HealingWell
Search Close Search
☰

Total Colectomy Part 5

Support Forums
>
Ostomies
✚ New Topic locked
1 23 4 5 6
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/22/2005 1:30 AM (GMT 0)

Hi Ladies,

I just lost a long post/message because my computer is being a pain--so will make this shorter. 

Amira, so glad you are doing better now that you're home!  I hope it continues and that you're feeling stronger everyday. 

Emma, just wanted to let you know I've never had a problem with cantaloupe or pineapple and eat both fairly regularly.  The cantaloupe seems to digest/dissolve a little more easily, but both are fine.  I would suggest small bites and chewing well as always.

As for my personal info, I'm in Chicago and I think someone else is too.  Judging from other people's cities, this might be a good hub or meeting place :)  I'm originally from Iowa, so anything works.  And, not sure when or where, but I'm happy to help in planning...I actually plan events for a living.  A new convention would be fun :)  Mostly just meeting everyone and talking in person would do wonders for us all in my opinion.  I'll send my info for the contact sheet :) 

It's funny that some of you mentioned the right side pain (due to the appendix maybe) -- I had that too and still occasionally do.  It will have been 7 months since surgery for me next week.  So hard to believe.  I'm pondering a 5K for October--but have a lot of work to do to get in shape!  It's something that would make my year--after all the challenges of these past years.  Sommer-- you are an inspiration since you've done a run and have so much more going on already in your life!  Thank you!

Last, I just wanted to mention that chewing gum sometimes stimulates my system to go to the bathroom.  For those of you who still take Miralax or have trouble from time to time, it might be worth a shot.  I don't want to give out bad medical advice, but I think the chewing stimulates the motility of the intestine in anticipation of receiving food...so it might help.  heck, maybe it has something to do with an ingredient in the gum that helps.  I also remember reading an article a few years ago that more women were able to pass their first BM after giving birth with the aid of chewing gum than those who did not.  So, for what it's worth...you might try it.  I find sometimes that I'll chew gum at work and within a couple minutes, I have to go (again!).  I've plateaued since surgery and still go a lot...but the gum makes me go whether I've just eaten or not.

So, that's all...sorry to have lost the first message.  I have to go for now and get ready for my day tomorrow.  Take care everyone--it's great to be part of such a close-knit group on a board--even though most of the time I feel like I don't have much to contribute because surgery was so long ago and all of our situations are different.  Be well and smile :)

Avery

Posted 8/22/2005 2:02 AM (GMT 0)
Gosh, you don't post for a few days, and you really miss a lot!  tongue

Welcome Shelbs, hope you find this site helpful, I know lots of us have.

Emma, I haven't had trouble with really any food, except carbonated beverages.  And, I too, look at what comes out just to make sure.  I few weeks after surgey, I was working at Saturday clinic, went for usual bathroom break, looked down and saw the reddest, most horible looking stool.  I nearly passed out. I got so scared, that I did a hemoccult test on myself (Emma, I know you know what I'm talking about!) to make sure it was blood.  Thank goodness, it was negative.  Turns out I had some Hawaiian Punch that morning and it turned my stool red.  I'm so glad I figured it out before I called the doc.  That would have been so embarrassing! 

Amira, I'm glad things are going well for you. 

Posted 8/22/2005 2:38 AM (GMT 0)
Thank you all for the nice welcoming.  I do feel blessed to have others going through this process, so I thank you for your comments.

I have spent this entire day reading through each chapter you have written each other, which is extremely helpful.  I am very active and enjoy working out, so I'm happy to hear most of you were able to continue your activities soon after surgery.

I have been researching other avenues for me to take outside of surgery, but like you all I have tried everything from Laxatives, MOM, golitely, enemas, Miralax, fiber, etc.  I know I can't live like this, so my question is, is there another solution besides surgery?  At this point, there are more pros than cons on getting the surgery.

Kelly--to answer your question, I live in Arkansas and have been seeing a specialist in St. Louis.  I have researched my doctor and her credentials, which are top notch.  I am however weary of who to choose or trust with this surgery.  How did each of you pick your doctor?  One thing I am excited about is my doctor said she could schedule my surgery in two weeks.  Is that normal?

