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Total Colectomy Part 7

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Posted 11/20/2005 3:08 AM (GMT 0)
Connie- hang in there, it does get better. I had terrible back spasms for a couple of weeks. Valium helps because it's a muscle relaxer. With the fever watch for an increase in redness around your incision line. If you see anything, let your surgeon know. When it's been a while without a BM, drink extra fluids, the fiber might be binding you up a little. The green stuff that you vomitted was probably bile ( fluid from the gallbladder) I had an ileus after my first surgery and vomitted a ton of bile.

Isn't it amazing what men can do when we are laid up. My husband stepped up to the plate. He's getting tired though. We work together so he's running the show while I've been sick. It's just taken longer than any of us expected. He's hanging in there. Little by little, I'm gaining my strength back, but it's slow going.

Happy birthday to your son. I have a 14 year old son also, his b'day was 11/4. I have 4 kids. 10-m, 12-f, 14-m, and 18-f. They're a handful.

Keep positive, and concentrate on what is better each day, not what isn't better yet. Like now I'm concentrating on my energy improving each day, but at first it was eating better each day, then the amount of back spasms was a little better each day, etc. Sometimes it's hard to see the improvement through all the status quo, so look for it. I had to.

Talk to ya'll again soon. I hope everyone is well.
Love,
Cathy
Posted 11/20/2005 9:45 AM (GMT 0)
Hi my name is ayse i was wondering if anyone can give me an advice i had i total colectomy done 6yrs ago but recently i been having alot of diarrhea i have been to the docs but its the usual just a bug they cant give me anything for it becuase im pregnant its the same every day any advice would be brilliant as im at my wits end

                           yours thankfuly

                               ayse    

Posted 11/20/2005 11:33 AM (GMT 0)

Zoe here,

You'll never believe this.  I just got out of the hospital again.  One week to the day after being released I had to go back for the exact same thing.  Got another NG tube, but this time they did a bunch of tests, upper and lower GI stuff and found out that the opening from the small intestines to the rectum is all scar tissue.  The opening should be the size of a half dollar, mine was the size of a pea.  I have to go back about four or five times for this procedure to open up the area.  It's pretty much the same thing as a colonoscopy, but they just remove scar tissue.  I should be okay after that is done.  I'm about ready to crawl into a hole and die.  There's practically nothing I can eat now and to tell you the truth, having those *&^* tubes down your throat for so long kinda of kill your appetite.  However, I do see light at the end of the tunnel because at least i know what the problem is now.

Happy Holidays

Zoe

Posted 11/20/2005 11:36 AM (GMT 0)
Hi Ayse, welcome to the group. Just make sure you stay hydrated with all the diarrhea you're having. There are some nurses and doctors on this list so they might have some more advice to give you.

Cheers,
Zoe
Posted 11/20/2005 8:11 PM (GMT 0)
Hi Cathy:
I don't know if you got any resolution on the soda issue, gingerale worked well for me. I have had trouble with diet sodas, the artificial sweetener gives me an upset stomache, I new this before all my intestinal problems even started. I have also heard about this from other sources. so you might want to stay alway from diet drinks.
I am a home/hospital teacher, I do sit down alot, but also walk alot between visits to different buildings and school personell. I do get very tired at the end of the day and have to rest on the couch or take a nap when I get home.
Zoe so sorry to hear you have had some trouble. Glad to hear you can see the light at the end of the tunnel. When I was in the hospital they gave me sore throat losenge(sp). I can't remember the name but I have seen it on TV. They are thick and round and they worked really well. I know they serve their purpose, but NG tubes suck.
Mary

Post Edited (mcatherine) : 11/20/2005 1:25:05 PM (GMT-7)

Posted 11/21/2005 6:11 PM (GMT 0)
Thanks Mary for the soda info. I haven't tolerated diet anything either. My taste has changed. I had thought about gingerale but have not tried it yet. So I will next time I go to the grocery.

Zoe- I think my bad luck is rubbing off on you. Is that procedure that they are going to do painful? Are you going to be awake? Are you drinking ensure? You've got to prevent malnutrition and dehydration. I, so feel your pain. How awful for you. I hope things go better now that they know what is wrong.

