Finally a Diagnosis

Hi Dianna,

So glad to hear you finally have answers and you will be able to get the help you need.  I too was diagnosed with CI in 7/08 and had a subtotal.  My surgeon left about 2 in. of my colon.  Most surgeries are done lap unless you have had many previous abdominal surgeries.  I had an open surgery and was only in the hospital for 5 days.  At first I had 20+ bms a day but by 6 weeks I was down to 8-10 a day and I was able to go back to work full-time as a first grade teacher.  My job required me to be on my feet for the whole day minus 15 min here or there.  I was very tired but was able to do my job.  The best healing advice I would give is to let your body heal and don't do ANYTHING; NO cleaning, laundry, grocery shopping, cooking, etc.  This is a major surgery and if you want to go back to work within 6 weeks, you need to let others do things for you, the only thing you need to do is walk, walk and walk some more.

As for the low residue diet, my surgeon put me on it from day one and said to stay on it for six weeks but my GI said to remain on it.  I have remained on the diet and it has been almost 2 years and if you read on the total colectomy site, I'm one of the only ones who haven't had ANY complications; I swear by the diet and I highly recommend everyone to stay on it.  I just saw my GI last week and they still say to stay on they diet, just make sure I take a good multi-vit.

I have the website for foods allowed & not allowed that my GI gave me, it's: www.gastroconsultantsqc.com/diet 

I will be more than happy to answer any questions you have at anytime especially what questions you will want to ask your surgeon before you go.  This was the very best thing I have ever done for my body and I have never felt better.  I wish you the same great results that I have had.

Take care,

Judy

 Dianna

  Isnt it nice to finally get a diagnosis?  So what I am wondering is: you have CI why is he not wanting to do a total colectomy?  I have just loved mine except for the first couple of weeks with all the pain but that is normal plus I had a lot more nausia then normal people,,,, but then I am not normal..LOL   Yes, your husband is right doing it Lap instead of the way I had done is a quicker recovery, they cut through all my ab muscles.  I am still tender in the belly button area but no pain for a long time now.

How soon are they going to do the surgery for you?  Gosh, I bet you can't wait to get relief...I am praying for you and all the others daily.  I know the hell everyone goes through with all this stuff and it's just not fair.  We go on for years suffering before anyone will take us serious and do the tests earlier to end our suffering...sometimes it makes no sense to me...

Take care love

Leslie

Hey Leslie, Thank you so much for all of your support. You have been my angel. All your support has keep me strong and not giving up on finally finding my answers (I'm not crazy) as many doctors thought I was. I will be seeing my colon/rectal doctor on 4-23 and I am going to ask for the total colectomy because I don't want to go through this again - recovery and so on.
any way if there are things I should ask my doctor let me know . I welcome any advice and information.
((HUGS)))
Dianna

Hey Leslie, I'm glad went out with your friend, hopefully you had a good time. I know how it is having a friend who forgets to stay in touch with you after you become ill. I was looking at my picture the GI drew for me of my markers. Most of them were in my decending colon, some were in my ascending colon and a few in my sigmoid so I guess that is why he said subtotal instead of a total. When I see my surgeon I am going to ask about having the total because I really don't want to do all this again. And I also need to have him look for adhesions because my GI is sure I have those also.I had a pretty good day. I went to lunch with my sister but as usual I can only eat a few bites of food and then I can't eat anymore. I never finish a full meal. My husband always jokes and says I need to order off the kids menue. So after lunch I came home and had a 4 hour nap, which I needed. My day tomorrow will be cleaning my house and resting. I will talk to you later. Have a good night.

                                                          Dianna

Dianna,

The reason that drs try to leave a few inches of your colon (thus a subtotal) is because even a small amount of your colon will help to controll your bms after your surgery.  There are some people that have uncontrollable bms following surgery so if they can leave a little bit, then they do.

I understand your apprehension but I had all of my markers left (50 of them) after 250 hours (my dr does a different sitz marker test)and I was let to use my laxatives the whole time I was doing the test and some of them were still high in the small intestine.  So I too was apprehensive about leaving some of my colon, but I've had great success so far and even if eventually they have to remove the other couple of inches, I know that things have worked well out very well for awhile.

As for questions to ask:

1) Will it be open or lap?

2) How long will it take?

3) How long will you be in the hospital?

4) Will he put in an NG tube?  If so when? and for how long)

5) Does he use an epidural after surgery for pain control?  What does he use?

6) Will you have any drainage tubes? For about how long?

7) What is he protocol for starting up the bowels?  Does he let them start up on their own; does he give you something to start them like MOM, etc?

8) What will your diet be after surgery and for how long?

9) What are your restrictions after surgery and for how long?

10) What do you have to worry about after surgery; hernias?, blockages?, etc.

11)When can you go back to work?

I'm sure there are many more questions that others will list for you but I thought this is a good list to start with.  Don't be afraid to ask all of these questions; I know it seems like a lot of them but this is a major surgery and it will take your body a very long time to heal.  You have every right to know all of this information before you go into this surgery.  I didn't know anything about my surgery before I went in and didn't really even know about this site which was probably a good thing because I might have been scared to death. But, I was determined to get the surgery, come home and for once follow the 'rules' and not clean and so forth so that I would be able to go back to work by 6 weeks and that determination paid off.

Know matter what the dr decides to do, total or subtotal, look at it as he is the professional and he knows at this point what is best for my body; if you aren't comfortable with it, go to someone else.

I truly wish you the very best and will continue to answer any more questions if I can. You are in my thoughts and prayers,

Judy