 

Posted 8/22/2005 6:24 AM (GMT 0)

Somer - big LOL at your post.  I had something similar to what you did, except I realized that I had eaten a dinner with tomato sauce in it before I freaked out, so then I relaxed!

Shelbs - I will TRY not to get long winded here.... but I am not good at short answers!

Worst part of surgery - the prep by far.  I had problems with it and I was throwing up and stuff, so I had to be hospitalization for dehydration.  I was the one that had the tube, its called a nasogastric tube (goes down the nose and into the stomach) and the only reason I had it was to give me go-lytely.  It didnt work real well.... and I did not have the tube after surgery!

Diet - I was on nothing for the first 2 days, clear liquids the next day, full liquids 2 more, then I had a little set back and started throwing up so clear liquids for 2 more days and finally full liquids the last day.  I was on a full liquid diet for one week when I came home, and then a soft diet for 2 more weeks.  Just Thurs I started a general diet, although I havent had hardly anything that wasnt on the soft diet list.  I had a very conservative surgeon because other people on this list were able to eat much sooner, but on the other hand I didnt have diarrhea or nausea at all.

Weight - I lost 26 pounds in 11 days... it was a little rough on my system... I have been slowly gaining a little bit back!  I am waiting for the OK to exercise (I had a small split in my incision after I got home) and as soon as they sayit is ok I will be going back to it so the weight should stabilize.  My doctor will NOT let you diet for 6 months, unless its weight watchers.  Also the most important thing you can do is drink... at least 64oz a day, even if you dont want to!

Recovery - I am a lucky girl... although I have had to deal with an allergic reaction and a split incision I have been doing great.  I went out for the first time one and a half weeks after I went home (was in hospital for 9 days which is longer than most)  I was driving 2 days later, and there hasnt been much holding me back.  I am not back to work, but I work as a nurse and do alot of heavy lifting, so that is why.  I have been enjoying the time off anyways.  But, I have been doing housework and running errands and stuff and I am fine, I just get tired easily!  I took ibuprofen the first weekend I was home, and about 1 1/2 weeks ago I stopped taking it.  I have some pain, but it is not a big deal. (I have a pretty high pain tolerance)

Surgeon - ask around, ask to speak to a former patient... and sometimes you just have to go with your gut.  Generally it is a pretty simple surgery by surgeon standards, the person with the hardest job is the patient and the small intestine!

If you wanna chat further, feel free to email me.  Shelbs it is nice to have someone else my own age (I love all of you ladies but I am the youngest one)

BTW I am 25 years old too, from Wisconsin :)

Just got back from dinner and a movie... and yes I had the potato skins... and I am doing fine! 

Hugs,

Emma

Posted 8/22/2005 12:52 PM (GMT 0)
Shelbs,

I think the worst part of surgery to me, was the hospital stay.  I was in the hospital for 6 days, but had some trouble with vomiting, which delayed my discharge some.  Had some bad experiences with the nasogastric tube myself, mostly b/c I am a terrible patient!  My doc did not restrict my diet after surgery, and I haven't had any major problems.  I don't have much pain, just some gas type pains. 

All in all, surgery was my best option, and I am sooo glad I did it.  I found my surgeon on my own, I did not like the surgeon my GI sent me to.  It was really important to me to feel comfortable with him.  He also had done several surgeries like this for women with the same problem, so I didn't feel like he was skeptical about my problem.  My doc also could schedule me that fast, but I opted to wait about a month or so just to get ready. 

I am 6 months out from my surgery and it is GREAT!  I hope all works out for you just like it has for so many of us here.  I am 26 years old also, so I know that this surgery seems major and drastic for someone our age, but I also know how awful it feels being sooo constipated and crampy and just feeling plain terrible.

Emma, I pay very close attention to what I eat and drink now, so I won't have any surprises later!  Yummy, tater skins!  Ever get those chicken fries?!

