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TOTAL COLECTOMY - PART 21

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Posted 3/24/2009 9:32 PM (GMT 0)
hey Amanda.. just checked your website, this is so cool!!! i'm really excited for you, girl!!
Posted 3/24/2009 9:32 PM (GMT 0)
say.. would you teach me some time how to do business too?
Posted 3/24/2009 9:38 PM (GMT 0)
Thanks Hodaya!! Sure, what is it you want to know? You can email me at my new email address so we don't utilize the forum for this. It's [email protected]

Hope to hear from you there!
Posted 3/24/2009 9:41 PM (GMT 0)
wellll, was just kidding now, cause to tell you the truth, i'm feeling so sick lately and frustrated that i'm in no mood for business.
mmmm.. maybe later after surgery, if i'm smart enough for business, lol.
Posted 3/25/2009 12:10 AM (GMT 0)
Hi everyone.  I don't know if you remember me, but I had a total colectomy in 8/07 and now am having problems with constipation.  I had my total colectomy at Cleveland Clinic, and have set up an appointment with my surgeon for Friday.  He thinks that I may have a stricture.  My insurance company has not authorized my referral yet, and keeps having me call back to find out that nothing has been decided.  I am terrified of what may be wrong with me and even more afraid of if my insurance company doesn't authorize my appointment to Cleveland Clinic and if I have to see someone locally without adequate colorectal experience. 

 

I had a rectocele repair surgery four years ago and am also wondering if my constipation could be due to another rectocele.  I have all of the symptoms.  I'm wondering, has anyone had a total colectomy and then gotten a rectocele?  It seems like this would narrow my anastamosis, too, but I'm guessing.

 

butterfly

Posted 3/26/2009 7:45 AM (GMT 0)
hi butterfly,

sure i remember you.. well i read all total colectomy parts, so i read about your story too. though i'm not sure i remember corectly.. were you the one with botox injections? and if you don't mind me asking, but were you the one who had incontinance probs right after the surgery?

i hope the insurance approves your visit to your surgoen, but how can they not? i mean after all that's where you had surgery, so if they approved surgery, it seems only logic that they'll have to at least apptove your visit.

i hope they can find the prob and take care of it.

please keep us posted.
Posted 3/26/2009 2:24 PM (GMT 0)

Butterfly....

Oh girle. I feel everything you are going through. I had insurance inssues for my second opinion my colorectal surgeon had suggested. It took me over 11 weeks, 5,000 phone calls, a case manager, 4 consultations with other doctors in network with my insurance just to get approved for the consult. If I have to have any further work-up then I have to re-present to the medical director. My surgeon actually had to call the medical director of my insurance company and plee my case. I hope that they will give you the referral, but I know how stressful and frustrating waiting is and not knowing if your going to be approved. I actually had to make a self-pay appointment just tp get an appt with this dr and that was 13 weeks ago. I finally go Monday. Sorry Butterfly....keep us posted. How are you feeling?

Hodaya...Is your mom home? How r u?

Lizzie

Posted 3/26/2009 7:47 PM (GMT 0)
hi Lizzie,
actually my mom is not so great as we thought she would be. she's getting out soon, but she has to be connected to oxygen with a tube in her nose for the rest of her life. it's sad.

i'm feeling o.k. i've dereased my smoking intake in 50%!!!! i smoke 10 a day instead of 20 and that's MAJOR accomplishment for me. i can't cut it all at once, but i'm seriously working on it!!

would y'all say a little prayer for my mom to feel better and maybe not even needing the oxygen anymore and for me to manage to STOP SMOKINTG? i would greatly appreciate it.

anyway, i've called my gi and he said he's sorry that things are taking so long, but he'll try to rush it up. i don't know, what should take so long in seeing a psych dr? so i'm still waiting.. ogh.

Karen, how are you doing, how are you managing the stoma, food. hope you're better.

Janie.. i saw your little post. hope you get some rest.

hope everyone else are o.k
Posted 3/26/2009 8:28 PM (GMT 0)

Hodaya~

I will pray for your mom everyday and for your continued decrease in cigarettes. If she has to be home on oxygen, I know its hard, but at least she can be HOME and without tube sin the hospital. It is much improvement. I am sorry it is taking so long for the doctors to get you set up. How have you been doing with all the added stress? Praying for you and your family.

