New and enlightened...

Hi there.. so sorry to hear of your troubles.. that really sucks. 3 weeks between BM is really awful :-( you poor thing.

Which country do you live in and what tests have you already had??

Yes I think a referral to a surgeon could be the next step for you. Surgery can improve things dramatically for you and whilst sounds dramatic, if nothing else is working, you don't have much choice. You don't have to suffer though and there are options which can help you.

There would be a number of surgical options and you need to take some advice from a good surgeon and possibly a second opinion.

I've been there and know how miserable this is.. at the time I didn't think I was 'in pain'.. but just somehow got through and bumbled on. I THOUGHT I was living at about 70% but now I look back I realise it was more like 20%. I WAS in pain and I just didn't realise it. I was horribly bloated, uncomfortable, couldn't really eat much and felt terrible pretty much all the time.

Now I'm back running and training for the London Marathon in April! I couldn't have done that before.

Dont' let anyone tell you that it's 'just' constipation.. it's not. It's a miserable condition and one which can be sorted with the right surgery. Good luck and keep us posted.
Sarah

Welcome, PiratePrincess! I'm sorry that you've had to live with a lazy colon for so long. I had my colon and rectum removed 5 years ago because they were badly diseased with Crohn's, which caused me to have diarrhea 20+ times a day. Even though I had the opposite problem that you have, my life has improved 100% since surgery.

There are several women on here (2BColonFree comes to mind) who have had surgery for lazy colons, colonic inertia, and chronic constipation, and from what I've read, they are very happy with the results. I hope one of them sees this post and can give you advice on how surgery helped them.

I would definitely ask your GI on Monday to refer you to a colorectal surgeon, and see what they have to say.

Take care, and keep us posted!

Cecilia

Welcome Pirate Princess! Like Cecilia, I had the opposite problem, but it's bad either way, I've learned that from this list.

There are some cons to any surgery -- always the possibility of complications, so you would want to talk to your doctor about them. I got an abscess a week after surgery, and I had to go back in the hospital for a few days; there are other things like that that can happen right afterward, but aren't long term issues.

You might be a candidate for several different surgeries, so you'd want to talk to the surgeon about that and also find out more information about the risks of each. If you're having a surgery that connects your small intestine to your rectum or that makes a j pouch and connects to your anus, then often the risk is that it won't work out and you'll need to have a surgery to give you an ostomy bag (that's what I had on the first surgery).

Just from reading this list, it seems that people with colonic inertia sometimes have functional issues in other parts of the digestive system that can still affect them after surgery. You'll want to get tested for these before so you can get the right info about what type of surgery is best for you.

But not to be all negative..... there are risks to not having surgery too, eg. the risk of living your life at 20% as ironmum said..... the surgery has been almost like a rebirth for a lot of us; even though I've had complications, its improved my life in ways I had no longer imagined possible.

hi Pirate and welcome! i'm glad you found this forum, the best place for advice and info! and best bunch of ppl too!

as Cecilia said, i also suffered from CI for about 17 yrs till i finally had surgery. the pros - it totally gave me my life back. the cons - too bad (and i mean tooooo bad!!!) i didn't do it sooner!

my bowels just didn't work and nothing helped anymore. i was miserable and could hardly function as a normal person. i had my colectomy in Aug 16 2009, in which they removed my colon except for the rectum + a tiny bit of sigmoid, and attached my small intestine to the remaining colon. there are lots of women here who had the same surgery for CI and for many of them it worked great w/o needing an ostomy. for me it didn't work, so i now have an ostomy. the ostomy is not a bad thing to live with at all and after suffering for so many yrs, it seems the most beautiful thing in the world to me :)

your next step is meeting with a colorectal surgeon. as someone here said, sometimes other parts of the digestive system can be affected, like a lazy stomach, lazy small intestine and a pelvic floor dysfunction. i, for example, have also a slow small intestine and a pelvic floor dysfunction, so the surgery didn't work and i had to have a bag.

the tests required to diagnose your condition are:
anorectal manometry
colonic transit time test
defecography
barium enema

in addition, you have to also have tests for stomach and small intestine transit time. i never had those tests and they are very important.

after you've had all the listed tests, your surgeon and you will have a full picture of your condition and will be able to know what should be done. actually, with CI it's always best to remove the colon - no point what so ever to leave a nonfunctional organ in side. mine got SO twisted - it streched more and more over the yrs and become much longer than normal. actually that what happened to all the women here with CI.

i highly recommend you read the "total colectomy threads":

https://www.healingwell.com/community/default.aspx?f=33&m=276914

this link is for part 3. it goes up to 30 something. in these posts you'll be able to learn A LOT (!) about the surgery for CI and it's outcome. the best info i can give you, is reffering you to these posts, cuz it also gives you a better picture how it worked for a wide range of ppl.

if you have any specific questions, pls feel free to ask and i'll try to help as much as i can.

best of luck to you!!! and i hope relief is coming for you soon!!!

Hey Pirate! 

My name is Kyle, I am so sorry that you have been dealing with constipation problems.  Yes, like Hodaya said, read the total colectomy threads they contain a great deal of information that is extremely helpful.