Ayse- Welcome, you've come to a good and safe place to talk about your issues. I have an ileostomy (temporary, I hope) and I waffle back and forth between diarrhea and paste like stool. The key is to prevent dehydration and bulk up the stool. French fries work for me. Peanut butter, bananas, rice, crackers, apple sauce are all good "bulkers"

How pregnant are you? Diarrhea can also be a sign of preterm labor or the onset of labor if you close to due. Good luck with that. Let us know how you're doing.

I'm about status quo. No real changes. Slowly getting my energy back. A little stir crazy at home for so long. Trying to remember how to cook dinner everyday-ugh! Quick transit time, between 6-12 hours. Everything I eat comes running out. I still have that rib pain and my right hip hurts when I've done too much. It's a strange burning pain only on the right side. That's about it for me for now.

Talk to everyone again soon.
Posted 11/21/2005 7:13 PM (GMT 0)
Hi everyone--Only have time for a quick post, at work--Zoe I am so sorry that you are having such a such rough time these past weeks, but am thankful that the docs have finally figured out the source of the eating/throwing up/obstruction problems!

Hopefully the stretching of the scar tissue will alleviate the problems and you can eat eat eat again without all the fear!

Please keep us posted on how the 4-5 procedures for the stretching goes. I will pray that it it not a painful process.
take care everyone.

sara
Posted 11/21/2005 9:11 PM (GMT 0)

Hi everyone,

Pray for me.  I am having a hell of a time with the insurance companies and getting these procedures covered.  The doctor who is supposed to do the procedure is in my group, but his surgical office isn't. And his stupid assistant just about told me well just get really sick again and then we can do it when you go back in the hospital through emergency.  I have been on the phone all day and I may have found an answer.  Just pray.  Why do we have to do the stuff that the doctor's offices are supposed to do.  I'm just about all cried out!

Zoe

Posted 11/23/2005 2:55 AM (GMT 0)
Sara- you didn't say how you are doing. Since you're at work I'll assume that you're doing OK, at least.

Zoe- isn't the insurance thing a b*tch. Hopefully, you've figured it out. I find that I have to do the medical office's work too. It's just easier to make sure it's done right by doing it yourself. I had the same troubles when I was trying to prep for my last surgery. Auth came in at the last minute-eek! When I went back into the ER with an ileus, we waited in the waiting room for 7 hours before being called back.

I got my next surgery date today. The hospital sent me papers to fill out and the date was on one of them. Feb. 6th, first thing in the morning (as requested). Hopefully the pull down (ileostomy reversal) will go without a hitch, unlike the last go round. I'm excited, but nervous as heck. Anxious to get rid of the ileostomy, though.

I hope everyone is doing well and Happy Thanksgiving to al of you and your families.
Love,
Cathy
Posted 11/23/2005 8:12 PM (GMT 0)
Hey

thanks for all the good words cathy.

I am feeling better every day. I have fibromyalgia so I know that effects me some or so the doctor said.

I have 7 kids.
28-m 25-m 23-f 21-m 16-m 14-m 12-m
yea 6 boys and 1 girl

Have a great thanksgiving

Connie
Posted 11/24/2005 4:37 AM (GMT 0)
OK Connie- you win the kid count. I can't imagine 7, it's hard enough to keep track of 4. I was lucky though, with 2boys and 2girls. My oldest is home for Thanksgiving from college. I sure do miss her. We used to do everything together.

That Fibromyalgia is a tough disease. There's no real fix for it. Glad you're hanging in there.

Happy Thanksgiving to everyone.

Cathy
Posted 11/24/2005 4:55 AM (GMT 0)

Sara - so nice to hear from you again, how are you doing?

Zoe - sorry to hear about all of the stress and illness you have been through, hang in there girl.  The stretching procedure should not be painful and I am guessing wouldn't be much more than a colonoscopy like procedure.  I could be wrong... but I dont know!

Cathy - good to hear you are doing better and glad to hear your surgery is scheduled!  Light at the end of the tunnel, eh!

Connie - glad you made it out okay and are doing well.  Fibro is rough and it will take you longer to get going, but in the end you will make it!

