TOTAL COLECTOMY - PART 21

Janie~

Good Luck with your prep...I feel for you. I did not have to do golytle. I had three days of liquid diet only and then 2 boxws of Ducolax and 2 bottles that enema drink...its by fleet, but I cannot think of the name of it...it was not good. I did not feel cleane dout on the day of surgery, but they did not cancel it. I think it is good that they have you taking potassium and prophylactic abx. I wish you the best....I know this is going to be the best decision you have made. I find it curious what your doc said about the 20's-30's b/c I was 27 when I had the surgery and about 20 when all of my problems really started. Interesting.....I know you will be recovering from surgery when I go to U of M and hopefully by the time you are all better I will have an answer.

Butterfly- My heart breaks that you are going through this....I would never wish it upon anyone else. I too, feel that the continued constipation has taken back over the life I got a mere glimpse of...I hope they can figure out what is going on with you. When are they going to scope you to check for a narrowing or stricture. Yes, the botox injections were horrible and painful and did ABSOLUTELY nothing!!! Why did you have those befoer surgery? Did you have problems with your pelvic floor or defecography results? Just curious.

Amanda Hodaya you both ok?

thinking of you all.

lizzie

Janie~

Yes, since I already have had my total colectomy, tried biofeedback, and botox injections, both which are the two first line treatments for anismus or continued constipation. They have discussed the ileostomy with me twice and I bawled. I have gotten more used to the idea that this is a possibility and esp with the way I have been feeling lately. I never thought I would have to do it, but i cannot live like this forever. I want my life back.

They have also mentioned sacral nerve stimulation. This sounds crazy, bit makes sense and if the U of M doc thinks I am a candidate for this it would most likely be my last option before an ileostomy. It does not work for everyone and in my experiences I have fallen on the wrong side of the percentages, unfortunately.

I need to do something and something soon and that is all I know. Mt fellow nurses said I look better this week after hydration. They said last wek I appeared yellow in the eyes and skin....so thank goodness I do not look like that this week.

That was it....fleet saline crap...lemon something flavored. ugghhhh I just dry heaved thinking about it!!!!! I will be praying for you at 9am~~

lizzie

Well, I'm taking the prep and feel like crap.  (no pun intended!).  Yesterday I ate very little, and the night before I cleaned myself out with senna, so the golytely worked today.  It was horrible getting it down, but the worst part is the antibiotics I'm taking....and the potassium tablets.  As soon as I disolved the first one in water and got it down, I threw it up.  I have to take 3 more pills tonight, and another tablet at 8:00.  I'm so nauseous....hopefully tomorrow will be a piece of cake compared to this

I'm not telling my family, but I have to admit, I'm really scared.  It just hit me what I'm doing and I am so so nervous.  I don't like reading that after surgery, I could still have problems.  I'm scared of complications, scared of it not working, scared it will work too much and I'll be incontinent....just scared.  I've been so brave to my family and friends and I honestly felt that way until today.  Maybe it's because I feel so sick right now, but I have to admit I am afraid.

Sorry to whine....but thanks for listening!

Janie

Janie, I am 40 years old, so I guess I'm the midway problem age... I wish you the best of luck with your surgery tomorrow.. It'll be alright, and it's ok to be nervous.  It's a big surgery..

Lizzie, I had botox injections the day before my total colectomy surgery.  I had problems with my anal sphincter and it not wanting to open.  When they thought you might have had a stricture, did they give you a sedative or anything before they scoped you?  Was the scoping uncomfortable?  I am frightened.  It would be wonderful if the sacral nerve stimulation could improve your quality of life again.  I don't know much about it, but if it's an alternative, I hope that your doctors will be knowledgable and encouraging regarding it. 

butterfly

Butterfly-

They did give me the "twilight".....fentanyl and versed. I had to have a ride. I dod not feel anything. He was afraid atthe time he was going to have to dilate the anastamosis with a baloon, but then it ended up being widely patent and thats when they found my sphincter/rectal problems. You sound very similar to me......I just hope its something else for your sake. How have you been feeling? how are your BM's? make sure you hydrate with the Milk of Mag...although I am sure you do not have to take as much as I unfortunately do :(

Hodaya- How are you doing? You have been pretty quiet. I am worried about you. How is your mother doing? Were they able to take her off the respirator? Keep us updated.

I hope both Karen and Janie are doing ok!!!

Lizzie

Lizzie, thank you so much for telling me that they can give me a "twilight" drug. When I was in the hospital, I had to come back again thru the emergency room and I had a very bad experience. Because of that and all of the testing that we've gone thru, I'm terrified of anymore tests. I have a counselor who's doing everything that he can this week and next before my colorectal appt, to help me learn to relax for the procedure and trust the dr's. That's a tough thing after everything we've been thru.

I read what you've been thru and I have the greatest respect for you. You have the courage to help others on this message board through all of the tough times that you're going through. I really hope that you can find an end to all of your anguish soon, and be able to enjoy the rest of your life again..

Butterfly

Hi Everyone,

Just got ahold of my daughter's computer bc she's home from college for the weekend.  I actually got my computer back today and believe it or not it wouldn't even turn on .  I was soooooo frustrated!!!!  I've had so many problems with it that I've even turned a claim into the Attorney General.  Things are going OK am basically living on pain meds right now-toradol, darvocet, and levsin until they blast my kidney stones next wednesday.  Am continuing to work as this is the first year in 7 years that I'm not sick and missing work so I don't want to take time off...people say I'm crazy but I'm sure you all know what it's like when you must continue with your like nothing is wrong even though you're in pain.

Haven't read a lot of the posts but see that there are many new people ...someday soon I hope to chat with you.

What is going on with Hodaya?  I see she hasn't been on & that's not like her...am worried about her.

