Finally a Diagnosis

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scoobydoo
Regular Member


Date Joined Mar 2010
Total Posts : 35
   Posted 4/7/2010 6:03 PM (GMT -6)   
Hey everyone!  I am so happy to say I have finally have  a CI diagnosis. No more wondering what is wrong. I Saw my GI doctor today and he said that I failed the Sitz marker test and that I needed a subtotal colectomy. I see my colon/recal surgeon on 4-23. But I was wondering if I should ask for a total because I really don't want to have it removed totally a few years down the road.  How is recovery after a subtotal colectomy? How long do you stay in the hospital ? Should I have lap or open. My husband thinks I should have lap because of a shorter recovery time and then I can return to work sooner I'm a Dermatology nurse and I am on my feet 9 hours aday and sometimes 3-4 hours in one place for surgeries. What is a low residue diet and does it help? Just needing some guidence and I know this is the place to get it.         Thanks
                 Dianna

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 4/7/2010 8:59 PM (GMT -6)   

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


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 176
   Posted 4/8/2010 6:25 AM (GMT -6)   
Congratulations Dianna! I'm so happy you have your diagnosis and things are moving well toward your surgery. Please keep us updated, will you?

Thanks for sharing your wisdom and experience with us, Judy. You have answered several of my questions.

(((hugs)))

val
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/8/2010 3:50 PM (GMT -6)   
 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
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


scoobydoo
Regular Member


Date Joined Mar 2010
Total Posts : 35
   Posted 4/9/2010 4:00 PM (GMT -6)   
Hey Judy , Thanks so much for the information. I will be ssing the colon/rectal surgeon on 4-23. I am so ready. Along with the CI I think I also have adhesions that are pulling and are painful from my gallbladder surgery site under my ribs on the right and all the way through to my back. I have had several doctor say that I probably do but no one wanted to go in and look(exploratory surgery) When I had my appendectomy 2 years ago I had to have a lot of adhesion removed from my pelvis and around my appendix. Do you think the surgeon will look if I ask him to? Also can you let me know what other questions I should ask? Thanks so much.
                                                                                                     Dianna
 
 
 
 
Val, Thak you so much for responding. It is so nice to talk with other people with our same problem. I see the colon/rectal surgeon on 4-23. I will keep you updated.
                                                                                       Dianna
 
 
 
 

scoobydoo
Regular Member


Date Joined Mar 2010
Total Posts : 35
   Posted 4/9/2010 4:07 PM (GMT -6)   
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

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/10/2010 11:27 AM (GMT -6)   
Dianna,  Hey girl so pretty soon you see the doc, that's great.  Find out why he wanted to do the sub instead of the total.  Ask if they can do it laporscopically instead of me cuz it will speed up your healing time instead of a huge incision.
 
Ask where your markers were located?  Mine were all in my lower right side of the colon so they had not moved ....so if that's the case he needs to take the whole enchalada...It will be so nice for you when its over.
 
I went out and had a drink with my girlfriend last night just one beer...not really a drinker myself.  But it was nice to see my friend, she told me she felt guilty for not calling me in a long time..  So I just accepted it insted of making a big deal of it.  If she was ill I would have been there for her, but I have been sick for so long I think everyone really did not believe that I was really ill...probably thought I was making up excuses not to go out with them...but oh well that's in the past.
 
I am praying very hard for you sweetie, hope today is a better day for you than the day before..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


scoobydoo
Regular Member


Date Joined Mar 2010
Total Posts : 35
   Posted 4/10/2010 8:34 PM (GMT -6)   
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

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/11/2010 1:03 PM (GMT -6)   
   Dianna  Hey girl I am the same I do order off the kids menu if I can  LOL   Its hard your hungry and after a few bites you know not to eat more.  Well at least that is true for me.
That is a good question to ask your doc though, why go through surgery twice if you can avoid it...u go girl....
 
It was fun with my friend and she apologized for not calling and stuff and kind of being mean to me.  I just kind of let it go in one ear and out the other.  When do you see the doc again?  My memory is not good, cuz of my right frontal lobe of my brian is not working right, so I am always asking people what they went through.  Not that I am not interested,  I just really cannot retain stuff and it really bothers me but untill they get it figured out...I am doing the best I can..  Well have to hit the shower so you have a good day..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 4/11/2010 3:46 PM (GMT -6)   

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


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


scoobydoo
Regular Member


Date Joined Mar 2010
Total Posts : 35
   Posted 4/11/2010 7:20 PM (GMT -6)   
Hey Judy, Thanks for all of the good questions to ask my surgeon they will be very useful. I am determined to do whatever I have to do to get the best outcome from surgery because I am just miserable and have had enough of this pain , bloating and misery. Did you have any adhesions removed? Can they look for adhesions while in the surgery? I will ask for sure because I am sure that I have adhesion high up where my gallbladder was removed because I have a constant pain and pulling feeling all the way to my back and I can not get comfortable  when I try to lay down I have to stretch and take ultram for it but it never goes away and the GI said to ask the surgeon about taking a look. Like you said if I am not comfortable with the surgoen I will get another one. Thanks so much for your help. I'm sure I will have more questions later.
                                                        Dianna
 
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