Amira - how have you been?  Havent talked to you in ages!

To anyone I missed... Hugs and Lots of Love!  I have been very, very busy with school.  Health wise I am fine, stress wise I am through the roof stressed.  Only 2 1/2 more weeks of school!

Hugs,

Emma

Posted 11/24/2005 6:21 AM (GMT 0)

Hi Everyone, I missed you all.  I haven't been notified of the posts, so I thought everyone just stopped talking for a while.  I'm glad to see I was wrong.

Somer, hope you are doing better, and that your D. was just a bug.

Zoe, I can't believe what you've been through.  How long ago was your subtotal colectomy?  Didn't they use anything to prevent scar tissue?  I forgot the name of the stuff they used on me -- I think it was sepra film or something like that.  I think I wrote about it previously, maybe it was in response to Sara.  Anyway, I'm glad they can fix it, and only sorry you had to go through the pain and discomfort.

Sara, I hope you are doing well.

Cathy, you sound great.  Things are turning around for you; just 3 more months and you'll be on your way to a better life, and all this will be behind you.  I'm happy for you.  Keep doing well.

Emma and Zoe, how many scorpios are in this group?  My birthday was Nov. 18.  I spent it in New York at a wedding of a relative of my husband's.  It was fun and the food was the best I've ever had at a wedding.  If fact, the food I ate during the 4 days I was in New York was amazing.  Knock on wood, I've been very fortunate, eating anything and everything that I could never eat before.  I eat chocolate by the pounds (no joke) and drink diet coke much more frequently now.  I go about 3 times a day.  I have a little tummy, but nothing like before.  In fact, I often forget I ever had tummy problems.  It's amazing.  I've been doing Pilates for about 2 months now and my weight is stable at 114, even with all the chocolate.

I too cut my hair and it's still falling out, but I got the shine back.  La Prairie came out with a hair mask that works great, but it's pretty expensive.

It's been pretty busy around here, first with the trip to Palm Springs for the funeral, then the wedding in New York last weekend.  My husband's 2 sons are in town for the holidays (one lives in California, the other in Florida).  Then on Monday, Hubby and I are going to Florida for 3 months to escape the winter, not a minute too soon giving the snow fall we had today.  After all the packing and driving to Florida, I have to go to California again a week from Monday for a conference and to visit my parents.  They haven't seen me since the surgery.  I'll be there for 11 days before going back to Florida.  It doesn't stop there: we return to Michigan March 1st, then leave again on the 10th for a 12 day sailing trip in the BVIs.  I'm excited and tired just thinking about it.  I should say that I've always hated Florida, but after the cold these past few days, it's looking better.  This is the first year we'll be gone for the whole winter, and I have to say that it's so nice planning a trip without being consumed by how my stomach will react, and what clothes will fit on which days.

Sorry to write so much, but I feel I've been out of touch for a while and I really missed you all.  It would be nice to meet in person.  When are we going to have our reunion?

Emma, by now you should only have 4 weeks left -- congratulations!  And happy belated birthday, you too Zoe.

Wishing you all well and a healthy and happy Thanksgiving!

Love, Amira

Posted 11/24/2005 2:17 PM (GMT 0)

Hi everyone,

I am new to the board and have read all of the discussions on this issue up to here (#7).  It seems like many people have gained relief from chronic constipation from having the subtotal colectomy.  I have been constipated striaght for the last 5 years and have had enough.  Fiber, Zelnorm, Miralax, MOM, none of these do anything for me.  I have an appt. with a GI in a month. 

My Question to all of you is if there is a process you used to find a Dr. that would consider this procedure.  After everything I have tried it does seem like this would be my last chance at relief.  I have been trying to correct the problem through my family Dr. but now need greater treatment.  I live in the Minneapolis, MN area and was wondering if anyone had a good experience with a Dr. around the area OR how I go about finding the right one (or if most GIs should know about this procedure for bad cases of inertia).

