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TOTAL COLECTOMY - PART 21

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Posted 2/2/2009 4:53 PM (GMT 0)
well the part 20 locked so i will start this one!

 

Hi girls hope you are all doing fine - it is snowing here in london with a good 12 inches - everything is at a standstill - typical of UK!  But just 1c so not as cold as for some of you in USA.

 

thanks Hodaya - no i am not feeling good these days - i cant WAIT until next week - pray it will go ahead! I dont know how large my rectocele is - not very big - it was moderately sized before STARR and i had a pelvic floor repair before that!

 

Janie you mentioned you had a gastric emptying test - i was never offered one - what did they do out of interest - i will mention it in hospital when i go in hopefully next week.

 

hope all you girls are doing fine and amanda how are u doing!!?? 

 

just a thought - i am on facebook if anyone wants to be my friend??? that would be so great to put faces to names!! my email address is on here if you click on my name ......or my full name is Karen Neary, London.....xxxx

Posted 2/2/2009 5:58 PM (GMT 0)

Hey Karen-

Thanks for starting the new thread. So sorry you are having a rough few weeks. The big day (hopefully) is just around the corner. I am feeling just as you are....just pretty crappy....or real crappy. I will be praying that they keep your appt and everything continues as planned.

Hodaya- Thanks for your info you relayed on the anismus. It makes much more sense to me. I believe my surgeon thought that just the TC would be enough, but as you said my anisumis is very severe. I just wish I would hear something soon. I am going insane just sitting and waiting....i cant sleep and I just sit and think think think. I wonder how I am that small percentage in everything....and I am always on the wrong side of the percentages!!!

Its my hubby's birthday today...the big 29!!! so we are heading to his parents for dinner tonight that I wont be able to eat:( but oh well....

I as well have a facebook Karen.....when I get home tonight I am going to try and find you. I believe mine is under my full name Lizzie Tinsman....Grand Rapids, MI It woulld be fun to put a face with all of you!!

Lizzie 

Posted 2/2/2009 8:48 PM (GMT 0)
hey girls,

i'm glad we're moving on to part 21!!! i can't believe part 20 is already over.. it happened so fast!!

Karen - i'm so sorry you're not feeling well.. you're probably alerted wether they'll mess with your date again. i'll pray everything goes well as scheduled, cause i just can't imagine them doing it to you again!!

Lizzie - about the anismus.. well, that's what 3 colorectal surgeons told me. i'm so sorry, i bet the info about the anismus was discouraging for you, and i'm truly so sorry for everything you're going through.
i feel so bad for you not being able to sleep, i'm worried about you staying up all night thinking.... that's not good for you! it's not easy, but i wish there was something i could do to ease your mind. you need some peace of mind, my dear!! maybe even to ask your dr. to give you something to help you sleep. how can you function at work and you have such a tough job??? please take care of youself, all of this excessive stress can eventually hurt you, Lizzie.

i also can't eat at parties, family occations or whatever social occations. i'll just feel too crampy and uncomfortable.
today i ate my breakfast, had my cup of black coffee at work, a few hard candies and that's it. and even so, i still feel swollen.

i hope you hear something soon, but please, meanwhile go to SLEEP, OK? it'll do you good, i promise.

i'm not sure i know how to use that facebook site, but i'll try.. you can put your picture in there? but i don't have a scanner and i'll probably need one for that, won't i?

Amanda - how are you dealing with your diet, hun? i hope you're o.k. i'm kinda worried.. the last thing you wrote about was a blockage, so i really hope you're o.k. please just throw us a sign (is that the right way to say it?) that you're o.k and things are flowing nicely for you.

how is everyone else doing?
Posted 2/2/2009 9:26 PM (GMT 0)

Hodaya-

I have been taking medicine to sleep. My surgeon started me on xanax for sleep while I was in the hospital and my PCP has extended it. Usually it works with no problem, but I have doubled my dose (dont worry its well within a safe dosage) and it does not work. I usually can fall asleep about 330 am and I get up at 645am. I am very tired.....two of my patients today have told me I look pale and tired.....pretty sad even they notice. It has taken a toll on me, but I do not know what else to do.

You can upload pics to facebook...its rather easy to use. My camera just plugs into my computer with a cord that came with it.....I would love to put faces to all of you wonderful people. Try it out....

Hope everyone else is ok.....Amanda? Whats going on sweetie?