Just an FYI.....I had my labs rechecked and all is good. My potassium is back to normal with the pills. I had elevated calcium, but not sure why? I have been feeling the same with some severe bouts of pain (indigestion or kinked bowel) that last about 45 min and dizzy spells, but MONDAY IS COMING!!!!! I hope to get an answer soon.

lizzie

Posted 3/26/2009 8:51 PM (GMT 0)
oh Lizzie.. i hope so too that you get answers soon. i'll be praying for you too.

thanks so much for your support. well the added stress does effects us all. i've had such a blockage like i've never ever had in my whole entire constipated life. would you believe i drank half bottle of the laxative i usually take ("yovsolax" - from a nature health shop) and it was like i didn't take ANYTHING!!! well at first i took my regular amount, didn't work, the next day added half the dose to the regular, didn't work, then finally drank half bottle.. and it was like NOTHING!!!!! that was scary, cause i thought it's gonna stay like that from then on, but fortunately it didn't and now i'm back to "normal", that is taking my regular dose (the regular now is not what used to be 4 weeks ago though.. as you know it keeps coming up).

i'm so glad the meds got your potassium back to normal. i haven't had the chance to check mine yet. i may do it next week though.

i'm so sorry to hear about your pain.. but the dizzyness.. is that something new? why is that?? do you think it's bc of the vomiting?
let monday roll on!!! (is that the right way to say it?)
Posted 3/26/2009 10:45 PM (GMT 0)
Hodaya, yes, I was incontinent for quite awhile after surgery.  I'm taking milk of magnesia now and it is sometimes making me incontinent, too.  My referral was finally authorized yesterday before lunch and I was very relieved.  Now, I just have to get through tomorrow.  Before I take milk of magnesia, I feel like I have to push but nothing will come out.  After I take milk of magnesia, some may come out liquid, but I still am constipated and feel like I have to push. 

 

I am sorry to hear about your blockage.  It sounds like you are going through a very tough time yourself.  Has your doctor given you any solutions as to what might help you right now?  I know that constipation never has an easy answer, but I was just wondering.  Your post says that you had the starr procedure.  Was that for a rectocele?  

 

Lizzie, I can feel how frustrated with the entire medical system you must be.  I fought my insurance company for 2 weeks, because Cleveland Clinic is outside of our network, but it's where my surgeons are even though it's 8 hours away from my home.  None of the physicians in my area seem qualified or want to look at me.  Most of them don't even know what a colectomy is.  Today, I had to make 8 calls to my insurance company to get a copy of my referral faxed to the hospital for tomorrow's appointment.

 

My stomach dropped when I saw the hospital again tonite, but at least now I hope that I can be helped.  Lizzie, I am praying that your appointment on Monday goes well, too.  This entire constipation thing  is scary, because I never can tell what's up.  Just remember to hope for the best.  We've gotten to our appointments and that's half the battle!

 

butterfly                            

Posted 3/26/2009 11:16 PM (GMT 0)
butterfly,
i'm so glad they've approved your visit to cleveland clinic. now you can have some peace of mind, at least for that part. how interesting that it's either you have incontinance issues or constipation.. a dr told me once that this specific situation can happen, but it seems so odd, doesn't it?

thanks.. the blockage was the week before this one and it lasted for 5 days in which i could hardly eat anything, but it's over now and i feel much better. i know it was due to all the stress i was in concerning my mom's condition. it's AMAZING how stress can effect the gut, isn't it? at least this specific ordeal proved it to me very clearly..!!

right now all that drs have to offer me is.... laxatives, of course, and plenty of them!!

i had the starr due to major prolapse plus a small rectocele (2.5 cm). the prolapse was much more significant than the rectocele. did you also have the starr for your rectocele repair, or was it a different procedure? do you remember how large your rectocele was? just curious.

anyway, i wish you best of luck tomorrow with your dr's visit, you'll be in my prayers and i hope they can give you answers and find a solution for you.

keep us posted.
Posted 3/28/2009 7:01 PM (GMT 0)
hi all

my mom again stoped breathing and is on the respirator again with a tube down her throut. her condition is bad..
Posted 3/28/2009 7:40 PM (GMT 0)
Hodaya,
I am so sorry to hear this! I don't know the whole story about everything that is going on with your mom, but I will be thinking about her and I hope she gets better!
Posted 3/28/2009 7:52 PM (GMT 0)
thank you jj. my mom has a lung desease and been hospitalized with severe pneumonia 6 yrs ago, but this time it's a lot worse. she's been in the hosp for 2 weeks now, she started to get better few days ago, but today her condintions has deteriorated again..

thanks so much, your support means a lot.
Posted 3/28/2009 10:16 PM (GMT 0)

Hodaya~ I am so sorry your mom is having troubles again. I will pray for her recovery of her lungs and for your family to have strength during this time. Let me know if there is anything I can do. Please keep us updated on her condition. Much Love,