All input appreciated, Thank You

Posted 11/25/2005 5:31 PM (GMT 0)

Hi Everyone!  I hope you all had wonderful Thanksgivings.  I had my second procedure done on Wednesday and the doctor said I could eat pretty much everything except fruits and vegetables.  It was starch day Heaven for me.  I was careful, didn't overeat and chewed my food well and it actually came out the other end!  My next procedure (which is called a colonoscopy with dilation, your right Emma) is December 27.  They are not painful, except for trying to get an IV drip in.  The nurses tried seven times and finally gave me a shot of valium and demoral in the butt.  I was down to 85 lbs, but I've gained a few pounds back.  After all, this is the season to gain weight.  I had a piece of cheese cake for breakfast (oink, oink). I feel so much better.  Thank you all for your well wishes and prayers.

Love to all

Zoe

Posted 11/25/2005 10:23 PM (GMT 0)

Wow Zoe- what a difference.  I'm guessing you had a lot to be thankful for yesterday.  yeah Your insurance problem is resolved, I assume?  I'm so glad that you are feeling better.  And 85 lbs was dangerously low for a woman.  Malnutrition big time.

Amira and Emma- it's nice hearing from you both.  Sounds like you're both doing well.  Amira taveling the world and Emma getting beat up at school.  I've missed hearing from you both.

adwaldorf- welcome to the board.  We're here to help each other and to get help and support when we need it.  There aren't very many places or people that we can talk about such a topic. 

I hope everyone had a nice Thanksgiving.  I am thankful for this board and a great group of friends with whom I share my troubles.

Happy holidays,

Cathy

Posted 11/25/2005 10:44 PM (GMT 0)

Thanks Cathy, about the insurance, I'm going to have to pay something - don't know what yet, probably at least $500 - $1,000 this time, but my husband and I talked about it and felt it was important to get it done right away instead of waiting until I could get scheduled at the hospital.  The next procedure, on December 27, is at the hospital and the other ones can be scheduled there too.  It's our Chirstmas present to ourselves!!!

Love to all.

Zoe

Posted 11/26/2005 6:32 PM (GMT 0)
Zoe that's a great Christmas present. You are going to feel so much better when you can eat more and gain a little weight. I'm so happy for you. I get my present in Feb., barring any complications. Finally, you have a light at the end of the tunnel.

Take care,
Cathy
Posted 11/26/2005 9:30 PM (GMT 0)
Hi all,

When your Dr.'s approached all of you about this procedure (subtotal colectomy), what did the Dr. say about possible complications that may arise either during the procedure, immediately after, or long-term.  Are there big risks for problems arising from the surgery, or on the other hand, say 20 yrs down the road do they say you are more suseptible to other problems or diseases?

Take Care

Posted 11/27/2005 5:10 AM (GMT 0)
Hi Adwaldorf, isn't the Mayo clinic near you?  That where my surgeon was trained.  I understand they have excellent surgeons there.  As far as complications, the following list is what I submitted to my surgeon just before going into the operating room: ·        NO LEAKAGE!   ·        NO BAG!   ·        NO NICKS OF ANY KIND!   ·        NO SMALL BOWEL OSTRUCTIONS!   ·        NO NASAL GASTRIC TUBE!   ·        NO ENDOTRACHEAL TUBE WHILE I'M AWAKE -- UNLESS OF COURSE YOU NEED TO SAVE MY LIFE!   ·        IF UNDER ANESTHESIA FOR LONGER THAN EXPECTED, WHICH I SHOULDN'T BE, DON'T FORGET TO THIN MY BLOOD -- NO BLOOD CLOTS!   Sorry it's so large, I just copied and pasted it from my medical file.  Anyway, I made up the list with the help of everyone in this group.  And with regard to long term problems, incontinence may occur in old age, or problems with scar tissue.  But I believe the percentage was low on both counts.   Zoe, how many procedures do you need to have?   Cathy, I feel the same way about this group as you do.  I can't express enough how much all of your support, sharing and advise has meant to me.  Thank you all. Amira    
Posted 11/28/2005 8:58 PM (GMT 0)
Hi everyone,
I'm going to work today for the first time. I'll only stay a couple of hours. I don't want to overdo it. I expect the afternoon to be busy. The clinic was closed Thurs, Fri, Sat, and Sun for Thanksgiving. More to give my husband a break than the holiday. We'll see how it goes. My legs are still weak. If I squat down to pick up something, I have trouble getting back up. My legs aren't strong enough.

