Newb: unsure and suffering.

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Dread_420
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/10/2009 6:41 PM (GMT -7)   
hey everyone this is my first time writing in any forum, so bare with me here. i think iv been suffering from crohn's disease for about 9 years now, since i was about 14, im now 21 and its gotten alot worse in the past 4 years. iv never been diagnosed. im in constant pain in my abdoman, very savage cramping, always feeling like i have to go, i have no energy anymore and i have weighed the same since grade 7 (i think thats when this all started, pretty close anyways) which isnt very much. i weigh 125 and go up and down about ten pounds constantly i guess i should put my height in too, im about 5'8-5'9 (so im pretty underweight). iv had blood in my stool for the last 4 years (since its gotten really bad). im sick every 1-2 months for 1-4 weeks, i could go on and on...i just really dont know whats going on anymore. iv been to many doctors (im in canada, so its free.) and they all want me to go undergo a colonoscopy me being my age (and being as stubborn as i am) refuse to get it done. im not even sure i have it, but it sure seems like i have every symptom, what else could this be? and are there alternatives to colonoscopy? (the doctors wont let me reason, with them.) id really like to figure this out once and for all, but i really dont wanna go thorugh with that (call me stupid). i know thur are non-invasive alternatives and what not, but it seems i have no say in the matter. im extremly stressed out. i just moved to a new city, dont know anyone here, (too sick to go out usually.) and unemployed (too sick to keep a job intact.) and without a lisense or education (since i was sick, i never wanted to be at school) im still living with my parants (...) they do help me out and take me to doctors apts. and stuff but thats about it(wont even take me to a job interview, b/c of how many jobs iv EFFED up) but they are very umm slow i guess you can say, they like to freakout and are very verbal and they are pretty much the main cause of my stress, they dont understand what im going through at all, the only thing i have found to maintain these crazy episodesand since im new to this city its been really hard to find for me(so iv been suffering, and getting sick more often)  but i dont even have any medication for this (since i havnt been diagnosed) so bare withh me.. i jst truley dont know what to do anymore i prolly made this post a complete mess, but i tried. i guess im just looking for advice from ppl what are some alternatives to a colonoscopy and how do i persuade the doctor into letting me try another approach, like i know i have some sort of ibd it dosnt take rocket science for me to be able to tell you im suffering,( or in my case a colonoscopy)  for the past 4 years iv been trying to eat right. (with not much money of my own, and mcdonanalds and potato chip loving parants)  iv done the best i could do with what i had. what IS going to happen if i do get diagnosed with somthing, and where DO you start from there? pretend i know nothing about this condition (cuz i pretty much dont, i just recently found out, and have been reading for the past 3 weeks, (since iv been sick)) thanks to everyone who takes me seriously, cuz no one else is at all. thanks for reading please leave some advice, cuz im lost...
 
*Sorry I have had to edit your post, no discussion of mj is allowed on this forum, please review forum rules*
2. No discussion of medical marijuana use.

Post Edited By Moderator (Nanners) : 11/11/2009 7:36:21 AM (GMT-7)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/10/2009 6:54 PM (GMT -7)   
You should just get a colonoscopy. I understand that it seems like it would be horrible, but really having had one, I can say that it's not bad at all. The bad part really is the prep the day before. They knock you out for the colonoscopy - and to me, I actually woke up feeling pretty good after the colonoscopy. The only other thing is the pill cam, and I suppose you could try asking for that - though I do believe you still need to do the prep even for the pill cam. Really though, I don't think the docs are being unreasonable - they really do need to be able to get those biopsies to get you diagnosed properly.

They really do need to view your insides and get some biopsy samples to diagnose conclusively. There is a blood test - the ASCA and ANCA tests that maybe able to tell if you are prone to Crohn's or UC, but the gold standard is the colonoscopy with biopsies. And as I previously mentioned the pill cam.

The only other thing I can suggest is maybe try the Specific Carbohydrate Diet which may help alleviate symptoms, or maybe trying an elemental diet (which some say is as good as going on steroids).

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Dread_420
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/10/2009 6:57 PM (GMT -7)   
PV said...
You should just get a colonoscopy. I understand that it seems like it would be horrible, but really having had one, I can say that it's not bad at all. The bad part really is the prep the day before. They knock you out for the colonoscopy - and to me, I actually woke up feeling pretty good after the colonoscopy. The only other thing is the pill cam, and I suppose you could try asking for that - though I do believe you still need to do the prep even for the pill cam. Really though, I don't think the docs are being unreasonable - they really do need to be able to get those biopsies to get you diagnosed properly.

They really do need to view your insides and get some biopsy samples to diagnose conclusively. There is a blood test - the ASCA and ANCA tests that maybe able to tell if you are prone to Crohn's or UC, but the gold standard is the colonoscopy with biopsies. And as I previously mentioned the pill cam.

