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Posted 10/3/2005 1:16 PM (GMT 0)
Do you think a general surgeon can do a good job with a total colectomy or would a colorectal surgeon do better? 

Hopeso

Posted 10/3/2005 1:21 PM (GMT 0)

I am not sure if it is a colectomy or ileostomy.  Sorry, but it is the removal of all, for ulcerative colitis. 

hopeso

Posted 10/3/2005 2:25 PM (GMT 0)
Hello Hopeso.

If you are having all of your Colon removed then you will be given an Ileostomy. Thats what I have too and for the same reason as you UC.

My understanding is that although a Colorectal surgeon would usuely be the one to do the surgery,if for instance you were taken in as an emergancy,then a general surgeon should be quite capable of doing a good job of the procedure. That is what my Colorectal surgeon told me anyway.

I hope that helps

Sue
Posted 10/3/2005 2:55 PM (GMT 0)
Thanks Sue. I am so confused, an sick and angry with this medical system. I just got out of the hosp. and the GI told me that if I were his patient and had been having UC or 11 years and not able to do well on meds, he would recommend I get it all out. He looked in there and it looked bad. I asked him if he would do the recommendation for me and he said no because he is in the same group of Dr.s that My GI is in and that would be stealing his turf. I'm turf. My Dr. wants me to take all those drugs forever and once he had sent me to a colorectal surgeon, and then changed his mind. So now he won't recommend me for surgery. Sue, I did go into remmission for a while on the molo-cure, and now the FDA has shut them down. I was hoping I could keep my colon until after next July when my son gets married. He is worried I will walk down the isle and make stinky noises all through the wedding. Yes he is self centered, but I was too at his age. I just tried to talk on the phone and I am so low on iron that I can hardly breathe and talk at the same time. I have been reading all the posts on the total colectomy thread, but don't understand if these guys are talking about pooping in the bag or in their bottoms. Can you explain it to me. I am so dumb.
Thanks, Hopeso
Posted 10/4/2005 3:49 PM (GMT 0)
Hello again.

I realy do feel for you,it's obvious from your post just how down you are feeling and it's totaly understandable that you are feeling that way. And you are not "dumb" It's a horrible disease and will make you feel low,so having the worry of Doctors not listening to you and the possabilty of surgery which half the time doesnt get explained properly,your sons wedding etc. You have very good reason to feel this way.

I think the first step is to speak with your GI again. Keeping in mind that this is "your" body and if the medications are not working for you and you realy feel that you want to consider the surgery then tell your GI how you are feeling and if he wont listen then ask for a second opinion. I think I am right in saying that he will have to arrange that for you and if it is arranged through him them maybe the opinion of the second GI won't be seen as "stealing his turf"

I must admit that I have not read all of the posts on the "Total Colectomy" thread. But when someone has that procedure done then usuely they will either have a permenant or tempory Ileostomy, which is when the small intestines(the end of wich is called the Ileum)is brought out onto the stomach and you have a bag attached.Or a J-pouch,where a pouch is formed from the end of the small intestines and it is brought down low inside so that you do go to the toilet in the normal way but because there is no colon, what is passed into the toilet is usuely more watery than a normal bowel movement and from what I have read a person with a J-pouch will use the toilet about 6 times a day once everything has setteld down. I am definatly no expert so if anyone out there believes I have said anything wrong about this procedure then please feel free to add your 2 cents worth.

When you say that your son is worried about you "making stinky noises" on his wedding day,I am presuming he is talking about "the bag" This is something that everyone with a stoma does worry about but let me assure you that there are many things that you can do to help prevent noises. There are tablets that can be taken to sort of soak up any gas and also things to put in the bag that can help. A stoma nurse or boards like this can always help in that area. and you also learn what you can and cant eat so as to prevent gas. And if you are as fortunate as me then you will hardly get any gas at all reguardless of what you eat. My stoma makes a bit of noise first thing in the morning after my first cup of tea but other than that it's usuely quiet for the rest of the day. My daughter is getting Married in May and I would be lying if I said that I am not concerned at all about things going wrong such as noises or a leaky bag etc. But the way I look at it is that I havnt had any majour disaster with the bag in over two and a half years,and also if I had not had surgery then there would have been far more chance of me having to run off to the bathroom because of my UC.

