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TOTAL COLECTOMY PART 19

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Posted 9/17/2008 10:03 AM (GMT 0)

2 Ris k - thanks for sharing - no i dont remember you saying that - i know another member did have similar situation. 

My history of stress is through verbal and at times physically abusive marriage - i have been with my husband 26 years.  it was just a matter of him having a temper - no drink involved.  i was scared of him until a couple of years ago when he suddenly changed when he found out how i really felt about him and that i was serious about ending the relationship (by reading private mail) and yeah shouldve left soon i know - scared - no money, young kids etc and when you're sick you rely on your partners money ... So a few years ago i was trying to get out more and make friends, revive old hobbies etc...bearing in mind my gut problems started in 1996/7 it was hard - but something in me snapped....and i must have changed..

I can now shout and swear at him and get angry etc and he doesnt retaliate by losing his temper and being hurtful - though from time to time if he does get angry about something i can still get those old 'scared' feelings back thinking he might attack me - he promised he would never hurt me again, and he hasnt

anyway this isnt a counselling site sorry to go on...

at times i am angry if all this is a result of my fear - i wish i had been stronger when i knew things were bad...cant turn the clock back - i wonder what will happen if and when i am ever well again???

karen x


Posted 9/17/2008 11:12 PM (GMT 0)
FinallyFree - that is great advice; thank you! I never asked my dr. about the NG tube even though I did read about it on here. I know some people had it and some didn't. I guess I assumed she would tell me if I was going to have one. I'm going to be sure to ask when they are prepping me for surgery if I'm going to have one so I'll be prepared when I wake up. Also, about the pillow when walking and sleeping; I just made a note of it. It reminded me of when I had my hysterectomy, I remember how much it hurt when I stood up, I imagine it's about the same type of thing. Thank you so much for sharing!!

Karen - I'm sorry you had to go through all that, but I'm glad things have turned around for you. They would never turn around for me and I had to get out. My ex tried strangling me with phone cords, held a gun to me several times, broke my wrist, etc. etc...he even told our son that he was going to slit my throat and let him watch me bleed to death. I tell ya, it was awful! If all that doesn't cause your bowel to be in knots, I don't know what does! But, the good news is I got out and I'm living like Cinderella now and so is my son. We couldn't be happier, literally. I found my Prince Charming!

As for the surgery, every day I get closer and closer and I can't wait! And yet, I'm scared. Such a mixture of emotions...It's like a roller coaster. I can't wait till it's over and I'm the one on the other side telling you how it went!! I have to start my liquid diet on Saturday along with the pills then drink that GoLytle stuff on Sunday. YUCK!!!
Posted 9/18/2008 9:22 AM (GMT 0)
thanks Amanda - my goodness! shocked   glad you did get out - or you might have gotten killed...how terrible for you and your son.  i am pleased to hear you found your prince charming though .... blush that is so lovely..

i know nothing of the meds you have to take - i suppose that is to get the bowel to clear out?? i suppose we have similar over here but called by a different name - wow you must be really excited and anxious all at once....take care now - i wish you well for monday and a speedy recovery - look forward to hearing how you are ..eventually ..when you are well enough to post....

karen xx

Posted 9/22/2008 3:54 PM (GMT 0)
Ok guys, this is it. I leave for this hospital in ten minutes. I'm scared to death...I did the nasty prep yesterday and I lost 5 pounds. My husband said he always knew I was full of crap! :) I am so hungry and thirsty, but pretty soon I'll be asleep.

Well, I gotta go. I'll email as soon as I can!
Posted 9/22/2008 5:27 PM (GMT 0)
Amanda,
Good luck. You'll be in our thoughts and prayers. Please come back as soon as you can and let us know how you're doing!
Posted 9/24/2008 3:05 AM (GMT 0)
Hello everyone,

My name is Kim and recently was diagnosed with colonic inertia and am seriously looking into having a subtotal colectomy.

But for now, my question is for a friend of mine who had the surgery on September 8th.  She is feeling WAY less toxic and is off antidepressant and other meds and feeling like a new person since the surgery, though it was a VERY hard surgery for her.  But she's having severe cramping/spasming of the small intestine even though she's on a low residue diet. She's taking narcotic painkillers for this and thankfully that helps.  What she (and I!) want to know is, is this pain normal?  And if so, how long does it usually last?  Also, she's still very swollen and wants to know when that might start going down? She knows it's very recently since she had the surgery and swelling is probably very normal, but she wanted me to ask.

Thanks so much for any info you can provide!

Kim  blush

Posted 9/25/2008 11:10 AM (GMT 0)

Hi Kim,

Welcome to the site.  Lot's of info here.  Concerning your friend, I remember someone in past posts said they took Bentyl to help with the cramps.....She has to give her gut time to recover after surgery.  After my surgery, I was not placed on a low residue diet.  The surgeon said I could eat anything...that it would be trial by error.  If something did not agree, I was to avoid that food for awhile and reintroduce it later.