The only other thing I can suggest is maybe try the Specific Carbohydrate Diet which may help alleviate symptoms, or maybe trying an elemental diet (which some say is as good as going on steroids).

PV



thanks for the info and the reasurance.


jamief
Regular Member


Date Joined Feb 2005
Total Posts : 200
   Posted 11/10/2009 6:59 PM (GMT -7)   
Dread, I know how scary a colonscopy can be for the first time, especially when you're younger. I had my first one at 19, was the youngest patient the hospital had for that procedure so far that month lol. But there have been alot younger people who have had this procedure done. I have one a year now, to check up on the disease and to keep an eye on what's going on. At 25, I've kind of gotten used to it. Could always be worse. And it will help the doctors figure out what is going on with you and how they can help you feel better. Speaking from personal experience and not for everyone, I have never had any issues or negative results from having a colonoscopy. Other than waking up feeling groggy and hungry.

There are other procedures as well. Small bowel follow through, different barium xrays, CT scans. Many others that other people would probably be better at describing :). Try not to worry (I know that feels impossible right now, but the more stress you add on the worse you'll feel).

The main thing is getting answers and then once you have them to start thinking about what to do. One step at a time. Everyone is different. I wish you well and hope you'll get diagnosed soon.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 11/10/2009 7:00 PM (GMT -7)   
Why are you so afraid of the colonoscopy? Think about the chance to get diagnosed, and get on medication that makes you feel better and improve the quality of your life. Are you more afraid of the prep or the procedure? The prep is just one bad day of D...you probably have had that on your own! You are given medication so you don't even feel or remember the procedure. Your doc may even be willing to give you a little xanax (anti-anxiety medication) if you are really frightened prior to the procedure. Think about it...you don't deserve to needlessly suffer with all of your symptoms, and it may be dangerous for your health as well!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 11/10/2009 7:01 PM (GMT -7)   
You should just get a colonoscopy, the prep sucks but they knock you out for the procedure itself and it's not so bad. What's worse are barium tests (for me). Anyways, if you just get that over with you could get a diagnosis and some treatment and your quality of life can improve. Have you tried eliminating gluten from your diet? Celiac disease can cause symptoms similar to yours as well
19 y/o female, diagnosed crohns december 2008
currently taking 500 mg pentasa 4x daily


Dread_420
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/10/2009 7:07 PM (GMT -7)   
thanks everyone! this means alot to me... and no iv never heard of celiac disease...ill have to mention that tommorow morning when i go to the doctors again.

AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/10/2009 7:37 PM (GMT -7)   
Your problems could be several different things and a colonoscopy is the best if not the only way to tell the difference. That is why they insist you get one, too many Dr.s just don't take the time to explain it all to you.

If your parents are presenting a problem in the examining room, you could insist that they wait for you in the waiting room while you talk to your Dr.

Good luck! I hope you get diagnosed soon so you can get treatment soon.
AzJohnny
 
I feel a whole lot more the way I do now than I did a little while ago.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/10/2009 8:05 PM (GMT -7)   
I agree with everyone else. The colonoscopy is needed to diagnose the disease. Whatever you have, it is only getting worse and if you  wait too long, some of the damage might not be reversible. 
 
The worst part about the colonoscopy is not the procedure itself, but the prep, which causes diarrhea. But you have diarrhea anyway, so that's really nothing new.
 
You deserve a much better quality of life, and I'm sure you can have it if you just bite the bullet and get the colonoscopy. Then, properly diagnosed and with the right combination of diet and/or meds, your life can turn completely around.   

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/11/2009 7:33 AM (GMT -7)   
There is the pill camera, but you cannot get biosies if they do find something.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/11/2009 7:38 AM (GMT -7)   
The best way to get a diagnosis is thru a colonoscopy. The test itself is not bad as you are under twilight sedation, and don't even realize its going on. The prep is just the worst part. And Navy is right, you need the biopsies to be sure if it Crohns or not. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 11/11/2009 7:49 AM (GMT -7)   
Dread:  the obvious thing from all these answers to you is you must have a colonoscopy.  The unanswered question is what are you afraid of?  Getting naked?  Well the drugs will make you fairly much forget what happened or at least not care.  You will be mostly covered up anyway.  Pain?  It doesn't hurt, again, the drugs work.  Complications?  Worry more about a lightning strike.
 
Look, the longer you wait, the more damage is being done to your insides that will give you more problems, in the future.  MAN-UP and just do it.  Get a little pissed off and do it.  The prep is lousy. Read all you can about it so you do it right and then GO FOR IT.   I suggest you don't get a buzz on for the proceedure.  Frankly this is a grow-up moment for you. 
 
I hope that you will find relief with diagnosis and proper medication
Guy


I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help, especially the youngsters.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.

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