Lizzie

Posted 2/2/2009 9:56 PM (GMT 0)

oh, Lizzie, don't laugh, i really mean this, if i could, i would come to just hold you and sing you a lullaby till you fall asleep. i have a lousy voice though, you'd probably get anoyed by it, lol.
how about reading!? reading has always been the best sleeping pill for me!!!! but i bet you've tried that already, haven't you? you poor thing, sleeping only 3 hrs a night. i would fall appart after 3 days..

well, it's midnight here and i'm so tired, but i'll check out that facebook tomorrow morning.

night... (actually, not for sure, i'll may check in againg after i brush my teeth smilewinkgrin )

Posted 2/3/2009 2:53 AM (GMT 0)
Hi Girls,

Been trying to catch up on all of you :-) .  Have been super busy at work with report cards and ordering supplies for next year; also have a student teacher in my room soooooo things are crazy right now.  But love working with 6 yr olds smilewinkgrin .

I have kindof a thought/suggestion that may be helpful to all of you.  I know that I told you I see a kinesiologist...this person works with me to use physical touch to different parts of the body to align the meridans in the body...look up kinesiology for more info...anyway, she also does emotional repatterning...stress release...reflexology...nutrition, all with a spiritual backing...but doesn't push it on you, leaves it open to you. She is certified and teaches at a college.  What I've learned is that I need to change myself as far as how I've dealt with things in the past...I'm a total internalizer and as you can see by my post it hasn't done me well in the past.  By internatizing everything, I've always put on the front that everything was fine...even when I was at my sickest...as a result...I'm minus quite a few organs and have had way too many surgeries...I've now decided to work with this person to change myself because I'm not going to be sick ANYMORE :-) ...so what I'm really trying to say is that maybe it might help to find someone, not necessarily a pyschologist but maybe someone that does alternative measures.

I know that I am on my way to a whole new healthy life and am continuing to see growth in myself daily.  I can tell you that yes, certain stresses definately affect how my bowels react now but with her help I will not give in as before.

Sorry this is so long but I want you all to get better both physically and emotionally so that your body will not continue to go through the stress.

Many blessings, peace and prayers,

Judy

Posted 2/3/2009 8:38 AM (GMT 0)
thank you Judy, i think it's worth a try, but my problem is that i'm just so bad when it comes to things like that when you have to be persistent and follow strict rules. i don't mind following a strict diet, and that's something that was really hard for me in the past, but after a lot of hard work, i managed to get used to it and now it doesn't bother me at all. i'm not a big fan of food, so it's easy for me to keep a strict diet.

my problem is when it comes to keeping doing certain exercises that the kinesiologist will probably give me. you probably have to do exercises every day, don't you? i'm soooooo bad with these things, i'm lazy. i will have to work on myself really hard to make myself get used to stuff like that to be able to be persistent and not quit in the middle of a treatment, or actually, i guess it's something i should do for the rest of my life, cause it's a way of living and not just a one-time thing. you have to continue with this all the time to have resuslts and it's veeeery hard for me to change my life style. it just seems so hard for me to change right now.

i wish that some time soon i'll be able to actually go for it totally, (like the way i managed to get used to organic foods etc.) and be dedicated and to espouse this way of living, cause i'm sure it can do wonders to my health.

thanks again for bringing it up.
Posted 2/3/2009 8:55 AM (GMT 0)
3hrs of sleep...wow. I have the opposite problem I sleep all day, I go to sleep around 1-2am and get up at 6pm its a bad habit though, no wonder why I do nothing
Posted 2/3/2009 4:29 PM (GMT 0)
Hi, I haven't had the chance to get on here because my computer has been in shut down mode and not wanting to connect to the internet. GRRRR...
2b ColonFree- First I have to say Kudos to you, what a fabulous screen name it makes me smile. Second, I just got the opportunity to read your post and I appreciate all your questions and suggestions. I called my best girlfriend who is a Dr. in Louisville just to ask her if I was crazy for not wanting to take the laxatives and she suggested I call the surgeon. Well, when I did which was Friday morning, he had my appt ready for yesterday afternoon because he said it sounded more serious than just constipation. When he did the examination he concluded that there wasn't any blockages but I did have Pelvic Floore Dysfunction. Considering that I also have Interstitial Cystitis and chronic Pelvic Pain I didn't realize that could be the problem. So starting in March I will start therapy to strengthen my pelvic muslces to help me go to the bathroom. I am a little nervous but excited to be able to go when I feel I need too. Has anyone else had to go through therapy to go potty? I told my sister and she said "Honey, you are the only person I know that would have to go to poop therapy." Its embarassing and funny at the same time. Granted humility flew out the window years ago....
Thanks again you guys!!
Posted 2/3/2009 8:21 PM (GMT 0)
AJ -
yeah, my butt has become a lot of ppl's business lately too. me don't feel embarrased either about nothing no more... (just kidding with the language)

how does your surgeon define your pelvic floor dysfunction - as anismus, prolapse or rectocele? was it shown in the tests before the colectomy? did you have to use suppositories before the surgery? did they explain to you about it before the surgery? did you pass the defecography and anal manomentry tests back then? - sorry for the questions attack...

