TOTAL COLECTOMY PART 20

Linda,

I have just joined this website in the last few weeks.  You and I are alot alike.  I have only been dealing with colonic inertia for the last few years but have had colon problems (colitis, etc.) since I was 16.  I take Ducalox every weekend and am home bound for one of those days.  I am also dealing with extreme fatigue, bloating and rectal bleeding.  I have also been given the option of the total colectomy but at this point I am just dealing with it.  My surgeon keeps telling me I will know when I am ready.  I have days too where I do not feel like doing anything.  I also have some fear of the surgery only working for a period of time and then I will need an ilieostomy.  I know that the surgery is not perfect but at times I feel it has to be better than this. 

This website will provide you with so much information and it has helped me to understand more about my condition. 

I wish you the best of luck as you make your decision and will keep you in my prayers.

Take care.

Sue

Lizzie and Hodaya,

I am just now catching up on the two of you.  Best of luck and I will be keeping both of you in my thoughts and prayers and will be checking back to see how everything is going.

Take care.

Sue

ooooohhhhhh, you guys, i'm having the most terrible flu. i have high fever, can't stop coughing, my whole body, skin and mucles hurt and my nose, as oppose to my butt, is running without controle.... i'm truly miserable :'o( anyway, just needed to vent...

hi Linda and welcome :o)

i'm so sorry to hear you've been suffering with this condition for so many years. i didn't quite understand.... did your surgoen say he's positive you should have the surgery and you just having a hard time accepting it, or is your surgoen not sure yet?

anyway, i totally understand your fears and it's only normal to have them. i'm also considering surgery and have been struggling with all of those feelings for quite a while now, but honestly, the more i think about it the more i realize my condition isn't gonna get better, quite the opposite, actually, CI only gets worse with time and when we're too old, we won't be able to do all the acrobatics we are able to do now, and i can tell you, that will be torture!! i have a 70 yrs old aunt who did enemas and laxatives for more than 40 years and now NOTHING works for her anymore (stopped working for her 10 yrs ago, actually) and she's totally miserable, and drs. won't touch her, now at her age, and she's really sick, having a heart condition, lungs desease and a lot of other probs.

i think that you should have the surgery, cause you should also think about the risk of perforation of the colon, and it can happen, especially if you do tap enemas - i think they are more likely to cause that (i'm not sure though). and the way you feel with the fatigue and headaches all the time - all of that is not quality of life.

i know it's scary, i'm scared too!!!! and i think we won't stop being scared till the last moment before we go in..... and IT IS normal!
we should separate our emotions and our common sense when it comes to decisions like these.

i truly wish you the best of luck with your decisions.
please stay around and keep us posted.

Welcome Linda

i totally get where you are coming from - it took me 6 months to make a decision to get a t/c. I certainly would not waste anymore time doing what you are doing - i speak to myself that way too - i am 47 and i certainly dont want to waste anymore of my life - 10 years of problems is ENOUGH for me. I get your concerns about the markers staying in the last part of the colon - but if every other GI test is normal then i dont see how you can go on as you are especially if no one is giving you any other options!

at the end of the day are you miserable? Do you have a life? Do you have QUALITY of life? questions i have asked myself. If the answers are NO I DONT! then you know the way forward in your heart. i am scared but i am just gonna take whatever comes my way be it good or bad as nothing will change for me continuing as i am.

hope that is helpful. xx

Hi my lovely friends.....

To all fo you approaching the decision of surgery or having fears about the surgery I wish I could give yout the courage to JUST DO IT!!!!! I promise you that no matter if you have complications or not you are going to get the life back you all deserve. I know the unknown sucks and the what ifs? are always flotaing around, but I have had personally a lot of thos what if's and I have told you before and I will tell you again that I have never regretted the surgery once!!! NEVER!!! I would feel 100 times worse than I do now if I still had that horible colon. Its not an easy recovery...but its worth it to get the life back you all deserve. If your surgeon is recommending it....please DO IT!!!!!

Hodaya- Sorry about the flu....oh man...i feel your pain. Mine lasted six days and I had to work through it the entire time. I could not get anyone to cover for me @ work!!!! REST!!!! is what you need....a multivitamin, thera flu or some warming flu medicine, ibuprofen, and some good of Vitamin C. Keep well hydrated and sleep this virus away. Sorry sweetie.

Well I am jumping in the shower to go to my tests. I am very nervous to be filled with barium...that stuff is like cement and I am NOT ecxcited. I am afraid I am not going to get it out of me. Anyways...I will keep you updated. I do not see my surgeon until tomorrow.