Lizzie

Posted 3/28/2009 10:46 PM (GMT 0)
I am so very sorry for you and your mom! You've had a rough couple of weeks! I hope her doctors are able to make her well again! Good luck to you both!
Posted 3/29/2009 1:30 AM (GMT 0)
Hodaya, yes, it seems like a terrible joke to be constipated and incontinent at the same time, but it happens. I got back from my drive home from Cleveland Clinic this afternoon. They did a flexible sigmoidoscopy and put me asleep for it. I don't have any strictures or a rectocele, and was told that I'm just constipated (even after the bowel prep enamas and milk of magnesia). This time I'm told to try miralax daily if necessary, and so the story goes, again.. I'm glad that I didn't have a blockage or anything, but am upset that I'm having constipation issues again.. I guess that it's a sluggish small intestine. I don't know the name of my previous rectocele surgery, was just told it was to repair it, but it was a size 3 rectocele.

I am relieved that your blockage has passed, but oh, the dreaded laxatives! I feel like laxatives is a dirty word that leaves a bad taste in my mouth and follows us everywhere.. Do you feel this way sometimes, too? Seriously though, I'm glad that you can eat now and maybe your GI symptoms can improve for you.. You're dealing with a lot of stress right now and need some relief.. I'll continue to pray for you and your mother, too.. She sounds very lucky to have you around!

Lizzie, I know that your appointment is coming up on Monday and I will be thinking about you all day. I hope that you find out something concrete that will help your situation. You seem so patient for all that you've been through and I congratulate you.. Keep hanging on.. I really do wish you good news!

Butterfly
Posted 3/29/2009 2:51 AM (GMT 0)
Hodaya,

I'm so sorry to hear about your mom. I can only imagine how difficult this is for you with all the other problems you're having. You and your mom will be in my prayers for sure.

Butterfly,
I can't believe you're constipated again. How discouraging that must be! I just had my TC 10 days ago, and I'm doing fine...even went out to the mall today! My family can't believe how well I'm feeling, but I'm still scared to death I'll still have problems. Right now I've been going very very small liquid amounts about 15 times a day, usually for an hour or two after each meal. I can control it though. In the hospital I had an entire 24 hours where I couldn't control anything...it just came out anytime. Once I started eating regular food though, I was able to control it.

I've eaten ham and chicken sandwiches, cereal, today I had Popeyes Chicken, rice, macaroni salad and roll. Even had birthday cake. I've had spaghetti, hamburger and french fries. Nothing seems to make a difference in what happens afterwards. I've been surprised by that, but also happy!

Anyway, so you're back to miralax? Did they tell you what would happen if that doesn't work? Is there a backup plan? I'm so sorry you have to deal with this again. It really isn't fair!
Posted 3/29/2009 7:48 AM (GMT 0)
thank you all so much for your support, the love and bonding on this board really warms my heart!!

i have to clarify something.. i have 2 moms, my biological mom was sick ever since my brothers and i were babies and my biological father was killed in a car accident, so anyway, my mom couldn't take care of us, so her sisters adopted us. my aunt, who i also call mom, took me when i was 2 months old. my real mom has been sick all of her life and has been really struggling every day with her illnesses.

well, just thought to make it clear that i still have my mom (aunt), the one that brought me up and the one i feel (unfotunately, but true) closer to.. so i won't be alone..

well, enough with the soap opera!

butterfly - i'm so sorry to hear that. i can't believe it too that you're still constipated even after the colon is removed. i can't imagine how frustating that can be, i'm so so sad for you :o(
you're right, laxatives.... i hate that word too. i've tried to avoid them for so many yrs till i realized that i had no choice, and i have to use them or else i'd have to go to the ER at least once a week.

i think you should have repeated defecography and manometry, or did you already have them recently? if you didn't, then i really think you should.

it's all so unfortunate, i'll pray for you too that you find a solution other than laxatives, cause it's really so unfair you have to go through this again!!

Lizzie - i hope and pray tomorrow's appt is an exteremly encouraging one, and.. maybe you'll be the first one to bring the happiest greatest news to all of us anismus victims :o)

Janie - i hope and pray that you continue to always feel good and that things will only get better and better for you!!

Karen - i'm worried about you, are you o.k, my friend?

