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amcgleno
New Member


Date Joined Feb 2009
Total Posts : 16
   Posted 2/9/2009 1:21 AM (GMT -6)   
Hi everybody.

My name is Amanda, I just turned 24 years old last week, I reside in washington state.

I have been reading everybodies stories and thought id share mine, maybe get some feed back if I'm doing things right.

I started having constipation problems at age 18. My reg dr put me on prozac for depression, and sure enough I was able to have bowel movements then... didn't last long, and I found myself stuck in the same rut. I was referred from gi doc to gi doc, apparently I was too complex for them....finally was given a doctor who knew what he was doing. I have been through all the tests possible...I've had them all since 2007...can't remember the names of most.

Colonosopy/endo.....no blockages

Got to eat a radioactive egg salad sandwich. (Was so horrible I bargained with the nurse to let me only eat half and he let me. Hahaha)

Got to be lucky enough to drink a ton of barium, get xrays to see how long it took from my stomach to my large intestine.... after 5 hours, I wasn't even done yet....I left anyways...that barium ended up hardening in my intestines, 14 days later and 5 boxes of laxatives....I decided to get a colonic. Broke it down enough 2 allow my lax to work.

The infamous marker test (was horrible!).....all markers hung up in my large intestine as predicted.

Had a ct scan, more barium.

Was given miralax, amitiza, even zelnorm. No luck at all. Senakot doesn't work. Only exlax. I'm up to 26 pills everytime I need a bm.

After all these tests, my doctor said I had colonic inertia. He was trying to make sure I did not have CIP.

Right after that....he retired....wonderful..... I ended up with the only gi doc left and its been a year and a half since I've started seeing her and it seems I'm getting nowhere.

She asks me numerous times to try to take 2 laxatives a day everyday and that will make my bowels move. For all you people who have to take or have taken laxatives, you know taking less than what will work will put you in agonizing pain. Who has time for that? Or even taking stimulant laxatives everyday???

She persrbied me zoloft and trazadone feb to see if that would make my colon work....nope.

I then asked for surgery. She gave me the run down about how surgery isn't a good option since its permanent. (Well duh lol)

I then was diagnosed with bi polar disorder july 2008. My gi dr said she would not let me move forward until I tried medication that worked, and to see if that would make my bowels work too.


I ended up getting diagnosed with adhd, severe depression with anxiety 2 months later ...I was misdiagnosed ...mother had terminal cancer.....lasted 10months..she had passed away sept 3rd, most likely the emotions from that had a big impact on the misdiagnosis.

So finally my gi doctor allows me to see a surgeon for a opinion. They put me on ambien, zoloft, adderall. She wanted to see me after about 8 weeks to see if the meds my therapist gave me would make my intestines work. (See a pattern?)

Ofcourse they didn't....I see her again....she decides she wants me to do another marker test....after 5 days I took laxatives...they barely worked...so I took the 2nd xray. I told my doctor that I took lax and she kept saying "the markers are gone, you can go to the bathroom"....aaaaarrrggghhhhhh

So I finally got another marker test....they made me physically come in so they could see me take the marker pill. Gave me only one xray sheet, saying if the markers don't pass why day 5, they'll give one at day 7. I said they won't pass....she replies "you don't know that"..yes I do......

They didn't pass.

THEN she set me up for a anal rectal managometry ? She said this is the last test and we will discuss out options.

I did this test 2 weeks ago, they test your nerves in your rectum to see if they will work properly. I got the test results back, it works fine. I told the surgeon who did my test the run around I've been getting from my dr, and he said he was going to send her a note saying a sub total colectomy is next.

I am supposed to see her tuesday to discuss what's next, but apparently she fell and is out for a month. So I made an appointment with one of the new gis there for tomorrow. I hope she can go through all my stuff and give me the green light. Cos my regular gi doctor has issues with colectomies.....she argues with me that daily stimulant lax will work. But she doesn't realize that I'm tired of the pain, bloating, vomiting, nausea all this causes me. I want some relief so bad.

