie said something about a law of which they can't do it to you more than twice or something like that, don't remember exactly. you should call them a week ahead and show them how frustrated you are and how bad your condition is and that they CAN'T do this to you again in no way!!!!! cause your condition is getting worse and you can't go on like this. you have to be firm!

i'm so sorry you have to go through this mess. it's totally unjustified!!!!!!!

Hello Everyone, I have learned so much from reading everyone's posts. I've suffered from severe constipation my whole life. (I'm 48) I have colonic inertia, have been through all the tests I've been reading about and had a second opinion. The opinion of both doctors is I can continue to live as I am or have a total colectomy. I litteraly do not have a bm unless I use a 2 qt home tap water enema. I have all the typical ill feelings with constipation most of the time. I spend a lot of time with those enemas and feeling sick. I had finally made a decision to have the surgery and it is scheduled now for March 30th. Just today someone asked me if I had tried probiotics. I haven't so what I am asking is if anyone on here has tried them? Any long term luck? What did you try? Now that I've gone through all of the testing for both doctors and accepted I was going to do surgery, I'm wondering now if I should try the probiotic route. I am just so tired of it all and don't want to waste more time just to be more sick. Of course I have fears of the surgery too, but it should be successful. But there always are stories of the times it isn't successful. Ugh. Probiotics anyone?  Thanks for any info.

Linda

Hi all.....

Just checking in.....same old story. Nothing has changed and I still havent heard from my surgeon regarding coverage for U of M :( I still do not sleep....but there is nothing I can do to shut off my little head!

Hodaya- How are you doing with the daily MOM? Have you had any further relief? Praying for you!!!!

Karen- So sorry to hear about your surgery being cancelled!! Seriously they cannot keep doing this!!!! I hope you are doing well in the meantime.

Burnie- Probiotics are good for you, but they will not help someone with colonic inertia unfortunately :( I still take them daily, but they do not do anything for me. I even tried a whole colon cleansing system before my dx and surgery and it did nothing as well.

Amanda- How are you doing so far this week? Thinking and praying for you!

hey girls,

Lizzie - i don't know what else to do. lately it seems like every laxative i try is either does nothing for me, or it turns everything into water inside, but nothin comes out and i always feel deadly whirlpools in my abdomen. i'm so swolen, like i haven't been in a long time.... frustration..... managed to get some watery stool this morning, but it was very little and i feel like i have a storm of wild whirlpools in my abdomen that only gets wilder and wilder. even the gass can barely come out. i'm just miserable.

i'm so sorry you can't sleep. me, on the other hand, if given the chance, can sleep even 10 hours straight. i'm soooooo tired all the time. i just feel completely drained. i'm kinda depressed too and sleeping seems like a nice runaway for me right now.

hang in there, i know it's hard to wait, but try to relax... give yourself a break and go to sleep. i'm very sleepy lately, so i'm sending some sleepy "energies" your way, maybe it'll work, lol.

Linda - i understand your doubts. every now and then i also still have those thoughts of what if there's a very specific formulation of something that can do the magic for me and i just still haven't had the chance to find it yet.... yeah, well, everyone around me keep telling me to stop dreaming and wake up!! we're just having a very hard time accepting the fact we should have THIS surgery.. it's hard, i know, but i think we just don't have any choice..

i take probiotics daily. i don't know if they do anything for me, i just say what the heck... they can do no harm, lol.

look you still have plenty of time till your surgery to try the probiotics and see if it does anything for you, so just so you feel you didn't miss anything before the surgery - try them. but if you ask me, i'm really sorry to say this, but i think it won't even tickle your colon to move.

both drs diagnosed you with CI and you say you had probs your whole life... drs say if the constipation doesn't get better after 3 months, then there's defenitly some kind of a prob..... wow, so let alone a LIFE TIME constipation..... that's something that isn't gonna change. it's just too darn permanent.

i truly wish you the best of luck and success with your upcoming surgery, i think you're doing the right thing.

stay in touch with us, o.k?

how is everybody....? Janie - how was your cruise? i admire you for not letting this dreaded prob dictate your life. i think it's great!

Amanda - i'm always thinking of you. hope you're feeling good.

Karen - hope you're holding on. maybe eventually we'll have it together.. Janie's is on March 18, and who knows when will be mine, so it could be the 3 of us will have it together, oh, oh.. and Linda also on March 30... wow that's 4 of us togethe!!

Ashley - good luck with the biofeedback, hope you can make the most of it.

Judy - wanted to ask you long ago, but you were computerless.... you said to me before you too had probs with your rectum, and still the surgery works for you. well, was it anismus? were you diagnosed with that?

Dusti - didn't you get my email?

sorry it's so long.

Linda.... that woman with the probiotics suggestion sure sounds spooky to me! she knows nothing about CI.
i had lots of ppl telling me "you're not trying enough..." well, it's all bull..*** i tried tooooooo much for toooooo many years and NOTHING works!!
ppl just can't process the idea of a dead colon. i can't blame them, cause they're just thinking, so it's constipation, so what.., but it's much more than that. our colon is like a storeroom for garbage that can't evacuate it self.

i think you can sure be confident with your decision. according to your story, i have no doubt it's the right thing for you, and the sooner the better, cause let me tell you from my experience, the more you wait, the more damage can be caused - i can see how my condition is getting worse and also my BIL friend, who's a colorectal surgeon and he saw my medical file (he was in touch with my previous doc.) he told my sister to tell me to have the surgery asap, cause things can happen.

i'm glad you found this site. i was grateful too to have found it and finally to know that i'm not alone in this. it helps me a lot too.

i hope i'll be able to join you, Karen and Janie on March. if not on March for me, then i hope it'll be on May - on my birthday.. it'll be the best birthday present!

tomorrow 5 drs. are supposed to discuss my case. they're having the BIG LAST consultation concerning my case. i'm really excited about it. and then my gi is supposed to call me on sunday with the conclution. i'm reeeeeeeaaaaaallllly nerves.... wish me luck, and that they make the most right decision for me.

love you everybody.

it's 5 drs. not surgeons. it's my gi, the proffesor - who's the head of the gastroenrology ward in the hosp., the surgeon and a couple of 2 more, who i'm not sure what kind of drs. they are.