Sue- I use m of m daily....its all that has ever worked for me. Its safe and ok to use every day more than once, but it does not make you feel the greatest, but then again....what does?

Remeber to all of you wonderful ladies...you all have no quality of life right now. you deserve this back and deserve to start living. Take the opportunity you all have been offerred and run with it!

Lizzie

Hello everyone,

   I am finally out of the hospital as of last week.  Was in for two weeks.  The colectomy went fine but the healing process was slow as in my 8th day I was still having pain on my right side.  They did a CT Scan and I was back into surgery a couple hours later.  It seems that my gallbladder was in terrible shape and that part of the intestine was caught under the bladder and twisted.  They fixed that and my recovery from that increased dramatically.  That second surgury on the 15th and home late on the 20th. Can't tell you how good it felt to get home!

   I am on a high soluable diet and will slowly introduce insoluable fiber food in a few days. 

   Everything is working as it should at this time.  I do take Benefiber and Immodium daily which helps.   I just have to remember that I have to take it slow for awhile - the doctor stated I would not start feeling myself for at least a month.

   Just wanted to touch base with you all. 

dear Lizzie,

when my day comes, i think i need you to be right next to me, lol, to reasure me and just hold my hand as i'm rolled into the o.r........

i wish you the best with your tests, hun. wow... 2 tests at the same day!!!!! i hope it goes as best as possible. do they give you the results right there at the same time?

oh, thank you so much for your sympathy and advice. when i get the flu, it's BAD, i mean i usually get stuck with it untill somewhere around april, but it comes and go, not continuous like all the time, it's like it goes away after 2 weeks or so, but not completely and after another 2 weeks it comes back again. it just won't leave me till it's summer. i'm really frustrated about that, as the drs. don't help me much with it. i'm taking antibiotics now and something for my running nose and i hope all of it goes away.

and as Karen well said: YOU'RE THE BEST! you really are!!!

Hello my loves....

So I think I am the most frustrated I have ever been......So hears the scoop. I had my yests this morning. I swallowed 840 ml of barium (dry heaving the entire time) and had the small bowel follow through. My small bowel looks good- it took 1hr 20 min to get to my anastamosis). SO this was good news.

Then the bad start and never stops....I directly went from sm bowel test to defecography. They could not even get the tip of the injector in my rectum. It took two nurses and four attempts. my rectum would not relax. They then inserted 3 huge syringes and i inserted one small syringe in my Vaginal canal. I did the laying part and then got to the commode and NOTHING!!!!!!! I pushed 6-7 times for 30 sec a piece and NOTHING!!!! I was not able to relase any of the barium. The radiologist said "yeah you were unable to evacuate...make sure you are drinking a lot of water today". So I am bummed....I know this is bad, but I have to get back to work and care for my pts. I stopped at the pharmacy and bought two bottles of Mag Citrate and drank them at work while I saw 13 pts for chemo. I could not eat and I COULD NOT GET THE BARIUM OUT OF ME!!!

Finally I have had some barium come out tonight after two bottles of mag citrate and 2 doses of milk of mag (I wonder what my Magnesium level is?) So then....I am leaving work and listening to my voicemail. Its my surgeon;s STUPID nurse and she says that they do not need to see me tomorrow!!!!!!!!!!!!!!!!!!!!!! They said since I have the appt at U of M they did not need to see me. Well, I disagree.....then she had the nerve to say "if you think you should keep this appointment call us and tell us why you think you need to be seen!!!!" I think I need to be seen because my rectum doesnt work and I want the results from you....also, I called his nurse two weeks ago about how my insurance will not cover me to see the Dr he wants so they recommended two others.....she was supposed to tell him and I have not heard anything back.I do not even know if he knows!!!!! She just said since "your going to U of M.....we do not need to see you". I bet he does not even know I am not covered to go there....I kept the appt for March 30!!, but they said they would cover it if I tried one of the doctors they recommended first and they were unable to offer any other further solutions.

So...now I have to call in the am and explain to a MEAN MEAN nurse why I WANT to see MY surgeon!!!! Becuase I want help......I am so frustrated...and to be honest I do not think i will  have the balls to stick up to her and advocate formyself the way I should be able to!!!!

PS....I love you girls!!!! and I would honestly fly anywhere to be at the side of your beds and tending to your recovery!!!!!! I am always here for you all and whenever your feeling discouraged I will bring you back to reality. You are all like family to me!!!!