 

Posted 8/22/2005 3:36 PM (GMT 0)
Somer - thats right I forgot you are a young-in like me!  I didnt get the chiicken fries on Friday and they were ok.  Like totoally not worth the fantasy, ok, but I wouldnt drive across town to get them again... just ok!   Suprisingly enough, the potato skins and buttermilk shrimp I got at Applebees was also just "ok" ... food just doesnt seem to taste as good.. I dont know if that is psychological or what!

Shelbs - forgot to tell you last night that I met with my surgeon for the first time on July 5th and I had surgery on July 20th.  I felt confident in my decision so there was no need to wait.  Also I have to teach and take classes in the fall, so I wanted to get it done as soon as possible so that I would be strong enough.  Have you had the other tests done: colonoscopy, protocogram, etc?  I wouldnt have surgery without those tests.

Hugs,

Emma

Posted 8/22/2005 4:06 PM (GMT 0)
hi everyone--Gosh I have so much to catch up on! I just wanted to say hi and that I would love to have mett up at our own convention!  I am in Chicago too.  RIght now I'm in NH and it's n ow too easy to get to a computer so I have to make this brief--just wated to say that I too had horrible right side pan and spasms, but Ihave been eating only rice and tofu and yogurt....a really really soft diet--no applesause even b/c the doc said....anyway I have been feeling so good and now I am afraid to try to intoduce new foods--I ate three pieces of honeydew and got those horrible pain/spasms so I don't know....I feel so good that regular food doesn't even tempt me anymore...wierd. I am also off the Miralax...It's a little difficult to take laxatives and your in-laws I mean I can't run to the bathroom all the time here.......But I think my system is adjusting--I am going like 10-15 a day without the Miralax--I was going less on the Miralx b/c I would go alot at one time now I just go a little bit at a time.

Amira--I am gald to hear you are taking it easy.....

Emma have you tried the potatoe skins? 

What does everone take for the right sided pain?  I take Librax to stop the spams, but it doesn't have any pain killer.....

Take care gals...I'll be back on my own computer by the middle of next week so I can read all the posts that I've missed.

Sara

p.s. sorry for all the typos--i am trying to write this super fast

Posted 8/22/2005 8:51 PM (GMT 0)
Maybe we should have the convention in Vegas... LOL i could use a little vacation in a few months! :)

Just a thought,

Emma

Posted 8/22/2005 11:07 PM (GMT 0)
Ladies,

Please don't forget to let me know your e-mails so I can get you on the colectomy list.  My e mail is [email protected].  I posted this information earlier, but sometimes messages get lost in all the replies.  I'm trying to compose a list with names, addresses, phone numbers, ages, any information you would feel comfortable letting others on this list know.  I would e-mail you the list as I update it. 

Cheers

Zoe

Posted 8/23/2005 12:21 PM (GMT 0)

Ohhh, Vegas! yeah

Zoe, my email is [email protected]

Posted 8/23/2005 1:46 PM (GMT 0)

Zoe,

My email is [email protected].

Posted 8/23/2005 11:13 PM (GMT 0)

VEGAS !!! Sounds good, but I have never flown.  I am afraid.  IF and IF is a big one.  I will need someone to meet me at the airport, because I will have taken 2 valium before take off.  eyes Hopefully, they will attach a parachute to me in case of emergency. Then, someone has to kick me out.  Maybe I could hook with you Chicago area ladies.  Maybe your flights would go thru Cedar Rapids, Iowa. 

Seriously,  I have been having small, pellet like stools.  Below my navel it is very sore and tight.  I try to strain to go and that makes the pain worse.  I don't think the food is moving down.  I have drank the Sunny D (tangerine flavor), eaten apples and tomatos.  I still think that some types of food stay around longer and others pass over them.  I am going back for another Dr. visit on Monday.  If I call, not sure they can do anything for me over the phone.  Suggestions welcomed.

Avery - Where in Iowa are you from?

Kelly

Posted 8/24/2005 12:21 AM (GMT 0)

Kelly - try some high fiber foods.  Make sure you are drinking enough water. DO NOT STRAIN!  Try some warm liquids, chewing gum, maybe some stool softeners or how about some Benefiber over the counter.  If all of these do not work, you need to call!  You dont wanna do any damage to your anastomosis site.  The spot where the small intestine is joined to the rectum is just above the pubic area, so if that is where your pain is you need to call!

