New here; CI and subtotal colectomy is recommended

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RottieMom
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 3/6/2010 10:18 PM (GMT -6)   
Hi, I'm new here, and hope I can find some much-needed information.

I am a 45 year old female, and live an active life. I've had problems with constipation for years, it was always considered IBS-C. ((I also have an extremely redundant sigmoid colon, recently diagnosed, which was never noted on any colonoscopies I've had.)) To deal with this, I've used stool softeners, Miralax, antispasmodics, and Amitiza. The Amitiza helped pretty well, then stopped working. GI dr. agrees that we have exhausted all medication management options.

I've recently had a number of tests (CT, BE, Sitz marker transit test) which indicate I have severe colonic inertia. My GI dr. is recommending a sub-total colectomy. Initially, we talked about removing the redundant sigmoid, and now we're looking at nearly the whole colon to be removed. So that is a new situation for me, but hopefully seems to be a positive option to allow me to live comfortably.

I don't even know what questions to ask! GI dr. is not sure that it can be done laparoscopically, due to the size of what has to be removed. GI dr. has discussed the proposed surgery with me, and I understand what it entails. But I need details!

So, what I don't know is what real people experience with this surgery. So that's why I'm here! :-)

What is the surgery and immediate aftercare like? I know that lap vs. open is very different. What is the short term recovery like? When can I resume activity? How long will it take to feel well? What about diet? What about any 'been there, done that' tips you can offer?

Thanks, I appreciate any information!

Post Edited (RottieMom) : 3/6/2010 9:29:03 PM (GMT-7)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/7/2010 5:47 AM (GMT -6)   
RottieMom~welcome to the forum! You should be able to get answers to all your questions here:)

There is an entire thread on 'Total Colectomy" and there are many parts to it! I think if you google 'healing well forum total colectomy' you will find all but one or two of them.

Most docs will try lapro but will let you know that, if necessary, they will have to use a mid-line to finish.

We are all different when it comes to recovery and pain management, but you should expect around 6 weeks before you go back to work, lift, housework and any kind of exercise. Lapro may reduce that time, tho. I needed help the first week or so at home, but after that I could get my own meals, shower and walk without wanting someone near by. I always say that any MAJOR surgery could take up to a full year for your body to get back 'to normal'...I always feel better a month or so out and go back to my usual activities, but my body will quietly remind me if I over do something. You will probably be restricted on your diet during the 6 weeks, until the swelling goes down, then you can start introducing more after that.

The best 'tip' anyone could give you is to WALK and when you think you are done WALK some more!!! Your nurses should get you up and walking the morning after (or even that night if it was lapro) surgery...it wakes things up and is overall great for your recovery.

Keep asking your questions!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


RottieMom
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 3/7/2010 12:02 PM (GMT -6)   
Thanks so much for sharing your experiences. I've been reading the "Total Colectomy" thread, and will spend some more time to gather information. I do still have questions! :-)

I think I'm a good candidate for the surgery, since we've pretty much exhausted every medical option. I'm very grateful that I was referred to this particular GI last summer. He initially thought my constipation was due to some of the meds I have to take. I've had 'IBS-C' for about 10 years now, and it was only THIS GI who ordered the CT that got the diagnosis rolling So for that, I am grateful.

In addition to the CI, I also have a (genetic) immune deficiency, and I rely on weekly infusions of immunoglobulins (antibodies) to stay healthy. I know I am double-lucky, because it was my ENT (who was treating me for chronic sinus infections, and performed surgery) who ordered the tests to evaluate my immune system. 20 years of illness, with doctors just wanting to throw antibiotics at my recurrent sinus infections, and then I found THIS one who was looking for the root cause. And found it. In both situations, getting a diagnosis has been a relief, to know there IS a reason that I've had these problems.

More questions, which I suppose are in the FAQ category:

Is there anything you found helpful to prepare yourself, and your body, for surgery? Things to do, things to avoid?

Is the prep for surgery like the prep for a colonoscopy?

Did your tummy feel SORE, like being punched, or was it PAIN? I've had two other surgeries via lap, and had soreness along with some pain after them. I'm a fan of controlling pain, not trying to tough things out. I have a much better appreciation for my body and what it has to go through in the last few years.

Pain meds: they are notorious for causing constipation. But if (most of) the colon is gone, is this a problem?

Other meds and vitamins: I think I read on here that some meds are absorbed in the colon. I have a pretty long list of meds, so how do I know which ones I might need to take in a different form?

Post-surgery: How soon do you get to ingest anything, including fluids? And how do you know when your GI system has resumed working after surgery? Did you have any sort of TPN or other assisted feeding? Did you lose weight?

Women only: is it feasible to have a partial hysterectomy at the same time (leaving ovaries)? Or is it just too much to do at once?

What should I do to prepare my husband for the short- to mid-term recovery? What supplies might I need once I get home? Any websites or organizations that I can read about this?

Thanks so much for your input. I'm on a couple of other forums/discussions for my other health issues, and I know how supportive and calming it feels to have someone fill in all these blanks, with their own experiences. The 'not knowing' is hard for me, since I tend to do a lot of research to learn about such things.

BrightonBelle
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/14/2010 1:57 AM (GMT -6)   
Hi, I had a subtotal colectomy to remove 95% of my large bowel 4 weeks ago. I had suffered for 15 years with constipation and a bowel which was slowly "dying" off and not working. I wish that I had been more prepared for the op !
I have had previous ops such as a hysterectomy and thought that this would be a similar recovery.
Things didnt start too well as I came round from surgery minus any pain killers....it wasnt a good time to have no reaction to morphine except for the feeling of my skin "crawling"......I completely freaked out when my first BM's filled the pan with blood....I just wish I had been warned as I thought that something awful had happened.
I left the hospital after 5 days as I have a very supportive partner who was able to care for me just as well as the nurses. I have pushed myself to walk everyday but find that if I walk a bit too far then I get a "pinching" sensation either side of my navel. I was told by my consultant to eat/dink whatever I want but have been too scared to try anything more that fish/bread/yogurt and orange squash !
Things are getting easier but I still never know when I will need the toilet and live in constant fear that my constipation will come back.I still feel as though I have been kicked in the tummy by a horse !
I commute to work everyday at 0430am on a 3hr round driving trip and am concerned that I will no longer be able to manage this.
Can you tell me if the above is "normal" or feel free to tell me to stop being a wimp !!
 
Brightonbelle rolleyes

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/14/2010 8:10 AM (GMT -6)   
Brightonbelle, come to total colectomy part 34...this is where we all post with colonic inertia and many have already had total colectomies. Also, if you do a search, you can go from total colectomy part 1 to total colectomy part 34. There is a wealth of info in all of those posts. I have colonic inertia and an obstructive defecation syndrome and am having surgery for this on June 21st.
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