new here,please help

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ReneeB777
Regular Member


Date Joined Jun 2010
Total Posts : 24
   Posted 6/15/2010 8:28 PM (GMT -6)   
hi everyone,I'm renee,I'm new here. :) I can't tell you how happy and relieved I am to have found this website! I've been sick for about 3 years now(I'm 17) and have been to every doctor under the sun. I just feel so scared and alone,and they can't seem to figure out what's wrong with me. the more I read on this site,the more I'm thinking I might have colonic inertia,but I don't know very much about it. (I have chronic constipation,and never have the urge to go without taking miralax)I'm just so frustrated because I had a colonoscopy and they couldn't find anything wrong,so they basically diagnosed me with IBS and put me on the miralax,(1 cap full daily with breakfast)which helped for awhile,but I'm afraid it's starting not to work. (my question is,if it's nerve damage,can they even tell that from a colonoscopy?)My doctor basically told me there was nothing wrong,and I'm so frustrated and scared because it's like everyone thinks this is all in my head,or that I'm making it all up. I've never really had anxiety,I know it has nothing to do with that,but it's been so long that even my family is starting to not believe me just because they can't get a diagnosis. I have so many questions,first I wanted to ask anyone on here about miralax,I've been taking it for quite a while now and I've been reading about some not so good longterm side effects. I was hoping I could ween off slowly and switch to benefiber,but I don't think it will work,but i really don't want to continue taking it if it's harmful or addictive.idk...I'm just so scared and I don't understand what's going on with my body.this website is so great. it helps so much to know i'm not alone. :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/15/2010 10:10 PM (GMT -6)   
im sorry you cant find an answer!
are you thinking of getting an ostomy to help out?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/15/2010 10:12 PM (GMT -6)   
Hi Renee,

Welcome! You've come to the right place. I've not heard anything bad about Miralax. At this point you may just need to increase your dose. The Miralax is not absorbed into your system so is safe to take long term from what I know.

A colonoscopy only looks at the lining of your colon. That test cannot tell if the nerves are working well or not.

The test you need for colonic inertia is called a transit marker test (Sitzmark test). You just take this capsule with all these tiny rings in it. Then every few days you have a plain xray. They can see where the markers are each day. During the whole week of this test you cannot take any laxatives at all. Even if you don't have a bowel movement, which you likely wouldn't, the rings still move along. If at the end of the week, the rings are scattered throughout the whole colon or bunched up in a certain area, then the doc can tell you what your colon problem is.

Please know that you are not alone, though we ALL know what it's like to have people say "It's all in your mind." No actually it's all in your colon and those that say that simply don't get it. So you are more informed than they are.

Hang in. Get that test and let us know how you do. Sincerely, Rosemary

ReneeB777
Regular Member


Date Joined Jun 2010
Total Posts : 24
   Posted 6/16/2010 12:00 AM (GMT -6)   
thank you for your comments and all the info.:) :) idk..it's all so scary to think about. I think I definitely need to have the Sitzmark test that Rosemary mentioned. I've read about it some on here already,but was kinda worried about stopping the miralax in the time it would take to have the test done.and i'm a little bit skeptical I think. (this sounds so gross,I'm sorry) but do you just pass the rings? how do they keep them from getting stuck inside of you? ugghh poor us!! :)
about the ostomy,idk very much about the different kinds or anything,I'm definitely going to try and research it,but from what I do know it sounds like major surgery for sure. At this point,I really desperately want to find some help,and just a diagnosis,but the fear of being told I need surgery is definitely there. I know there are a lot of people on here who have had to go through that,it must be really scary. I guess I'm most afraid of permanently altering my body in any way,even if it does help me. there's always that voice in the back of your head asking what if something goes terribly wrong? so I guess what I'm trying to say is,in a way it would be wonderful to get the diagnosis and the surgery,but I aslo really hope that this isn't it at the same time. (lol,sry about babbling so much.:P)
and about the miralax. that's such a relief to know it's not harmful. I guess I'm uncomfortable taking any medication long term,so maybe that's why I was so worried about it. I really don't want to increase my dosage just because I know I'll just have to keep adding more and more,until eventually it doesn't work at all. I'm such a health freak too,so that part of me really wants to get off of the stuff and just say good riddance! but I suppose that's how we all feel,right?
it's also good to know that they can't tell about your nerves with a colonoscopy. I'm really upset with my doctor for not mentioning this,I don't understand why he wouldn't. maybe it's time to get a new one. anyway,thank you all so much for your info,it really has made me feel better. good luck to you,take care and God bless.:)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/16/2010 4:20 AM (GMT -6)   
Welcome Renee,

I'm glad you found this site, too, and am sorry you're having to deal with digestive issues at such a young age. If you check out the "Total Colectomy Part __" thread within this section, you'll be able to chat with others who are dealing with the same thing you are. They are a super supportive group of gals. It upsets me, too, when doctors don't inform us of things that can help us. If your doctor won't schedule a Sitz Marker test for you, then I would find one who will.

Good luck and God bless,

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/16/2010 7:16 AM (GMT -6)   
I very rarely take Miralax for my chronic constipation. I have had to resort of enemas. Miralax causes more cramping and doesn't make it move out of me - it just turns it a different consistency.

I've had 2 colonocopies - you can see my "list" below. My first was after I had terminal illeitis. My second showed nothing.

Dealing with friends and family is tough. Even though I'm 25 my father keeps offering to call the hospital to get more answers since he can "be stern." I think he realizes calling himself isn't going to get anywhere. A lot of my tests come back normal - though some don't. My family struggles more with not having a "causes" to my problem.

Sorry you have to deal with it at 17.
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 6/16/2010 12:26 PM (GMT -6)   
Renee,  Welcome and yes some of this stuff is really over whelming.  I had the same fear as you.  To do the Sitz Marker test you can't use any kind of laxatives or enemas, stool softners nothing as it would not make your test come out right.  But it will probably hold the answers to what is going on with you, its a great test and its easy.  So everyone here is here to help each other so, glad you found us,  This site helped me save my own life...good luck.
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


ReneeB777
Regular Member


Date Joined Jun 2010
Total Posts : 24
   Posted 6/16/2010 10:05 PM (GMT -6)   
thanks for all your responses guys,it helps so much.:) I'm just getting out of school as it is right now but plan to make a doctor appointment asap when I get home,as I'll be there for the summer. it's so great to be able to talk to all of you guys,it seems like no one really understands,even though I know they really try to. thanks so much for all your kind words.:) I'm so sorry for all of you(and myself too,lol)but this website has really helped me to not be so scared. I'll definitely check out that total colectomy thread,thanks for he heads up. good luck to all of you,your all in my prayers.:) :)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/17/2010 4:55 AM (GMT -6)   
ReneeB777~welcome to the forum!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

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