Which Dr. does best

Hopeso · October 3, 2005, 1:16pm

Do you think a general surgeon can do a good job with a total colectomy or would a colorectal surgeon do better?

Hopeso · October 3, 2005, 1:21pm

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

hopeso

Hopeso · October 3, 2005, 2:55pm

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

bag_lady · October 4, 2005, 3:49pm

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

Hopeso · October 4, 2005, 6:38pm

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

bag_lady · October 4, 2005, 7:57pm

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

gardespatient · October 5, 2005, 4:22am

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!

^Tammy

gardespatient · October 5, 2005, 4:26am

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!

^Tammy

bag_lady · October 5, 2005, 11:53am

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.

gardespatient · October 5, 2005, 5:46pm

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!!!!

^Tammy

bag_lady · October 6, 2005, 11:03am

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

KellyIA · October 6, 2005, 1:35pm

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

KellyIA · October 9, 2005, 12:52am

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

Red_34 · October 9, 2005, 3:57pm

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 :)

~Sherry~
Left sided Ulcerative Colitis diagnosed '92
Colazal 750mgs x 9 daily
Currently in remission(since Aug '04)
Make every good day count!

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Sherrine · October 9, 2005, 7:56pm

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.