you say that up untill now you were doing fine. how is it that the pelvic floor dysfunction is acting up only now, a year and a half post op? i mean, if i also have a PFD (pelvic floor dysfunction), does that mean i should be aware of the fact that after a certain period of time post op i'll be having issues again? (haven't had surgery yet). it sounds so discouraging to me... :o(

i've had therapy for my PFD, it is called biofeedback, but i'm a bad exerciser and i've read that if you're persistant and dedicated, you can have good results with that, and there are also devices you can buy and do it yourself at home, and if you dedicate like 15-20 minutes every day, you can have a very good result. i also heard - this one is for you too, Lizzie - that reflexology (sp?) can really help with those non relaxing muscles, i think it's worth a try.. what do you think Lizzie?

i wish you the best and i hope you can find solution, AJ. keep us posted on how you're doing.

i just wish i could know wether i'm expected to have the same issues 1-2 years post op?

Karen - i think the facebook is a great idea!! i love the idea of being able to see pictures of all of you wonderful ladies!!
i actually had to order a camera and i'll have it in about 2 weeks from now.. so i'll try to send my pictures then, and when you're back from the hosp. you'll be able to see me there (hopefully.. if manage to figure out how it is done).

how are you all doing?
Posted 2/3/2009 8:49 PM (GMT 0)
Well, answer to your questions....I had a defecography before surgery, they said and I quote "Your evacuation process is subperb." Just a side note, but I totally wish I could write that on a job resume.."Although I may not be fully qualified to fill this position, I think you should know my evacuation process has been documented as being subperb." Anyway, I did not have a rectocele or anything pre-surgery. When I talked to him yesterday he said that he went over with me that this could possibly happen, granted I don't remember anything before my surgery. I choose to block all that from memory, however my dad said that he went over that with him and my mother after my surgery because it was worse than what he had expected. I only would go to the bathroom 3 times a day post surgery and now I am down to one without feeling emptied. He said it wasn't uncommon but it is nothing at all to worry about. I have a slow transit small intestine and it is just continuing to become more and more lazy and diagnosed it as PFD. He thinks once I get into therapy things should start looking up. After I am done with my therapy he is going to set me up with a nutritionist and that will help me too I am sure. By the way, you are not bothering me a bit with questions, we are all learning from eachother's experiences....

So, not to crash ya'll's party, but I am addicted to facebook! I have been able to get in touch with so many old friends. You should definitely sign up.

I also know, that I am far from an expert on all of this tummy stuff but if you guys have any questions pre-surgery please feel free to ask...I will tell you as much as I can as far as my experiences.
Posted 2/3/2009 10:07 PM (GMT 0)
AJ,
please forgive me, but i'm from israel and english is not my language, it's hebrew. i didn't understand what subperb mean and i couldn't find it in morfix dictionary either. can you explain what that word means?
Posted 2/3/2009 10:22 PM (GMT 0)
Subperb (I may not have spelled it correctly) means excellent, high quality...
Will you be having your surgery in Israel?
Posted 2/4/2009 1:06 AM (GMT 0)

AJ-Hello.....So your situation os somewhat similar to mine. I had a TC one year ago and nearly six months later started having troubles. I too was sent to Physical therapy (biofeedback) for 3 continuous months with little to no improvement. I also tried botox injections into the rectum with no relief at all. I have been dx with sever anismun (a pelvic floor dysfunction) and am seeking a second opinion and facing a possible ileostomy.

I hope the threapy helps you!!!1 and you get the results I did not.

Having a horrible horrible day....inside and out. Want to crawl in a hole.

lizzie

Posted 2/4/2009 8:17 AM (GMT 0)
hey Lizzie... are you managing to sleep better, honey?
so, what do you think about reflexology to relax the puborectalis, maybe it's worth a try? i'm so sorry you feel so bad, sweety. you're such a wonderful, loving and caring woman and i think that you deserve a better life.