I thought that I saw a thread somewhere here that said that the Molocure tablets or whatever it is was now available again. Maybe you will be be able to try that again.

I hope that I have not confused you with my rambalings,and I realy hope that you will be feeling better soon with what ever you decide to do. Please keep us informed.

Take care

Sue
Posted 10/4/2005 6:38 PM (GMT 0)

Hi Sue,

Thanks for the support and info.  I do so appreciate your posts. I sometimes feel like I am going to _____ or get off the pot like my Momma used to say.  Someday I will have to make up my mind weather that colon stays or goes.  I was ready 2 days ago and not ready today.  What is wrong with me?  I have been out of the hospital a couple days now and so since the day was totally beautiful, I decided to go up to the gothic church where my son is to be married in July, and go over the contract with the event coordinator.  I felt better to be in fresh air and the college campus where this church is, is gorgeous, and overlooks the river.  Anyway I went to the office and they took me and we went to an office and they shut the door and told me that I had better get ready for bad news. ( reminded me of the doctor) They said that they were cancelling all the weddings for next summer, due to problems with the old church and water.  I couldn't believe it, and wondered if I was just having some sort of prednisone induced hallucination.  But no, it is real.  The kids are having 250 people, and they have a signed contract etc.  But now they have no place to get married.  I spent the rest of the morning going to all the churches in the area and met my hubby for lunch.  I had already made up the flowers and garlands, and things that were all in the gothic style.  Each nook and cranny and stairway and alcove has something to put in it.  All are in my basement.  I guess I will have a heck of a garage sale.  I thought I was going to get the jump on things, oh well.  Now I'm pooped, literally, and so tonight the groomzilla and the bridezilla are coming over and we will have to find a plan B.  Most of the churches are booked up and some won't marry you unless you are a member.  Time for a nap, thanks again. Hopeso 

Posted 10/4/2005 7:57 PM (GMT 0)
I hope that your son will be able to find somewhere to be married. Thats awful that the church canceled. Don't be too hasty about selling off all your garlands and things because you might still be able too use them yet.

By the way I forgot to mention in my last post that there isn't any smell from the bag because it is all contained. Until I have to empty and 3% hydrogan pyroxide deals with that so I am never embarresed.

Sue
Posted 10/5/2005 4:22 AM (GMT 0)
sorry to interupt, but I have a small question....how does 3% hoydrogen pyroxide help with the emptying of your bag? I too have an ileo, but I didn't quite understand what you meant. Thanks for explaining it to me in advance!  

Posted 10/5/2005 4:26 AM (GMT 0)
Also, I forgot to mention, I have a general surgeon who has done all 10 of my colon surgeries! He is great, and I wouldn't trade him for any colon speacialist or surgeon around! I think it's all about who makes you feel the best about the surgery, and all the medical things involved. someone who will respect you, as a person, and not just a respector of the disease!  :-)
Posted 10/5/2005 11:53 AM (GMT 0)
Hi Tammy

I always put a small amount of the 3% Hydrogen Pyroxide into my bag after I have emptied. It is just brillient stuff for dealing with odour. I read about it on another message board a few months ago and I was amazed at the results when I first tried it. There just isn't any odour anymore when I empty the bag. It's important that you only use the 3% though because the other strenths they do are much too strong. And it's realy cheap as well.
Posted 10/5/2005 5:46 PM (GMT 0)
Thank you bag-lady!!!!! I just went and put the "odor killing" solution in my bag, I hope it works as well for me as it has you!!! Thanks Again!!!!

Posted 10/6/2005 11:03 AM (GMT 0)
Oh please come back and let me know how you got on with it. I forgot to mention that you will need more than a couple of drops though. I havn't exactly measured but I put about 10ml I think.