God, I sound like a nurse... get it out of me!  LOL j/k I love to help people.  As far as the plane... come through Green Bay and I will take care of you! :)

Just got back from the follow up and the doctor says he doesnt need to see me ever again!  Yeah!  (unless I have a major problem) he says I am doing great and not worry as long as I go every 1-2 days.  He said I am a rarity though because most people go more than this and suspects that my entire GI system is slow moving... but thats ok!  I can go back to weight watchers, and I can eat whatever I want to (although he encourages high fiber diet) and I can walk and swim (no weights or lifting though until sept 15th) but still.. I am a happy girl!

Hugs,

Emma

Posted 8/24/2005 12:33 AM (GMT 0)

Emma aka HAPPY GIRL - Bravissimo !!! for your post op visit. 

FIBER - I am so afraid of fiber, so afraid.  When I ate my raisin bran, it seemed like it just got stuck there and did not move. Same for oatmeal. I have benefiber.  But, if things are moving slow thru the small intestine, will the fiber still help?  I just want to eat and poop with no problems.  Like I said, I go back to the surgeon on Monday the 29th.  Untill then, I am really going to be choosey on what I eat and not eat very much.  I will continue to drink water. Coffee when I can.  What flavor Sunny D did you drink?  Hot chocolate counts as a warm drink?

about weight watchers, I want to stay at this weight now, maybe about 5# less.  I think if my surgeron ok's it, I would like to try that drug Meridia.  Just to stave off my incredible need to be constantly eating, I mean it is incredible.   Does anyone have any other suggestions here, something in a healthfood store or OTC.

Kelly

Posted 8/24/2005 1:32 AM (GMT 0)

DO NOT go on Meridia!  You do not need a drug to control your appetite, especially if you are not obeses.  You need to make decisions!  As far as the fiber, I actually got the lecture about the high fiber diet.  They WANT you to have a high fiber diet and they WANT you to have fruits and veggies in large amount.  I always drank the Sunny D Smooth version and it works well, although I havent had any in weeks.  Honestly, if something was seruiously wrong you would feel worse.  If you are not nauseous I would keep eating, especially high fiber foods and drink that hot chocolate!  Honestly if you had an obstruction, you would be nauseous and throwing up right now!  At least you are able to put food in and get food out.  You were the one with the rectal problems right?  Perhaps you need to be dilated... or perhaps your anastomosis needs to be dilated.. just some thoughts!  But really... if you were obstructed your body has a way of showing you its NOT happy!  How about trying a high fiber food that you havent tried yet, like just a few bites!

I dont know... when I am happy I just want everyone else to be as happy as I am! :)  Im off to go to Kohls and then buy my office fridge... Yeah!

Hugs,

Emma

Posted 8/24/2005 12:19 PM (GMT 0)
Emma-Sounds like you are doing awesome! Congratulations! I would love to get your email address...I'm new to the sight, so I don't know if it's somewhere hidden and I can't find it.

I have been dying to write everyone, but my work schedule has been crazy hectic. I work long hours during the day and night when duty calls, but I am trying to find the time to hop online to chat!

I talked to my GI doctor the other day and she wants me to go up to St. Louis and have another Biofeedback. Apparently I failed one out of the three tests, so she wants to make extra sure that I can empty on my own due to the fact the surgery is pointless if I can't. Did any of you run into this problem?

I do have to say I get a little nervous when I hear some of you say you are having trouble still going. Is it because it is right after your surgery? When your further out of surgery you should be going regularly, right? I guess I being over cautious. I hope I don't offend any of you by asking.

I do worry about the weight issues. I am currently 5'4 and 110 pounds I don't want to gain and I especially don't want to lose weight. Is it hard to maintain your weight?

Well, I better get to work. I will try and write more tonight!

Shelbs
Posted 8/24/2005 12:21 PM (GMT 0)
Emma-Sounds like you are doing awesome!  Congratulations!  I would love to get your email address...I'm new to the sight, so I don't know if it's somewhere hidden and I can't find it. 