I had suffered with constipation problems all my life, ever since I was young baby, and I am only 27.  I would go maybe a couple times a month.  If it was more, the stools were very hard, and still, nothing came out much.  Basically, it would get to the point at times that I would just explode till it came out, and I felt full, bloated, and I was in pain all the time.

A few years ago, I started noticing that I had this pain in my left abdomen all the time.  I would get nausea when I wanted to eat; I had trouble passing gas.  Plus, I would start this excessive burping whenever I ate.  It was awful! 

My mom was like, maybe if you fix some of your constipation problems; some of these things will get better.  I was hesistant about taking laxatives because they always seemed ineffective.  Again, I tried more fiber, miralax, suppoistories, enemas, milk of magnesia; you name it, I tried it!  I just resorted to taking 7-8 dulcolax and combining it with miralax at times to go to the bathroom.  Then, the next day I would be in pain wondering if my laxatives where going to work or WORK!  Then, I still didn't feel better; my left abdomen just hurt, and I made these weird gurgle noises.  I was fed up with it!

However, I want to caution you to make sure to get every single test done prior to whatever you decide to do!  I have been diagnosed in pieces, which has not helped my condition.  As Hodaya, mentioned; yes the tests you need done are:

Colon transit test

Defecography

Anorectal manometry

Upper GI (small bowel follow-through; need to make sure you small intestine is okay!)

Gastric emptying test (make sure the motility in your stomach is okay, too!)

In my condition, like I said, I have been diagnosed in pieces.  First, it was just IBS, then colon inertia, and now, gastroparesis.  First, since I was complaining about pain in my left abdomen and excess gas there, even after I went to the bathroom.  I had a left hemicolectomy this past February; didn't work.  Then, I finally went to a colo-rectal surgeon, and I had my total colectomy in June.  Today, I still take milk of magnesia from time-to-time, and lay in certain positions to get out the gas, which is horrible.  I do not have a bag, but I do not know if I still suffer from problems at times because 2 tests I didn't have done prior to my total colectomy were the anorectal manometry (I do have some paradoxical contractions!), and then in August I finally had my gastric emptying test.  I still felt nausea, sick, bloated so bad, and my condition just seemd to get worse!  The pain on my left abdomen was due to my slow motility in my stomach, 509 minutes.  I barely eat anything now-a-days, which might explain for some of the problems and excess gas from food and liquids sitting my stomch forever!!!!! 

Last week, I met with a doctor in Chicago (I live in southern IL), and we talked about putting a gastric pacemaker on me, and I so ready to move on with my life!  I am tired of being in pain!

I wish you the best of luck, and make sure to get a comprehensive profile of tests completed!  =)

Kyle

2009 - Dx with IBS

2010- Dx with Colon inertia

Feb. 2011 - Left hemicolectomy

June 2011 - Total colectomy

August 2011 - Dx with Gastroparesis

Dec. 2011 - Met with doctor; might be getting gastric pacemaker

 

Thank you everyone for posting!! I have copy and pasted a lot of this information and printed it! I moved my Dr appointment to tomorrow, I can't wait until Monday, so I'm going to go through things I printed and highlight specific topic I want to bring up. One of the doctors I work for was pressing on my stomach today seeing where it hurt (He had no patients, I think he was bored..) and said I should have the GI order me a CT scan. So, we'll see what happens tomorrow. I'll let you all know!!

Thank you Kyle for all of that information, I hope things work out for you and I will definitely mention those tests you suggested!

2b colon free thank you also for the information and the link!! I am about to go look at that thread right now :)

Thanks everyone in general... Such a friendly community!

Wishing you all the best with your appointment tomorrow, and please keep us posted on how things go!

Cece

Wow, that's so encouraging! I'm glad you spoke up and are moving forward with getting some tests done. Since I had chronic diarrhea, I'm no help on how to get cleaned out for the colonoscopy. Just do what you can and keep the doctor posted. How nice of him to give you his cell number! My GI gave me hers, too, and that was such a comfort to me, because I usually had problems over the weekend, especially holiday weekends (you know, Murphy's Law!)

Feel free to keep us posted on how the prep's going. We talk poo 24/7 here!

Cece

Hodaya, thanks for sharing your experience with her. My heart goes out to you both for having to go through this.

Please don't feel ridiculous. You're just doing the same prep that people with healthy colons do. If it doesn't work for you, then it's just showing the doctors that there's something going on that needs to be addressed.

Hey Pirate, just thinking of you; how did the prep go, colonoscopy?  I hope everything went through okay! 

Kyle

2009 - Dx with IBS

2010- Dx with Colon inertia

Feb. 2011 - Left hemicolectomy

June 2011 - Total colectomy

August 2011 - Dx with Gastroparesis

Dec. 2011 - Met with doctor; might be getting gastric pacemaker

Tomorrow is colonoscopy day, exciting I know, but the medicine isn't working!!! It's 10:30pm and I have yet to have a bm!! This sucks! How needed is this colonoscopy?! Rectal bleeding isn't THAT important right? Lol ugh this sucks...