Amira- I read your list before but I just read it again. The only thing that I didn't get is the ET tube while awake. I think I'll take your list with me next time. It's kind of funny in hind site.

Time for a late lunch then it's off to the clinic for a while. It will be strange at first, I haven't spoke much spanish in the past few months. I hope it all comes back to me.

Talk to you guys again soon.
Cathy
Posted 11/28/2005 10:25 PM (GMT 0)
Hi everyone! I think we should all meet up in the sun with Amira!.....:) 3 months in Florida and some time in the BVIs sounds amazing and what a gift not to have to worry about your stomach!
Cathy--great to hear that you'll be at work for a few hours for the first time...it must feel great to have made such drastic a drastic improvement!

I am so happy to read that everone is doing so well...I am doing and feeling really good as long as I stick to my diet---Kind of the same as Zoe, living in starch heaven, but losing weight, slowly, but still its not good. My husband is getting is getting more insistent that I tell the doc I want to do something about the adhesions now or at last get tested to see if I need to be stretched like Zoe b/c he thinks I am looking to thin....I am not 85 pounds yet and Zoe is taller than me!...I am 90, but it still doesn't look good on me and I am so bored of starch and tofu and yogurt that I don't even want to eat anymore. It feels like such a chore to put that food in my mouth I'd rather just not....anyway sorry too ramble. Zoe did you have a colonoscopy to see that you had narrowing or a CT scan or what test did they use? Just curious.

Hope everyone had a nice Thanksgiving!

Sara
Posted Yesterday 4:08 AM (GMT 0)
Hi All,
I lost what I was typing -- just vanished. I'll try again... Cathy, I hope you had a successful day at work, and that you didn't push yourself too hard. about the ET tube, I was just going to write no ET tube, but Emma told me that it was incorrect because you needed it during surgery and that they may understand it as a 'do not resuscitate'; that's why I wrote what I did. And, don't ask me what ET stands for because I forgot eyes

Sara, I'm glad you've decided to do something about your diet. I thought the idea of waiting 4 years was a little extreme. It took me 3 years to convince my surgeon that my first surgery didn't work. It was a horrible 3 years, and it taught me that I have to fight for what I believe and not take 'no' or 'it's not done' or whatever excuse for an answer.

Well Guys, I'm exhausted: we drove from Michigan to South of Atlanta, Georgia today, and we're starting again at 6:30 tomorrow morning.

Good night,
Amira
Posted Yesterday 11:29 AM (GMT 0)

Hi Everyone!  How did it go at work Cathy?  I was thinking about you all day.  Sara, the scar tissue removal is done via a colonoscopy.  That's how they discovered it too.  I've had two procedures and will need at least two more.  They aren't painful (unless they can't get an IV in you) you just have to go through that prep.  It is modified though.  I know what you mean about diet.  I used to love applesauce and could tolerate jello but I must admit, it's getting difficult.  When people ask me what I want for Christmas I tell them sugar cookies with a lot of frosting - LOL.  NO nuts or raisins please.  I could see the headlines - Colectomy patient dies eating fruit cake!

With all the problems I've (we've) had, I'm still glad I got the surgery.  I am so happy I don't need laxatives and I can see light at the end of the tunnel for me.

Have a good week, love

Zoe

Posted Yesterday 9:24 PM (GMT 0)

Glad to continue to hear everyone is doing well, considering all of the complications and continued procedures some are having.

Cathy, Hope work went well, you are probably exhausted.  I know that first day I went back to work, even for 4 hours, was just soooo tiring. 

Well, it turns out my bout with diarrhea and pain was all caused by a little bug called H. Pylori.  I've had it before, but it wasn't as bad as it was this time.  I finished my 2 week course of Biaxin, Amoxicillin and Protonix and am glad to say, I feel sooo much better.  Amazing what the right meds can do! 

Zoe, I agree also, even though I haven't had any complications or anything, I'm so glad to have had the surgery.  Patients at work even comment to me about having "more color" in my face.  I guess it shows when you feel "full of crap" all the time (literally!!).

~Somer

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