new and scared..possible colon removal

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mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 3/16/2006 3:57 PM (GMT -6)   
Hi everyone,  I'm new here and I must say I am so glad to have found this site. You all sound like a wonderful group of people!  You're all nodding your heads " yes we are!!!" right?! Anyways.... I have been very constipated since I was a child. Im 46 now, and like many of you I have tried all the meds etc etc. and things are getting much worse.  I havent had a normal BM without laxatives in  over 25 years. This has completely taken over my life and I cant live like this anymore.  Along with my hysterectomy 3 years ago, I had a foot of my sigmoid colon removed because it was "floppy" and the Dr. thought this would help me.   The Zelnorm worked for a while, but now nothing is working.  I am having a sitz marker test and I can guarantee that every one of those rings will still be there.
 My question is... what will happen if this shows that? I'm kind of confused about a subtotal colectomy and total colectomy and also if you have to have one of those do you have to have an ostomy bag? What is the indication for having one of those verses just connecting the small intestine with the rectum?  I have also heard that if you have to have this done, the "cleaveland clinic" is the place to be. Any thoughts on that? My Dr. is very good but hes one of those that is SO busy that he doesnt spend any time talking to you.  I would appreciate ANY help any of you can give me. At this point my quality of life is pretty much gone, so I'm hoping it can only get better.  Thanks so much!
 

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/17/2006 12:00 AM (GMT -6)   
Hi mom23. Just wanted to pop by & say welcome to HW forum.later...
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/17/2006 8:22 AM (GMT -6)   

Welcome!  I assume that by your description you have colonic inertia?

I opted for j-pouch surgery 5 years ago due to Ulcerative Colitis.  Unlike you, my condition was chronic diarrhea.  I have been thrilled with the results and am so grateful that this was an option to being chronically ill.  Do you live in Ohio?  The Cleveland Clinic is a terrific place to go for this surgery but there are a lot of other fantastic CR surgeons around the country that perform this procedure.  For more information I suggest you visit www.j-pouch.org  There are thousands of j-pouchers registered to that site that can provide you with more information if you are interested in the procedure. 

Because you don't have UC, I imagine it's possible that your small intestine can be connected to your rectum.  For those of us with UC we lose our rectum as well as the colon.  It is also possible to have this surgery without having a temporary ileostomy but no surgeon can guarantee that, it's determined on the operating table.  This surgery has given me my life back, I hope it can do the same for you!

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 3/17/2006 8:36 AM (GMT -6)   
Thanks for your replies... I'm sitting here sooooo scared I dont know what to do.  They believe I have colonic inertia and it will be confirmed with the sitz marker test. I dont live in ohio, I'm actually in Wisconsin, but I have just heard that the Cleveland Clinic was very good.  Thanks everyone!

Avery77
Regular Member


Date Joined Jun 2005
Total Posts : 21
   Posted 3/17/2006 9:39 AM (GMT -6)   

Hi there,

Just a quick note -- I've been a member on the colectomy series of posts for a while -- had a subtotal colectomy for colonic inertia in January of '05 and it has completely changed my life for the better.  I am in Chicago, and my surgeon did his residency at the Cleveland Clinic.  I am biased, but truly believe he is one in a million.  He and his surgical partner work together and they are a great team.  I'm sure you have great medical care in WI, but if you are interested, I can give you his name and info for a referral.  You can e-mail me at averyh05@hotmail.com if that's easier. 

Best,

Avery


mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 3/17/2006 12:10 PM (GMT -6)   
Thank you Avery, I would appreciate his name and contact info. I'm assuming you have no more constipation issues? How long were you in the hospital? I would love to hear more about your experience if you have time. Thanks again.

arleen913
New Member


Date Joined Mar 2006
Total Posts : 3
   Posted 3/20/2006 7:05 PM (GMT -6)   

To Mom 23:

As I am reading your posting, it is a mirror image of what I have gone through.  I am 50, had severe constipation for 25 years.  Two years ago, I finally found a surgeon who didn't think this was, "all in my head" and tell me to eat more fiber!  I had colonic inertia.  I too, could tell them before they even did the xrays that the markers would still be there.  Who knows their body better than us?

I had a total colectomy, where they removed the entire colon.  I had a few problems and had a 17 day stay at the hospital, but all in all, it was OK.

My only struggle now is the reverse--two years later I still have liquid stools about 10-15 times a day.  So, I cannot eat breakfast or lunch and work--as I have to run to the bathroom.  Interestingly enough, I have gained 30 pounds since surgery and can't get it off.

Go figure, constipated for a lifetime and no weight issues--have a total colectomy and gain weight!

My two concerns are the liquid stools after two years and the weight gain.

Anyone else have similar issues?