AJ.... so it seems like you had no probs with your rectum/evacuation before the surgery.. if it's not prolapse/rectocele/narrowing of the anastamosis site (nothing anatomical), then i guess what you have is anismus, which is a functional prob, but i wonder what could be the reason it can appear 1 1/2 yrs after surgery all of the sudden. that worries me, cause i feel i have to always be prepared that things can go wrong/worse in any time with no way to be able to expect it.

i do hope you find relief with biofeedback, and i've read about ppl who had success with it, but they were very dedicated and also did it at home every day + they combined other things like yoga and all kinds of alternatives.

about my surgery, well, i've been in procedures till now, went to my gi about 10 days ago with my tests results and after they were following my case for a whole year, he said that they're going to have a meeting of i think 5 drs on this neer friday and he's supposed to get back to me as to what's the next step is going to be. i'm not sure what is going to be decided.
i don't know what i want anymore, cause i hear about more and more women that are having probs post op and it's like one day i'm encouraged to go for it and have the surgery and then i hear about another woman (you) that things are not going good for her post op.
but, if my day comes, yes, it will be in Israel, Tel-Aviv city.

((((((hugs to all of you))))))
Posted 2/4/2009 4:38 PM (GMT 0)
Grrrr....Last night was not fun! I am sitting at my desk at work contemplating if anyone would notice if I were to crawl underneath and take a nap. I had to take a phenergan at 2:00 this morning and I swear they will take a horse down....lol. I woke up because my stomach felt so full and I was finally able to go, but it was so awful that I literally got sick. Oh me, what a lovely night.

Xtreme- Are you the one having trouble sleeping? Ask your Dr. for phenergan (its helps tremendously with nausea)...You will sleep for days! I take it when I know I can sleep for 12 consecutive hours. I also take ambien on an as needed basis just to help me rest. I am so sorry you are having trouble.

Hodaya- I know you read all these entries and get discouraged by some of the outcomes. Just keep in mind these are just set backs, and for me, this is nothing compared to how I felt before I had my surgery. I look and feel so much healthier now that I have had the surgery and would do it again tomorrow if I had to. Just keep your chin up and know that between you and your doctors the best decision will be made. Keep yourself planted firmly on the ground and be prepared for a fight. That was the best advice given to me. She told me this was going to be the fight of my life and it is one that can easily be won. So, take what you read here as possible outcomes. This site prepared me and am very grateful for all the advice given to me. Hang in there, you will be great!!!
Posted 2/4/2009 7:04 PM (GMT 0)
Hi ladies! I am happy to report that I am doing just fine. I no longer have a blockage, it took several days but it moved through on it's own. I'm so glad because that was not fun. I had another dr. appointment yesterday and it went great. Everything is going as good as can be expected. She said she still doesn't want me doing any lifting or heavy housework like vacuuming (darn!) and still no heavy exercising. I can do light housework and I can walk for exercise. The good news is I can get in the hot tub, but for no more than 10 minutes. She also gave me the go ahead for "bedroom aerobics" Woo Hoo!! That's really good news!! Unfortunately my husband is scared he's going to hurt me so he wants to wait another week. That figures...

Other than that my diet is going well. I am still craving raw vegetables but the doctor reinforced how bad that would be for me and insisted I stay away from them. She did say, however, that I can have cooked vegetables, but she limited those as well. The only fruit I can have is bananas. I have been wanting oranges so bad that I have been cutting them into slices and sucking the juice out of them. Is that weird? Ha! They are so good! The doctor also suggested I take Benefiber every day to give my stool some bulk or form which will prompt the urge to go. I don't have a problem with that but she said it will make sure I don't. She said it's the form of the stool that stimulates the urge. So, I'll try that it can't hurt anything.

On a lighter note, my youngest son Michael just had a birthday on Monday, the 2nd. He's now 11. My baby is 11! I can't believe it, it seems like yesterday he was a little baby and now he's in 5th grade talking about what girls he thinks are cute. Wow does time go fast!

Sorry for such a long email but thought I'd get you all caught up.
Posted 2/4/2009 7:51 PM (GMT 0)
Amanda... so great hearing from you, and even greater that it's such a positive post with good news. you sound good and happy, so i'm really happy for you too. congrats on your son's birthday... it's the same date as my sister's - 2nd Feb.

it's great to hear you're feeling good!! just follow doc's orders and take good care of yourself, sweety.
just a thought.. if you can have cooked vegies, maybe you can also have cooked fruits.....? i'm not kidding.. i mean like canned fruits, compote? can you have those. i cooked some peaches and prunes once and it was really great, i loved it. i just put them in a pot with water and boiled it for maybe less than 10 minutes. well maybe you'll just have to take the skin of. anyway, just a thought.