Hope this helped.....

Phyllis

Posted 9/25/2008 6:11 PM (GMT 0)
Hi Phyllis,
Thanks so much for taking the time to post. I'm so impressed with all of you on this board. You've all been so helpful. Do you kow what Bentyl is? Her doctor said he just wants to see if she can get through this without any medication (besides the pain meds). The problem is that she isn't having many bowel movements. I thought she was going to be going a lot, but she's not. And that's what's causing the pain. After she does pass waste, the pain goes right away. Is the fact that she's not having many bm's something to be concerned about at this point?

So you weren't placed on a low res diet? Isn't that usually the standard?

Are you glad you had the surgery? I'm really scared about it but don't know what else to do. There is a nutritionist named Russell Mariani who has a book and program for people with all kinds of digestive problems, including colonic inertia, and I may try that first but the problem is I'm very ill and weak and hardly able to get out of bed, and don't have much brainpower due to all the toxins in me, so I don't think I will be able to do all the cooking I would have to do for this program.... I wish I was a millionaire and could hire someone to do all that for me! I'd really like to see if this program works as he says it does. I'm going around in circles about all this, or if I should just have the surgery. But when I see the horrible pain my friend is in, I'm not sure. Though the fact that her fatigue, depression, brainfog, etc.... is gone now makes me want to have the surgery b/c I'm just so sick and miserable.... I'm just paralyzed with indecisiveness and not sure what to do....

Kim
Posted 9/25/2008 7:38 PM (GMT 0)

Hi Kim,

I have never regretted having the surgery.  With your friend...sometimes pain meds can be constipating....Has your friend tried Miralax to go...Did she have all of her colon removed?

Posted 9/25/2008 11:50 PM (GMT 0)
Hi Phyllis,

She had all of her colon removed except for a tiny part of her sigmoid - not sure how tiny, but the doctor said very small amount. He doesn't want her to take any laxatives right now b/c he wants her small intestine to work on its own. What is bentyl? Is it a laxative?
Posted 9/26/2008 1:14 AM (GMT 0)
I am not exactly sure what Bentyl is.  It is not a pain killer...I believe it is antispasmatic

Posted 9/27/2008 9:08 AM (GMT 0)
I take 1 Bentyl in the am. to help with spasms in the mornings and none usually the rest of the day. UNLESS I eat (or plan on eating!) something that I know will cause them! JUst can't resist sometimes... Bentyl can work better than narcotic pain relievers and in many cases, the doses can be lowered/tapered to only taking the Bentyl. It was explained to me that Bentyl is a soft tissue relaxant. My question - could it cause additional issues with constipation symptoms? Also, could a build up of gas be causing this discomfort as well related to the constipation? I would be curious to know what she finds works for her.... good luck to you and her both.
Posted 9/28/2008 11:55 PM (GMT 0)

Hi Kim,

Welcome to this site; it has been extremely helpful to me before and after my subtotal.  One thing that might help your friend is to drink a LOT of liquids, especially water. My dr. said about 5 bm's a day at 3 wks following surgery would be ok then hopefully get down to 2 a day; I usually have 8-10 now but was at 20 a day so the small intestine learns to take over on its own.  I am still on a low residue diet, my surgery was 7/17/08; my surgeon said i could go on a regular diet but my GI dr said to stay on the low residue for at least 4 months.  I do have to watch what I eat and what supplements  I take, everything is trial and error.  If your friend continues to have problems she should talk to her dr or GI dr they are usually very helpful.  If you have had all of the testing for the surgery and they say you are a candidate, there isn't usually any diet that will help you.  I know its only been a couple of months since my surgery but I would do it again in a second!  I wish both you and your friend the best; you're in my prayers.

Judy

Posted 9/29/2008 6:26 AM (GMT 0)
Phyllis, thanks for letting me know. I'll tell my friend about it. That might really help!

Peggy, thanks so much for your post! So, after all this time, you still get spasms? Are they really painful? My friend's are incredibly painful. I think it's definitely gas also causing her pain. I'm hoping her doctor will be able to help her when she sees him.