Lizzie

Oh you poor thing! How horrible!!! It sounds like the test was just pure awful for you, I am so sorry! I hate that Mag Cit it is so nasty I hope I never have to drink it again. And then to have to deal with a rude dr.'s office and insurance people to top it all off? Sweetie I wish I was there to do it for you. Try to get a good night's sleep and then deal with it in the morning, ok? Maybe you'll feel better then. I'll check in with you.

oh dear Lizzie,

i'm so sorry to hear about the defecography  and all the mess with your dr.'s appt.
look, she did give you the option to call if you feel you still need to see the dr., so do call her and tell her all the reasons why you still need to see him. maybe she'll be cooperative, after all, she's the one who offered you to call if you feel you need to, right?

IF she disagrees, then as i've said before, and i really ment it, i strongly recommend you to just go there yourself (it's not too outrageous) and wait till you see your dr. i've been to situations like these, and at this point, when they're not being cooperative on the phone, then there's really no other way to deal with this, sweety. you have to just go there and don't leave till you get the chance to see him and tell him about everything that is going on, and that you're in a LOT of stress and pain. someone has to calm you down, and your dr. is the most right person to do that!! 

please just go there and i can reasure you that your dr. won't dismiss you, quite the opposite.. i'm sure he'll listen to you and will try to do something to help you and maybe he can even give you some kind of a treatment or advice for the barium. i hope you can get there as soon as possible, cause i'm also worried that the more you stay with that awful barium in you, the more it can cause you more problems.

i would really like to hear about the defecography report, wether it's just anismus, or is it a rectal prolapse/rectocele - is it possible you have one of those probs.? cause if it's one of those, then the STARR is a simple procedure that can fix that, but i've been told by a colorectal surgoen that the STARR is good for only rectal prolapse and small rectocele, but if it's a large rectocele then there are other types of procedures that are more suitable for that.

i love you too Lizzie, and it's so sweet of you to say you would fly all the way to be with any of us tending to our recovery... , but being here for us really feels like you're actually with us, so i'm so thankful we have this board!!

i hope you get to see your dr. asap and and get some answers. hang in there, hun, and keep us posted.

yes i agree with you judy - formal complaint is required - its a sham. thanks for encouraging us all.

AMANDA - how is it going with the bm's???? are you feeling a lot better in yourself now??

AJ - I'm sorry, but other than laxatives, I don't know what else to tell you to try. That's all I used before my surgery. I'm only a few weeks out from my reversal so I'm still going well. I hope you find an answer soon. Good luck to you!

Karen - hey there chic! Funny you should ask about my BM's today. Did you read my post on my other thread this morning ? LOL! You'll have to go read it. How are you today?

Hodaya - You are too sweet! Unfortunately I don't look like that anymore. I've lost about 20 pounds since those pictures were taken, my husband is always feeding me now. I can't seem to gain weight very easily now. I have been drinking the Boost protein energy shakes and they have been helping a little.

Lizzie - Hey darlin' how are you feelin' today? I sure hope you are feeling better today. Have you called the nurse back yet today? Let us know what's going on, k? I'm worried about you!

hi AJ
i don't understand something.... well, i don't mean to sound like a dr. and i'm defenately not one, but i just need to ask... first of all, how many bms do you have a day/week? what exactly happens?
when you have a bm, do you feel it ALL usually comes out? or do you feel incomplete evacuation?
or is the prob. is that you don't even feel the urge at all?
it depends on what the symptoms are.

anyway, if you call your dr. 1 1/2 yrs after the surgery and tell him you can't go again, then i think he's supposed to run some tests first, before deciding you should take laxatives of any kind..... i mean, how could he just tell you that on the phone without seeing you or having some tests done?????
i'm sorry, but he has to first of all rule out any possible reason that could cause the sudden change and ONLY AFTER he doesn't find anything that can cause it, ONLY then he should tell you to turn to the last resort - laxatives.

i think you should make an appt. to your dr. and ask him to run all the possible tests that can show if there's a new prob. going on. if he doesn't cooperate, then go see another dr. that will cooperate with you.
please, have all the possible tests before resorting to laxatives. i'm really no dr. and i haven't even had the surgery yet, but i think that's what you should do first.

i wish you the best of luck and hope you find a solution other than laxatives.

Amanda
after what you've been through you have to lose weight.... no doubt, just take it one day at a time, and you'll slowly start to feel like youself again. my BIL colorectal friends said it takes at least a whole year to fully recover from this surgery, and considering what YOU have been through, it's gonna take a while, so don't worry about it, it'll come.

Lizzie, i'm hoping to hear something good from you.