Sue
Posted 10/6/2005 1:35 PM (GMT 0)

Hello Hopeso,

I am one of the ladys from the total colectomy thread.  We all go out our bottoms, not thru a bag.  I had a general surgeon do my laprascopic surgery in June.  He did a great job.  I did not have UC and I can't recall any others that did.  We had the surgery because we failed to have bowel movments and depended on laxatives for relief.  Kinda like how your depending on medications.

If you have anymore questions, I will try to answer.  What part of the country are you in?

Kelly

Posted 10/6/2005 3:22 PM (GMT 0)
Hi Kelly,
I am in Kansas City Missouri. So you guys all have the j-pouch? You mean my constipated husband may have a real problem too, not just me. He has taken laxitives for years, and can't go unless he does. I am just the opposite. Am I understanding you correctly? I don't understand, but it seems like at one point your bowel just wouldn't function at all. Is that right?
Thanks, Hopeso
Posted 10/6/2005 8:45 PM (GMT 0)
Go to a colorectal surgeon for surgery.  If your doctor won't send you, get a second opinion from a colorectal surgeon.  Most insurances will pay for a second opinion.  I was diagnosed for 11 years with ulcerative colitis and then found out that what I really had was Crohn's disease.  I had to have a total colectomy (ileostomy) performed because my colon was so extremely ulcerated.  My gastroenterologist sent me to a colorectal surgeon because he said that, with surgery like this, you want someone who does this day in and day out.  I took his advice, transferred hospitals, and had the surgery.  It was the best thing I ever did for myself.  I regained my health.  I can do anything I did before except wrestle and move the piano during spring cleaning.  DARN!  tongue Also, by going to a colorectal surgeon, they may be able to save the rectum, etc. and perhaps you can have pull down surgery at a latter date and get rid of the pouch.  I can't do that because, with Crohn's disease, it usually isn't successful.  But they do that all the time with ulcerative colitis patients...at least that's what I have heard.  A general surgeon won't be as skilled in these intricate areas.  I wish you the best of luck.  Remember, it's your body.  YOU are hiring the doctor and YOU are paying him for his services.  YOU are the one who will have to live with the results of surgery.  YOU are worth the very best surgeon you can find that your insurance supports.  So, do your homework.  You can find out so much on the Internet about doctors!  You are worth the best!  :-)

P.S. 

I'd get rid of that primary care physician if I were you.  He cares more about the professional "turf" then he does his patients!  You need a doctor who puts your best interests FIRST!

 

Sherrine

Posted 10/8/2005 4:28 AM (GMT 0)

Hi baglady!

Just thought I'd tell ya the results I had from the hydrogen....magnificent!!!!!!!! It really did work, and I thank you so much for the info! 

Hopeso....Again I say, it's all about who you prefer for your Doctor, a general surgeon CAN and will do as good of job as a colon surgeon IF he has the skills. These are questions YOU would have to ask him/her. Doing your homework is a great idea. As for your husband, yea, he might have a damaged colon from years of laxative use...a colonoscopy could tell him that. And, not everyone who has total colectomy surgery has a J-pouch, or ileostomy, some people are just connected with a few inches of colon left, causing multiple bowel movements that decress with time. It just depends on the severity, and the medical needs of the individual.  Hope this helps a little!

Posted 10/8/2005 3:20 PM (GMT 0)
Yippee, I was sure it was going to work for you. I have not heard of one person that has said that it doesn't.

I keep a bottle in the bathroom but I also take a small plastic bottle with me in my handbag so that I am never without it.

Sue
Posted 10/9/2005 12:52 AM (GMT 0)

Hopeso,

I do not have a j pouch and I have a rectum.  I have about 6" of large intestine left in me has a "holding tank" per my surgeon.  My surgeon does not to pouches but treats many that do.  It seems they get whats called "pouchitis".  Not sure what it is, but from what my surgeon says, it's not good and it can be very frequent.

For your husband I would advise you read the other site here I frequent "total colectomy".  There are many tests that we had to endure to determine our eligibilty for surgery.  I would suggest your husband go that route if you really say he has a problem.  I would then seek out a doctor that specailizes in gastric disorders including constipation.  He can then set him up with all the tests.