Judy, thanks also for writing! My friend (Lori) said she went about 5 times a day in the hospital but now maybe once a day, and until it comes out, she's in severe pain. Shouldn't she be going more?? I will tell her your suggestions about drinking more water. I'm not sure if she's doing that. She's really worried that she's not going to the bathroom more. I asked her if eating more would push things through to where she would have more bm's, but she said eating only makes her have more severe pain and spasm/cramping. I'm worried for her. But we'll see what her doctor says. Hopefully she'll start going more often. Otherwise she's feeling so much better energy-wise and mentally, since that toxic colon is gone! Did you find that to be true for you as well? She was VERY sick before the surgery from the toxins, as am I. I'm pretty much bedridden from severe fatigue and weakness from this condition. It's gotten worse as the inertia has progressed.
Posted 9/30/2008 1:39 AM (GMT 0)

Hi Kim,

Lori probably won't go to the bathroom any more than she has been unless she eats or drinks; that's what will cause her to have the bm's.  Without any food or liquids in her system, she doesn't really have anything to come out this is most likely the reason she isn't having a high number of bm's a day; but she really should be talking to her surgeon or GI dr especially if she is having severe pain.  I did feel 100% better right after the surgery, even though I had an open surgery.  I was no longer in the constant pain of being continuously constipated and I had numerous people tell me that my skin colored changed from an ashy (sp. ?) to a nice pink tone.  It's been great feeling healthy.  I'm not going to lie and say every day has been a piece of cake because of course this is a major surgery and you do have to heal, but each day gets easier and you feel better with each passing day :-) .  Feel free to ask any more questions and I wish you both the best.

Judy

Posted 10/1/2008 5:24 PM (GMT 0)
Hi Judy,
I had been thinking the same thing about Lori - that she won't go to the bathroom if she's not eating! I talked to her about that yesterday and she said she was going to eat more and drink more water. I am going to call her today to see if that's made any difference. I also have told her many times she should call her surgeon to let him know about the pain, but she said she wants to wait until she sees him next week.

I'm SO glad to hear you felt so much better right after the surgery! Yes, the color of skin is something I've read other people have experienced after having the surgery as well. I'm so glad that you're doing so well and glad you made the decision. What my friend has been experiencing has made me even more nervous about me possibly having the surgery, so hearing good reports from others helps. I'm really concerned about Lori, but hopefully eating and drinking more will help, and maybe trying Bentyl. Hopefully her doctor will help her.

Thanks again for taking the time to write. You have a good day, Judy!
Kim
Posted 10/8/2008 12:22 AM (GMT 0)
How is everyione doing?

Posted 10/8/2008 12:55 AM (GMT 0)

Hi Phyllis,

Things are going quite well; it's been almost 3 mos. since my surgery 7/17/08 so I'm still adjusting to what foods work with my system and what ones don't, but life is 100% better than it was before.  I returned to work 6 weeks after my surgery and am now just beginning to not be soooooo exhausted by the end of the day.  I will always be thankful for this new life I have compared to what I have been through.  I hope you feel the same way and things are going well for you too.

Have a great week! :-)

Judy

Posted 10/8/2008 2:40 AM (GMT 0)
Hi Judy,

I had my colectomy 6/06 and don't regret having had the surgery. Life is so much better now....Glad to hear you are doing well. Exhaustion was a biggie for me but hang in there that will get better too.
Take care
Posted 10/9/2008 10:00 AM (GMT 0)
HI all,

It is me again. I'm back.

I just want to share my current experience to cure my lazy colon. I have stopped seeing any doctors, because all the medicines could not help me at all and turn me down.

Previously i have been taking 4 tablets of dulcolax( laxative ) each day for almost 12 years and faced a lot of side effects.

Now, everyday i take 75ml of pure natural mangosteen juice, 50ml of aloe vera juice ( no sugar added ), 50ml prune juice, at least a glass of honey, at least 8 glasses of water and ONE tablet of dulcolax. It works well and i manage to go to bathroom every morning. I wish one day i dont need to take any dulcolax, because it will still bring side effects to me. I have spent 4 months for testing on these natural* supplementary including mangosteen and aloe vera juice. It works very well for my digestion. Above is just my 2 cents of sharing! i hope you all can try and it works well for you all too....

I rather rely on natural* supplementary to other chemical medicine. My dad at last passed away on 5th August due to sigmoid colon cancer. I can't find any reason why a good healthy man can suddenly passed away less than 2 months knowing that he had cancer confused

Anyway, i hope everyone stays healthy always.
Posted 10/9/2008 10:07 AM (GMT 0)
Well i am glad to hear that Mimi - just continue doing what works for you. however a lot of us, like me, find NOTHING helps much at all.
best wishes.x
Posted 10/10/2008 12:04 AM (GMT 0)
2much,

I rely on Senna also to have a BM.  I don't take tablets; I take senokot granules every 3 or 4 days and clean myself out....it works fairly well most of the time, but every once in a while it doesn't work well, and then I feel terrible.  If I had to take it every day, I'd never be able to leave the house; I never know when it's going to "work".  Generally I take it at lunch time and by 6 or 7, it's started working, and it could "work" for seveal hours.  It really is a pain.