bedroom aerobics.. well, just a few more days left...... you go, girl!!!!
Posted 2/4/2009 7:58 PM (GMT 0)
AJ..... thanks for your encouragement. i'm amazed once again to know that in spite of the set backs and such, neither of you ladies regret the surgery. i guess it's quite convincing.
and, you sure are right, i have to be prepared for anything that can happen and be ready to deal with what ever comes in my way as a result of the surgery.

and yeah, this site was like an oasis to me. before i found it i was like in the dark, looking for ppl with the same prob as mine and couldn't find NO ONE till i found this wonderful site and learned so much about how life looks like post op, what do those who had it have to say about it etc. i think it's the most amazing site there is and very easy to use. i just feel like at home here. i have here the best support i could ever wish for, so yeah, i'm grateful i've found it too yeah .

Posted 2/4/2009 7:59 PM (GMT 0)

Amanda- Good to hear from you and glad you are doing so well!!!! You son and my husband have the same birthday!!! Koodos on all the "normalcy" you can start bringing back into your life. I hope this continues to go in the right direction and over the next months you will heal and begin to enjoy this new life and forget about the past and all your complications.

I tried to get into U of M earlier than March 30, but I had no luck and they do not have a cancellation list. Oh well....about 8 weeks I guess. Still have not heard anything back from my surgeon on his consults, but it has been only a week today. I am sure it takes longer than that.

Thanks for the suggestions for sleeping. I actually slept last night....i think my exhaustion caught up with me. I slep in till 10 am and it felt so good. I have nothing to do today except study for grad school entrance exam so I think i will take a pill and try and nap a little and enjoy my day of nothing.

Hodaya.....There is a huge part of me that would look into the reflexology, but it is so hard to be positive on simple corrections when nothing has worked so far. I know its a bad attitude, but all of the work I have put into therapy and exercises, etc has given me nothing but disappointment. I am super super constipated right now. I have been having right lower abd pain and righ back pain for 2 days. All i have been doing is laying on a heating pad and ibuprofen will not touch the pain. I was tempted to call the doctor, but i will wait.

Hope you all are well.

lizzie

Posted 2/5/2009 3:12 AM (GMT 0)

So I need your help.....

I have had abdominal pain the last couple days from being backed up. SO I took my MOM today and liquid and thats it came out of me, but I know there is stool. I have been eating little, but eating and not going at all.....So,

tonight I went to the bathroom and just liquid again, but it was blood mixed (noticeably) and when i wiped (sorry to be graphic) it was blood...bright red. So....again just now it happened again. What should I do?

Lizzie

Posted 2/5/2009 5:59 AM (GMT 0)
Lizzie,

bright red can mean it's from hemorhoids/fisure - nothing internal. do you have pain while passing the stools? do you have pain in general, not just when passing stools?
anyway, you should make an appt. to your surgeon to check it out.

i hope it's nothing serious and disappears with simple treatment!!

keep us posted.
Posted 2/5/2009 6:02 AM (GMT 0)
Lizzie.... SO glad you finally had a good night sleep and had a chance to get some rest. good for you!!
Posted 2/5/2009 11:13 AM (GMT 0)

Amanda i am so glad you are doing well  turn   been thinking of you and wondering if all was well.  Well at last you can start enjoying life again - at least you are enthusiastic - i dont have any desire for bedroom aerobics - but i never really did when i was your age either.

Lizzie i really feel for you - i also think it could be external or internal piles - have you got them?  even so - i would keep an eye on that - bright red is usually fresh blood.  i cant understand why you arent going how frustrating for you.  have you tried something else instead of milk of magnesia??? just a thought - maybe something more stimulating than that?

take care now.xxx

Posted 2/5/2009 3:08 PM (GMT 0)

Hello all....

Well I am not bleeding this am....I was examined last week rectally when I had my second defecography and there was no evidence of hemorhoids or fissures, but I dont know. The only pain I have is just these last few days and even this morning is a generalized knawing pain (not excruciating, just annoying) pain straight across my abdomen in the lower quandrants and back pain.

I have not called my surgeon for the mere fact that I cannot stand his nurse and we all know this. I know its not an excuse, but It really stresses me out. I have had this blood before and this was right before my botox. My surgeon did a rectal exam and hemacoult and things were fine, but he never explained where it may be coming from?

Anyways....did not sleep again last night. Too afraid my bowel is going to perforate.....i know its stupid, but this not knowing stuff is really messing with my head. Ok enough of my pity party. i need to stop.

Hope you all are well.....thanks for your constant support.

lizzie

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