Arleen913

 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/21/2006 10:08 AM (GMT -6)   

Arleen,

Are you taking a fiber like metamucil or citrucel?  Fiber will add bulk and reduce the liquid output.  I also find that eating foods rich in fiber create more bulk and less liquid.  Fresh fruits are wonderful for adding bulk. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Avery77
Regular Member


Date Joined Jun 2005
Total Posts : 21
   Posted 3/21/2006 3:19 PM (GMT -6)   

Hi Mom23,

I'm happy to give you the name and info for the surgeon here in Chicago -- I'd prefer not to post it on this board.  If you'd like to e-mail me, please feel free.  I was in the hospital for a week (last year) -- and now I feel like a new person.  Everyone's experience is a little bit different, just like our bodies are all a little different.  It takes a while for your body to heal in various ways, and I don't have constipation issues any longer.  It took some time to feel like I was in control of my body after surgery -- I think a lot of people would agree with me on that.  You have good days and bad days, and go through some dietary restrictions and eventually add in different foods, etc.  It is totally worth it.  I wish you luck in your journey and decision-making.  Feel free to contact me for specific questions.

Avery


arleen913
New Member


Date Joined Mar 2006
Total Posts : 3
   Posted 3/21/2006 5:21 PM (GMT -6)   
Sue,

Thanks for the suggestions. I try to eat as much fiber as I can. Honestly, I have tried metamucil a couple of times, but haven't stuck with it. There is just something about it--probably because I had tried it so many times through the years and it didn't help me. I think I need to look into fiber pills or something similar.

I am just amazed there are so many people out there with similar problems. I feel like I was in a bubble for years........and now I see so many people that are going through the same thing.

Towards the end, the only way I was able to get relief was through colonics. I had to have them once a week. Something I really wouldn't wish on anyone, but I would be dead if I didn't have them.

I am happy I had the surgery, it has really freed me. I just need to work on slowing down the liquid stools--as I think I am losing alot of nutrients as well.


Thanks for the note!

Arleen

mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 3/21/2006 5:22 PM (GMT -6)   
Hi Arlene, Thanks for responding.  What kind of problems did you have after your surgery?  17 days seems like a long time! I am also wondering how long you had to have your NG tube in? Did you have to have a colostomy bag for any amount of time? I'm still not clear on how that works. if you have a subtotal colectomy do you have to have a bag for any length of time? Still, that would be better than living like this. Was the transit study test the deciding factor to your surgery, or did you have any other tests done?. Sorry for all the questions, this is all so new to me.

arleen913
New Member


Date Joined Mar 2006
Total Posts : 3
   Posted 3/21/2006 5:37 PM (GMT -6)   
Mom 23,

I had a total colectomy. They completely removed my colon and connected the small intestine to the rectum. No bag. Honestly, that was one of my fears, although a good friend has one and is just fine.

I had some complications. Ended up developing two abcesses, they couldn't tell until they did a cat scan. They inserted two drains to try and get the infection, but it didn't work. I ended up being reopened and they had to clean it all out. I guess it was good that they did, my surgeon said it was worse than he anticipated. Went home with an iv for meds for a few weeks. All in all, you forget those things and are totally thankful to be here today.

Like I said--you sound so much like me it's scarey. I had to have so many tests done--some were so humiliating that I can't believe they even have people go through them. Sphincter muscle tests, etc. The transit test was the final decision though--so if things don't move through they pretty much know there is no other way. I also tried Zelnorm. You name it, I tried it. Get a good surgeon to explain everything to you first.

If you have any other questions--please don't hestiate to ask. I will be happy to share anything to make you feel comfortable.

mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 3/21/2006 7:30 PM (GMT -6)   
Thank you so much... I'm sure I will think of other questions as I go along. I know what you mean.. after all those tests that they put you through.. not much can be more humiliating. Sometimes you just have to laugh. I couldnt stop laughing during my defocography, they must have thought I was completely insane!!! I just kept thinking of a bunch of people in a room coming up with this test.... "and then we'll take this caulk gun... and then they climb up to this toilet...." blah blah blah... Oh well.  once again, thanks for your help.

Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 3/23/2006 9:48 AM (GMT -6)   
 

Post Edited (Angel Baby) : 3/24/2006 8:48:25 AM (GMT-7)


mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 3/23/2006 2:18 PM (GMT -6)   
Angel Baby, Thank you for all your information.  You have really had a rough time!!!!!!!!   I certainly hope yours was the exception not the rule to these surgeries!  What made you start to bleed internally?   You're right about having  a positive attitude going into this, but I am definately not at that point yet. I feel so beaten down and destroyed. Like I just dont have any fight left in me.  I just lost my Dad to Alzheimers after taking care of him for 5 years. Then prior to that, I took care of my mom who had terminal leukemia. It has definately taken a lot out of me and I dont have a lot of faith in Dr's these days. But I continue to get worse and worse.  I will be anxious to get this transit test completed and see what lies ahead for me.  Thanks again

Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 3/23/2006 7:38 PM (GMT -6)   
 

Post Edited (Angel Baby) : 3/24/2006 8:46:04 AM (GMT-7)

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