I have been dying to write everyone, but my work schedule has been crazy hectic.  I work long hours during the day and night when duty calls, but I am trying to find the time to hop online to chat!

I talked to my GI doctor the other day and she wants me to go up to St. Louis and have another Biofeedback.  Apparently I failed one out of the three tests, so she wants to make extra sure that I can empty on my own due to the fact the surgery is pointless if I can't.  Did any of you run into this problem?

I do have to say I get a little nervous when I hear some of you say you are having trouble still going.  Is it because it is right after your surgery?  When your further out of surgery you should be going regularly, right?  I guess I being over cautious.  I hope I don't offend any of you by asking.

I do worry about the weight issues.  I am currently 5'4 and 110 pounds I don't want to gain and I especially don't want to lose weight.  Is it hard to maintain your weight?

Well, I better get to work.  I will try and write more tonight!

Shelbs

Posted 8/24/2005 11:28 PM (GMT 0)
Hi, Shelbs,

Welcome to this group.  I received so much information and I didn't go in here until after I had my surgery.  It's been 3 months since surgery and I'm doing very well.  I'm back to work full time.  I have about 8-10 BM's a day but I don't have to sit near a

bathroom because I can hold it until I get to one.

I can eat just about anything except potato chips give me some problem.  The worst part of the surgery (I

was there 8 days) was the NG tube which I had in for

4 days because of not being able to keep any liquids

down and vomiting due to a lot of gastric juices in my stomach.  I lost weight - 25 lbs., but have gained back

14 and have a nice, flat stomach-- before surgery I looked like I was 3-4 months pregnant all the time.

I'm glad I had this done and wish I had it done much

sooner than going through all the crap with all the laxatives, enemas, etc.  By the way, I'm 57, so you are young and should recover very well.  I'm from

GR, Mich, and they have a local clinic which only deals with colon problems so I had a very good doctor.  If you want to e-mail me, its [email protected].

Keep in contact in here so we'll all know how you are coming along in your decisions, etc.

AnnieC  tongue

Posted 8/24/2005 11:41 PM (GMT 0)
Hi everyone, my name is Cathy. I've spent the last week reading all the way back to total colectomy part 1. I feel like I know you all already and I thank you for all your stories. Most importantly, I've discovered that I indeed am not the only one in the world with colonic inertia. I have been feeling rather abandoned on a deserted island. I anticipate being referred tomorrow to a surgeon for a subtotal colectomy. I have a million questions swirling around in my head. But, as you all know this is a hard topic to discuss with just anyone.
I too, have always struggled with constipation. They told me that it was all in my head. Or, have you tried a stool softener? I have tried everything!!!
I don't want to bombard you with a ton of questions all at once, I might overstay my welcome, so I start simple: what exactly is the difference between total and subtotal colectomy, what is spared?
Please help the newbie.
Thanks,
Cathy W
Posted 8/25/2005 1:06 AM (GMT 0)

Cathy,

Hi, welcome.  You will not overstay your visit.  Thanks for reading all the way back to part 1.  I joined in during part 4. 

To answer your question.  A total colectomy is the entire removal of the large intestine, attaching the small intestine directly to the rectum(I hope that is right gals).  A subtotal colectomy is a removal of some great length of the large intestine and attaching it to the small . I had the subtotal surgery on June 27.  I had all removed but 12" of the large intestine removed. Still not sure why that length was left, gonna ask on Monday at my surgeon appointment.

Yes, we ALL have heard the "it's in your head" line a million times.  But, that is why we are HERE.  It was not in our head, it was inside us and not working properly.

I gotta run.  Hope to spend more time in another message.  Will you please tell us your age and where your from.