Does anyone have any tips for me??

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/9/2009 1:40 AM (GMT -6)   
It sounds like time you got a new GI Dr. any way! Time to get another opinion.
Seriously, It's not like any one WANTS to have to go through all you've been through!
if another Dr. doesn't think surgery is right yet, then maybe they'll have other ideas for therapy. Something that WORKS!
I know what it's like to be turfed to other Dr.'s b/c you are a "difficult case to manage." Frustrating. Makes you bite your fingernails.
I had u/c, so my tale/tail is different (yes, pun intended) tongue but I think when you are at the point where you are begging the Dr.'s to Let you have surgery, it's time. You're the boss of your body. Ultimately, you're the one suffering and you're the one who knows your limits.

Good Luck with everything.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/9/2009 6:36 AM (GMT -6)   
Is there a teaching hospital in your area? You might fair better if you can get to one...if the new GI doesn't do the right thing!
 
btw...welcome to the forum!

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 2/9/2009 7:27 AM (GMT -6)   
Hi Amanda,

It sound like your GI doctor and therapist are working together in someway that is bad for you. zoloft and trazadone are psychiatric medications and I do not see the purpose in prescribing those types of meds for constiaption, when in fact those medications cause constipation and if you already have constipation, those meds would definately make it worse. I was on psych meds from when I was 20-29, when I had my surgery. I had a total colectomy, where they attached my illium to my rectum. I had slow transit constipation from birth and when I was on those meds, the constipation was extremley alot worse. Back in Jan. 2008, I was on so many pysch meds,(seroquel, lexapro, trileptal), that they enabled the constipation so bad, that my colon died and in Aug 2008, I had my surgery. I am not longer on medications because I did not need them in the first place, and I am highly sensative to them medically and physically. Well, I hope this helps you alot and maybe you should probably see another therapist as well as a new GI, since it does not make sense that a therapist is not a specialist in the digestive system and the Gi maybe taking advice from the therapist, who's profession has nothing to do with the digestive system. It is nice meeting you and welcome to the group. If you have any questions, I am willing to answer. Good luck with everything.

Maya

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/9/2009 4:40 PM (GMT -6)   
hi Amanda,
you can learn a lot about colonic inertia from reading "total colectomy part 1-21". just google "total colectomy part 3" and you'll get exactly it! (part 1 and 2 are hard to find, cause were titles differntly. there's lots of information there.

anyway, it's so unfortunate you can't find a dr that'll listen to you. can you go to cleveland clinic? i've heard they're one of the best and very experienced with colonic inertia too.

good luck to you and keep us posted.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/9/2009 7:34 PM (GMT -6)   
amc, my situation is different b/c i had crohns, so constipation definitely is not my issue but just wanted to chime n on a few things

#1 at the end of the day it is YOUR body, a theory i had to get used to, my surgeon was the opposite, he wanted me to get the surgery and i put it off for a year. ended up making myself worse, and even now he says that even tho he knows it wont do me any good, if i say the word he'll rehook me, even tho i may need it again sooner rather than later

which leasds me to the second point

i dont know if u have the option with CI but, my ileo is temporary right now. so couldnt they let u get an ileo first and see if u get relief and then decide if it should b permanent?

third
as ohio said, you chose ur doc, you can always get a second third fourth fifth opinion if you want. in situations like ours, docs need to understand that we know our bodies best, and if a doctor is trying to convince you of what you are and arent going thru, thats a red flag

hope u find relief, and welcome to hw!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/10/2009 7:08 PM (GMT -6)   
I too have Crohn's Disease, but wanted to stop by to welcome you to HW.com and hope to hear from you in the future, hopefully with some good news. I agree with getting additional opinions until you find someone that is willing to really "LISTEN" to You. That is so important.

Best of luck to you and do stay in touch with us,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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