Kelly


Post Edited (KellyIA) : 10/10/2005 7:05:45 AM (GMT-6)

Posted 10/9/2005 3:57 PM (GMT 0)
Hi Kelly :) I am the moderator over at the Ulcerative Colitis forum and I couldn't help but notice that you put in your telephone numbers in your post. Here is the rules regarding this:

16. Do not post offline personal contact information (ie. home address, phone number) and do not ask for personal information, including email addresses, from others

This is for your safety that we recommend this. May I advise you to contact each other via email (if the member has it in their profile) to exchange this information instead of a public forum? Can you please alter your post and remove your telephone numbers since I can't do that on this forum?

Thank you and remember that I only ask this for your safety :)
Posted 10/9/2005 7:56 PM (GMT 0)
     Hi!  First of all, a total colectomy is when the entire colon and the rectum is removed.  You cannot have a total colectomy and still have a little colon left...at least that's what I've been told. 

     I responded before that I felt that a colorectal surgeon is best and I still stand by that suggestion.  A general surgeon is fine for general surgery.  When I was going to need my ileostomy, I wanted a specialist...a doctor that has had additional years of training in doing ostomy surgery.  A general surgeon doesn't have that extra training.  I wanted a doctor that had done many, many ileostomies in the past and was as much of an "expert" at it as they could be.  General surgeons come across the need for ostomy surgeries occassionally but it isn't a day in and day out procedure for them.  Yes, there are some fine general surgeons out there and I wouldn't hesitate having one remove my appendix, but I sure wouldn't want him removing my colon and performing an ileostomy if I had other options.  (I had the best general surgeon in my area literally stand there and wring his hands saying he hoped he didn't have to perform surgery because it would be so difficult!  Honest!   I told my daughter, when he left, to not let him touch me!)   After all, if you needed, lets say, open heart surgery, wouldn't you want the best specialist you could find?  I felt that way about my ostomy surgery. I've done hospital visitations for the United Ostomy Association and have seen a little bit of everything.  

     As I suggested before, be sure and do your homework on the doctor's available to you.  When you know you have the best you can find in the area, your confidence and attitude will be great and you should end up with a quick recovery.  Best wishes and many prayers go your way.  You will make the right decision for yourself!

Sherrine 

Posted 10/9/2005 10:37 PM (GMT 0)
Thanks everyone, I see my general surgeon on wed, and will question him if he gives me time. Ha Ha. He is the type of guy that has a good reputation and the ET nurses like him and say he does a good job. That means a lot to me too. They see the botched up jobs. I had to get a referral to a GI and I thought my primary Dr. would want me to see another one, but she is sending me to the same guy who wouldn't recommend me for surgery last winter. Ugh!
Hopeso
Posted 11/3/2005 3:00 AM (GMT 0)
Hey kids, I did have a good colorectal surgeon do my ileostomy.  Good choice, I think.  Hopeso
Posted 11/3/2005 11:28 AM (GMT 0)
It's nice to hear from you again.

How are you? Are you coping alright with everything?

Sue
Posted 11/3/2005 1:23 PM (GMT 0)

I'm so glad to hear from you again and that you are well on the mend.  Now you can get on with your life! yeah

 

Sherrine

Posted 11/3/2005 5:21 PM (GMT 0)
Hi kids, I am feeling about 100 years old today. They UC is gone and so that is good, but I am so anemic. the iron pills shoot thru, so got some liquid geritol to take. Should be absorbed better. Anyway, this is 10 days post op today. They put a bag on me in the hosp, and then when it sprung a leak I went to an et nurse here by where I live, and she put one on me on monday. It is Thurs, and it is sticking great, but I know eventually I will have to get the job of changing it done. The Et nurse in the hosp used some products for removal of residue glue and preparing the skin for the wafer, but my new et nurse says just forget that stuff and use water to clean the area. Ok but what do I do to get off that caulk stuff? I know little kids do their own bags and I am such a chicken. I want to try the hydrogen peroxide too. But one step at a time. How long should I leave a bag on if it is fine? THanks, Hopeso
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