Kelly

Posted 8/25/2005 1:17 AM (GMT 0)
Kelly - are you feeling any better?  How are things going.. :)

Cathy - welcome to the group!  It is not possible to overstay your welcome.  I smile with every new member that comes because I feel like I can make a difference in their lives.  Feel free to email me EVERY question that you have... I will answer as best I can.  Reading all of the posts is a good place to start, but even still it is great to have someone answer your questions.  My email for ANYONE who wanted it (and please feel free to email me anytime) [email protected]

Shelbs - your doctor is a smart one!  The concept of the defectography is to make sure that IF your stool was softer and able to make it into your rectum.... you would be able to poop it out (sorry if that is graphic).  IF you dont pass this test... you wouldnt wanna have the surgery because it would be a complete failure and you would be putting your health at risk.  Biofeedback and stuff like that are emabarrasing, but they are the best option for you!  Let us know how it goes!  :)

I am back to work for the first time tomorrow morning... 8 hours, and I know it is crazy busy.  I talked to my good freind who is the night shift charge nurse, and she promised me an "easier" team... LOL :)

Hugs,

Emma

 

Posted 8/25/2005 3:47 AM (GMT 0)

Thanks everyone.

Tomorrow I want to ask my gi guy if we've checked every other potential causes for my inertia.  From what I can tell, I don't have crohns, uc, celiacs disease, diabetes, or insulin resistance.  Am I missing something?  Now that I have a diagnosis, it all totally makes sense.  And surgery is the only thing that makes sense in trying to fix it. 

My son (he's 10 now) had intussuception (I never could spell that word) at 8 months and lost his entire large intestines.  So I am not completely new to the concept.  He's perfectly healthy now and wins EVERY fart contest.  But it's still really scary. 

Oh yeah, I'm 39 and live in Arizona.  I'm married and I have 4 kids.

I'll know more tomorrow.  I'm nervous about more tests.  I've failed the Sitz Marker really bad, done the colonoscopy (1 benign polyp removed), had to had a flex sig, awake, all the way up to the hepatic flexure where he delived 3 fleet enemas to try to unblock me, with minimal results.  But that's all they have done beside failing the medicines.  Funny how we fail the medications, and the medications do not fail us!?!  Zelnorm, docusate, miralax, senna, mom, the list goes on and on.

Thanks for any info and I'll let you know how it goes.

Cathy

Posted 8/25/2005 10:00 AM (GMT 0)

Emma - I am feeling a little better.  I have had some relief.  I will ask Monday, but I think that my small intestine motility is bad as well.  I have had a lot of stuff pass that I know was sitting in the small.  It is so painful.  I still have that pain below my navel and to the right.  This might be where it gets "hung up".

Cathy - I had a flex sig awake also.  Lucky for me I was cleaned out.  It is a eye popping experience.  I mean it hurts so much your eyes pop out.  That is where I saw the damage that the laxatives had be doing to my large intestine.  I remember a test where they put a lighted scope down my throat, thru the stomach and into the small intestine and left it there for 8 hours and made me eat. I even helped push it thru. This was about 14 years ago.  Did anyone one else have anything similar? Probably not you young-ins ;)

Shelbs - In addition to the subtotal colectomy I have a tight rectum as well. I am thinking about taking biofeedback for it.  I won't know till November if I am a candidate.  It is called dysynergic deffication.  The Dr. I was seeing has put information on the web about it.  His name is Dr. Satish Rao.  He is a research Dr. in Iowa City, Iowa.

It's 4.57 am time to leave for work.  Buona Fortuna oggi EMMA !!!!!!!!

Kelly

Posted 8/25/2005 5:30 PM (GMT 0)
Hi again,
The GI doc says that I'm a good candidate for the surgery, and that at this point there are no other options. So, if my PCP and GI docs can decide who has to write the referral (currently neither believe that it is their jobs) then I should have an appointment on Monday with a colo-rectal surgery. Oh how I hate the insurance game!
I'm not sure what to try right now. I have a blockage at the hepatic flexure. Everything that I do pass is working it's way past the blockage, which is very crampy and painful. I know really understand the term "pencil thin" stool. Enemas don't work that far up, and I barf the colyte back up. I'm so full that I have nausea most of the time, and vomit if I eat too much. I did try Sunny D since it's not on my usual diet, no luck. Any suggestions welcome.
Should get back to work.
Thanks for ya'lls help.
Cathy
Posted 8/25/2005 5:32 PM (GMT 0)
We really need spellcheck on this program!
✚ New Topic locked
123456