Amanda - i'm so sorry to hear about the hemies, i hope you get that resolved too.

love you all!!
Posted 3/29/2009 10:51 PM (GMT 0)
I guess I spoke too soon yesterday....today I have been miserable. I can't poop again...or at least not much at all. I ate cereal this morning, same as always, and for lunch had about 1/3 piece of pizza and some soup.....very very little coming out; not at all like yesterday or the other days. I feel like it's just sitting in my butt! The feeling is the same as when I used to take laxtives and they didn't work well. I can't believe this. I tried a little hot choclocate, nothing. I think I'll try some more broth, any suggestions??
Posted 3/30/2009 9:15 AM (GMT 0)

Hey everyone

oh my gosh you are all having such a hard time.  Hodaya i do hope your mum pulls through. 

Lizzie hope today goes to plan and you get answers at last.  I remember you lasbutterfly and i am so dismayed to find you are having issues again with constipation.  do you remember me - we emailed a couple of times last year?

Hey Janie!  I was so excited about your recovery then saw your most recent post.  I am sure it is just a blip my dear.  You are only 10 days or so out of surgery so give your wounds time to heal.  Just stay on soft foods as much as poss and if there is pain then call your doctor.  I do hope today it will pass as it is early days. 

Well so far so good.  it has been nearly 3 weeks since surgery.  The bag still grosses me out a bit plus i got sore around the stoma almost straightaway as it shrunk basically in the 2 days after i got home, so i had to cut another template which i got rather too snug and didnt help, plus it all itches also!  i realy really hope i dont have to have it for life and can cope after the reversal.  it is also coming away from the skin which sometimes happens but i just have to keep putting this cream on it and powder around the sore bit - it is all a bit of a chore and takes ages.  so far no leaks so thats good.  it does 'balloon' though even when not even full up. 

As far as food goes i am eating most things except of course raw food and skins of vegetables, though i ate half a whole jacket potato the other night without thinking, but was ok.  i am not going to attempt raw food just yet as it is a bit too early so will just feel my way.  i didnt have an appetite for nearly two weeks so i have lost a bit of weight and my jeans feel much better on me.

My tummy doesnt get bloated anymore so thats good.  In fact it is looking flatter each day.  the scar is healing really well and looks a lot better than it was.  i have lost all previous symptoms it seems, though the muscles in my tummy feel sore still and the stoma of course.  it doesnt help i started to get a cough at the end of my stay in hospital which has in the last few days developed into a full blown cold and awful cough which doesnt help with the sore muscles!  so i feel sore today as spend all night coughing. 

One thing is worrying me is that i think i have rather slow output, as it isnt 1 1/2 hours from mouth to stoma as it should be.  i wonder if that will change, or if it matters. 

well i will check in later to see how you all are - you are all in my thoughts. xx

Posted 3/30/2009 9:49 AM (GMT 0)
thanks so much for your concern, Karen. we all just keep praying she'll be o.k.

gosh.. you sound so brave about all of this. i hope and pray for you that you DON'T need the stoma for life and that the reversal is successful. do you have to change it at night? if so, how do you know it's time to wake up and do it? do you stop eating early to avoid getting up at night?

when do you see your surgoen? maybe he can give you advice and help with the soreness and the shrinking? when you said shrunk, do you mean like narrowing..?

i hope the cough goes away soon, as i can imagine how it can hurt after such a big surgery. that's why i want to have the surgery in the summer, since i have sick lungs and i CAN'T afford getting a cold soon after the surgery.. i'm terrified about getting a non stop coughing.

stay strong, dear friend. it's only temporary.

i hope you get rid of that cough and feel better soon!!

take care, love you.
Posted 3/30/2009 1:48 PM (GMT 0)

Man oh Man....I am praying hard for all of u!!!!

Karen- So good to hear how well you are coping with this surgery! I thinkit is admirable. I hope to you do not have to keep it for life, but your symptoms seem much improved!! I hope you get some answers on your little issues and that life continues to get better!

Janie- So sad for you.....hope you can find a little trick to get things moving again! Kepp your chin up love!!!!

Hodaya- continually praying for you and your family!!!!

Butterfl-

Good to know there is no narrowing or strictures, but frustrating as ever!!! So the plan is to just add Miralax? Hows is that going for you? It made me feel awfully bloated! What is the plan????

Well off you U of M here in about 30 min....my appt is @ 1245p. Very nervous......

LIzzie

Posted 3/30/2009 2:57 PM (GMT 0)
Lizzie,

So today is finally here!  Good luck sweetie....be sure to report back as soon as you get home.  I pray you get some answers that don't require more surgery!

I haven't taken the bulking agent the Dr gave me today, and I'm moving again....several times but small amounts of liquids like the first few days.  I'm going to lay off the fiber stuff and see what happens.  I don't think my body is ready to be slowed down or my stool bulked up, it won't come out!--I don't want another day like yesterday!

Good luck!!!

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