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Posted 12/31/2006 4:08 AM (GMT 0)
Hi All,

Let me tell you I have enjoyed reading these posts.  I have MS and am on the MS forum.  I have had quite an ordeal which I'm sure all of you can relate to. The MS causes my intestines to not work.  I'm guessing (I haven't had tests) that it would be classified as gastroparesis but I"m not sure.

 

I have had chronic constipation for 3 years, it has gotten progressively worst over the last year.  I have taken every med. under the sun.  This past Wed. I tried lactulose and ended up in the ER due to extreme pain. The xrays showed way too much gas (docs words).  I called my gi doc the next day and when she finally called me back she said "we may have have no choice but to remove your colon".  I am so scared.  She wants to check on having me seen out of state at mayo or somewhere they specialize in severe constipation and know about MS.  I live in Mississippi and evidentally there are none here.

 

Any suggestions would be appreciated. 

Posted 12/31/2006 7:54 AM (GMT 0)

Hi Michelle,

I live in NY and went to the Cleveland Cllinic (Dr Geisler) for laparascopic total colectomy due to colon inertia.

I would highly recommend going there and if I am not mistaken they have a MS center.  Hope this helps.

Posted 1/2/2007 3:54 AM (GMT 0)
Phyllis B,

I too have colonic intertia and am going to have a total colectomy. I go in this wednesday for some final testing on my small intestines. I have not had my appointment with the surgeon yet and haven't been able to ask him/her any questions. I was very interested to read that they did your surgery laparoscopically (not sure if I spelled that right!). Can you tell me a bit about your surgery if you wouldn't mind? I have a jillion questions and am so anxious for my appointment. Any info I can get my hands on before is helpful. Like, What was your incision like? How was it after surgery? Just curious to hear about it from someone like me.

Thanks!
Posted 1/2/2007 4:25 AM (GMT 0)

Hi Bootynoworky,

I have 4 incisions.  (R), (L) and above the belly button and each is less than an inch.  At the bikini line I have a larger scar, about 3-4 inches where they pulled the 5 1/2 feet of colon through.  Postop I had a pain pump.  It is very important to use prior to moving in the first day or so.  The day after surgery, I started to slowly walk the halls and also to have fluids such as jello, broth, water....and each day they advanced it a little more to a bland diet.  Day 6 I finally started to go to the bathroom.  Initially I was going about 20 x a day and very watery but now 6 months later I go about 10X semi formed unless I eat something that bothers me.  I eat everything except salad..that just doesn't agree with me.  I eat vegetables but many times they are not digested.  Sometimes my bottom becomes sore and I use OTC calmaseptine which usually calms things down right away.  I was discharged on the 7th or eighth day. and 2 days later my husband and I made the trip back to NY.  If nothing changes ( I hope I will go fewer times a day) I am so happy that I had the surgery.  Just before they took me to OR I had a little doubt because this is radical but then I just said that I can not go on not going to the bathroom and pain and bloating.  Any questions you may have...ask away...

Phyllis

Posted 1/9/2007 7:11 AM (GMT 0)
What hoops did they make you jump through prior to surgery? I have not yet gotten my surgery date and I pray that I just finished my last set of tests. I have a follow-up thursday to the tests I just did and I get more and more nausiated as the day approaches in anticipation of what they will say. Will I finally get my date? Will there be more tests? Or will it be, "oh let's try one more combo of meds you already tried that failed" as if some miracle would happen and they would work THIS time? I have had the colonic motility test, two colonoscopies, sitz marker study, endoscopy and antroduodenal motility (for small intestine to see if they can handle the surgery), breath hydrogen test and one other colon test I can't remember the name of. Plus, I did biofeedback therapy. What tests did they make you do before they finally let you have a date? I really hope i'm done. After the antroduodenal motility I don't think I can handle much more in my anxious state.
Posted 1/19/2007 3:48 AM (GMT 0)
:-)  I just wanted to give you an update.  I am finally getting somewhere, the new gI doc has ordered the sitz test,defagram, and anal/rectal manometry.  I am having some outpatient surgery next Monday so it will be a couple of weeks before I can do the tests.  He wants to do them before he sees me.  I'll keep you posted.

Thanks!

Posted 1/19/2007 8:19 PM (GMT 0)
hi everyone,

Sorry, I haven't been in touch. I'm in the pitty pool right now.

My surgery, which was on 12/14 was not as successful as I hoped!  I've been struggling with signs since I came home from the hospital that things were not working right, and after my follow up with my surgeon, he informed me that he left 12" of my dead colon instead of the 6" we had discussed. I'm so frustrated,

4 weeks of the same "poop" I've been dealing with for years. confused

I'm back to taking Amitiza, with little relief and  he's recommended MOMs but its not helping.  Do I go back to laxatives????  I am retaining fluid like crazy and I'm miserable...

Sorry... for the whining.... I thought this was over.

I hope everyone else is doing well.

KLH

 

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