I'm planning on having a colectomy in February.  I know it's extreme, but I've lived like this for 30 years (I'm 53) and it just has gotten worse over the years.  My surgeon agrees that it's time; I'm just hoping and praying it will work, but not to the point where I go all the time!!!

I also have a rectocele, but he's not going to do the STARR procedure until after my surgery to see if I still need it.    I just found out last week I have a large cystocele (it feels like I'm growing a penis!) and I'm having that repaired on October 20....sometimes when it rains it pours!

Good luck on your decision; I know exactly how you feel, because I have the same fears.  I just don't want to live like this anymore.

Janie

 

Posted 10/10/2008 10:46 AM (GMT 0)
Thanks Janie - yes i had a rectocele and cystocele - which was the pelvic floor surgery - fat lot of good it did me - however it did stop me peeing when i laughed or sneezed - but i have undone the good since then from straining ...that was my first of many procedures...it must feel uncomfortable for you - i didnt feel anything inside really - but the gynae said my bladder was way too low.

good luck to you too - i hope my surgery will be about jan/feb too - in some ways i cant wait, but i dont like the thought of having to get up in the night numerous times or being incontinent. i suppose the worse case scenario is that my small bowel dont work, but that is very rare.

i am eager to hear how 2 risk y is doing as her history is very similar to mine - being that she had her sigmoid removed, plus some of her rectum - i had just the STARR so i have all my rectum but it is rather narrow and apparently cant hold much, therefore the fear of incontinence.... so good that you arent having the starr until you see how you are afterwards. bye for now x
Posted 10/14/2008 10:31 PM (GMT 0)
Ok so I'm finally back home as of yesterday.  I can't believe I was one of the one that spent so long in the hospital; 3 weeks exactly.  Things didn't go as well as planned.  I went in for sugery on the 22 and everything went great.  The surgery went as expected.  The surgeon connected my rectum to my small intestine after removing my large intestine.  Then on the third day I developed an inlius which I know many people have had on here so at least I knew what it was.  They inserted an NG tube which was one of the most horrible experiences of my life!  The head nurse tried to insert it and she had no clue what she was doing and I ended up throwing up and gagging and all sorts of stuff.  It took her about 15 minutes.Then once she had it in it wasn't in the right place so they pulled it out.  Luckily for me they had an ICU nurse come in and insert it next and it only took about 30 seconds and didn't really hurt at all.

Later that day while I was in the shower I felt a horrible pain in my stomach and then developed a fever and just kept going down hill.  They scheduled me for a CT scan that night.  Immediately after the CT scan they took me to emergency surgery for a tear in my and fluid was leaking into my stomach.  The tear was an inch long and it was 6 inches above the anastamosis site.  Ironically they said it didn't have anything to do with the anastamosis to they were perplexed.  So, then I stayed in the hospital recovering for a couple weeks.  After the 2nd surgery I woke up with a temporary ileostomy.  I think  that's what it's called.  You would think I would know this since I have one now.  Anyway, I have a bag.  I'm slowly getting used to the bag.  I can get used to just about anything, I just wish I wasn't so sore and in so much pain.

I am having a hard time drinking or eating anything because I have no appetite, but I also have a fear of dehydration.  My stomach feel  so full all the time though, how am I supposed to eat or drink anything? 

My back is killing me also.  I have a pain in my chest/lungs too that hurts when I take deep breaths.  I don't know what that is related to either.

It does feel good to be home though.  I'm trying work up my stamina by walking laps around my living room, kitchen etc.  I can only do a couple at a time.

Well, I just wanted to let you know how it went.

Posted 10/15/2008 1:49 AM (GMT 0)

2 RIS K-

I was getting so worried about you. What an ordeal you have been through :( It does suck when your the one going through all the complications. Mine were much different (besides the ileus and horrible NG experiences) but also spent 20 days inpatient (but mine were two separate 10 day admissions). So they have no idea how you got a tear? that just seems so strange. Most of the time the complications arise at the anastamosis. Wow....I cant even believe how you were feeling when you work up with a temporary ileostomy. I know my surgeon told me that could happen with any type of complication becuase of the risk of surgeries so close together, but you never think it will happen to you. Do they know how long they expect you to have your ileostomy? I was praying that you were ok. I figured something had happened becuase there was no word from you in at least three weeks. Thank you for updating and letting us know you are ok. How is your family coping?

Keep up the nutrition. It helps with healing. I know with my complication my surgeon recommended 1000 mg of Vit C a day to promote healing. I think it helped a lot. How much weight have you lost girl? you werent big to begin with....and after all of this trauma I cannot imagine how fragile you are. Keep walking and keep hydrated if not anything else. Maybe you should try some ensure or canrnation instant breakfast to help with some calories and needed nutrition.

Keep us updated and talke care of yourself. Let your body recouperate and heal. It will take time, but the body is amazing.

Glad your ok. praying for you.

Lizzie

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