Lizzie-Only a little over a week until you see Dr Chey; I continue to pray that he can help as his father helped me.

Amanda-You actually got to eat salad . Good for you!!!! I can't wait for that day...I mistakenly ate fresh fruit (was upset about work & wasn't thinking) & had such severe diarrhea that almost became dehydrated, so no fresh fruit or veggies yet but I'm very happy you can eat them.  My kidney stones are made from uric acid, not the normal calcium ones, I do take daily meds to try to prevent them and avoid certain foods but so far it hasn't worked; my Dad also had the same type .  I actually have to take a prep before my procedure on wed. but when I told the dr. that I have between 3-8 bms a day he said to only drink 1/4 of the bottle...yippee

Janie-hope everything went well with your surgery and that you are on the road to recovery...you continue to be in my prayers.

Karen-hope you are doing well also, have been praying for you

Blessings, peace and prayers,

Judy

Karen, how are you doing my friend? are you managing o.k with the ileostomy? i'm so sorry you had to experience that     hope you're o.k.

Hey girls

I am ok - just feel sore and my tummy feels heavy.  Yes I am surprised i am not freaking out by the bag - when the nurse first changed it, it was the grossest thing and smell ever.  I still hate emptying it and changing it.  I was told before surgery that i would prob have a temp ileostomy because of the prev surgery but they wouldnt know till they got in there.  so the prev surgery join was right on top of the rectum so they had to slice a little off to enable a good join.  they said the quality of the tissue changes because of previous surgeries so the join could leak.  So in a way i am glad as i dont want that! Though i have had a bit of blood leakage out of my bottom but i think it is old blood as it is dark. 

Pain-wise i only had a pump for two days - morphine.  on the second day they gave me an anti-sickness into the IV but i had a really bad reaction to it - i dont know why.  so they stopped that one.  the next day i came off all IV and took stuff by mouth, but i stopped all pain killers as they made me sick.  Really the worst thing was getting over the analgesic as i was really really sick and nauseous - but it was a delayed reaction - didnt come on badly until the fourth day after.  then i started to get cramps in the early hours - which scared me, but the drs said it was my bowel waking up and unsticking itself.  i wouldnt take anything as scared i would have a reaction to it!  Drs said morphine not good to take as could make the cramps worse so i did the right thing.  i had one buscapan injection and that is all i needed. 

it was just waiting it out really, and i remembered to walk as per advice on here and also my stoma nurse said to keep mobile.  that was hard as i felt half-dead most days through lack of sleep and pain etc.  I had one long corridor to walk up and down and i took my mp3 player and would walk for about 2-3 songs on there.  I listened to Goldfrapp new album which was just the right type of music. 

I was emotional in hospital too and (still do) cried at silly things. 

I had no appetite, but food-wise - my stoma nurse said to eat food that contains salt. e.g ready salted crisps, plus jelly-based sweets and white carbs - it thickens the output in the bag.  But i did fancy a cheeseburger strangely.  i havent had one yet.  the only foods to avoid are with skins which cant be digested.   so feeling my way.  i did eat an indian takeaway the other night, but it was a bit too fatty and laid on my stomach heavy. 

i am sure janie is ok - i doubt she will need a bag as no prev surgery.  i expect she will be out of hospital soon. xx

Hi ladies, sorry I haven't updated in a while. Things have been going well and very busy on this end. I'm in the process of starting my own event planning business so I've been working on my business plan, etc....as for my health it's been a roller coaster ride, some days are great, some days are pure heck it all depends on how much I do and what I eat. Today is just one of those bad days because I did too much over the weekend. Went out for dinner friday with my husband, went (and bought) a wedding dress for my future daughter in law on saturday, went out to dinner with my her and my son on saturday night, went to church sunday morning, and went my in laws in the afternoon and then to an Easter Cantata sunday night. I haven't been able to sleep through the night and I have no idea why. I've been up at 4am every day for a week or more and no naps during the day; now I'm just exhausted. It hurts my stomach to stand up and my back just kills me when I sit down so it's a no win situation today. Not even my hot tub helped.

On the bright side I started going to the gym again last week, lifting weights and walking, even swimming laps!! It felt great and did me some good but no gym today; I'm skipping!

I still go to the bathroom a lot and sometimes I think I go more and more every day but it's little bits at a time. I probably have a small bm almost every time I go to the bathroom and boy do I have the butt burn. I also have developed two hemerhoids that bleed a little. This sounds gross but sometimes it's the color and consistency of green baby food. Does anyone else have that or am I weird?? Sorry to be so graphic but I was just wondering. I think I go to the doctor again next week and she's going to send me for a ct scan to see if I have a kink because I have to push to get things to come out, even gas. We'll see what happens.

Anyway, that's my update.

Oh yeah, Karen, I had mine for 3 months or was it 2? I had mine from September 29 to December 15. Funny how you remember these things....

Hodaya glad things are settling with your mum.  I always chase professionals and wouldnt worry about it - especially if they say they are gonna call and dont.  it keeps them on their toes.

I did take pain med (morphine) for two days on IV pump then came off it and took tramadol by mouth but then got sickness and blamed it on that but it might just have been the anaesthetic and stuff.  I am just so sensitive to meds i know and especially anaesthetic.  

so dont freak out about that - we are all different in our response.  like i said the sickness was worse than the pain for me!  you will be fine so just take what they offer you - pain is not good for the healing process, and it will only be the first few days or so.  you will also not have a stoma either as no prev surgery, even though they will still mark you up for one which is just protocol (something they always do just in case of emergency).  so your recovery will be faster than mine. dont worry. x

Just wanted to give you all some exciting news...I got my websit up and running!! It's only one page and still a work in progress but it's there! If you want to see it you can go to www.amandasevents.com.

YIPPEE!!!