i can't live like this

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Airik
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/30/2010 7:07 AM (GMT -7)   
I am 31 yrs old i have been diagnosed with crohn's disease for a little over 2 yrs and i have dealt with the harsh symptoms for over 4 for as far as i know.I am on alot of med's along with my predisone steroids anyway i still have the symptoms i'm not gettting any better and i hear the surgery helps alot.I wan't it.I can't live like this.I dont have the tolerance or patience my Dr. keeps giving me more med's instead of refering me to a surgeon .is there a way i can do it on my own or should i try a new dr.?

MAG102886
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Date Joined Jul 2008
Total Posts : 674
   Posted 3/30/2010 7:21 AM (GMT -7)   
If your doctor is not listening to you then it's time to find a new one. 
 
I've been in your situation, and felt like I couldn't take it anymore, but things do get better. Hang in there.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/30/2010 7:24 AM (GMT -7)   
If you don't like your dr and you feel like he isn't providing you with the appropriate treatment that fits YOU as a person, then you should of course switch doctors!  Everyone is different and requires various levels of treatment and options.  I, for example, would refuse surgery except as a very last resort.  I also don't like being on very strong medicine and am working toward a more holistic approach to control my symptoms through my diet and lifestyle and supplements, etc etc.  But there are other people who would prefer a more traditional/cutting edge medicine approach to their treatment and that is the wonderful thing about where we live and the resources available to us - YOU HAVE THE OPTION SINCE IT'S YOUR BODY!! :)  I would start looking for another dr TODAY, you sound like you need a new situation!   
 
In what area do you live?  Maybe there are people here who can help refer you to a good GI in your area.
 
Good luck!
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 3/30/2010 7:25 AM (GMT -7)   
I would also try a new doctor. Unfortunately with this disease there are no quick fixes. It takes at least 3 months for most crohns meds to reach a therapudic level in your body.
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…


elexis
Regular Member


Date Joined Feb 2003
Total Posts : 101
   Posted 3/30/2010 7:29 AM (GMT -7)   
Hello....Other then prednisone what other meds are you taking? Have u tried Remicade, humira and/or Cimzia? This disease is exhausting, frightning and plain ole' Pain the Butt....At this point most Doctors don't preform surgery unless there is scar tissue build up or some kind of obstruction that meds can no longer help with....Sometimes surgery is not the ONLY answer...I say this becasue I thought this myself and low and behold it's a year and 4 months and the crohn's is back in business were my surgical site is....Everyone is different but I have heard sucess stroies and horror stories, but all in all usually Drs try to get you on a TNF blocker....along w/ maintenance meds....
Dx. w/ Crohn's Disease May 2000
Meds: Asacol 400MG, Imuran 50mg, RemicadeHumira
Small Bowel Resection November 2008

Dx w/ Hypothyroid 2001
Medication: Levoxyl 88MCG
Factor Five Leiden
 
Starting my First Clinical Trial of Vedolizumab (MLN0002)
First dose is April 2, 2010 (Hoping for a miracle)


Airik
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/30/2010 7:35 AM (GMT -7)   
My meds just increase and like i said i'm not getting or feeling better im through the ER and kepte in the hospital 1-2 times at least a month.it hurts so bad with my cramping and i haven't had a solid BM in over 2 years .my potasium dropped so low when i was sleeping i woke in pain and i was paralized literally last sept. i was in the hospital on emergency potassium bags for almost 3 weeks before i could walk again.i was paralized from the neck down when i awoke.anyway meds are not working for me i keep getting worse.I have a history of MRSA from a spider bite a few years ago im wondering if i can have a weak immunity from it and or i grow immune to the meds.anyone have the opperation?does it help that much?im really desperate.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/30/2010 7:41 AM (GMT -7)   
Hey, and welcome to healing well. Sorry you are feeling so poorly. As another poster mentioned, it takes time for the crohn's meds to kick in and make a difference. BTW, what meds are you on, and when did you start those?

I agree you need to be able to discuss your concerns with your doc, and he needs to tell you what you should expect on these meds, ie. what level of relief and by when; and the course of action he has in mind for you if the meds you are on currently don't work. I think that if your doc just brushes you off after prescribing meds, that perhaps you need to find a different doc. I think for crohn's patients, because the course of the disease is so individual, I like doctors who take the time to talk about his/her plan of action.

This is what my husband's GI does. He tells us this is what we're going to try, and hopefully within the next week you'll see some improvement, if not we'll go on to try this other thing, etc. So, I think you should have a conversation with your doc and see if he'll be willing to work with you to give you more of a sense of his plan. I would advice against being in a hurry for surgery - surgery is no guarantee with crohn's disease. The disease can come right back, and then you're back to where you are right now, except missing some bowel. So, do think about exhausting all medical options prior to seeking surgery - I think surgery for crohn's is when nothing else works, IMO. But of course, it is your body, and your choice, but just be sure to weigh the options and the pros and cons of each before seeking surgery.

Hope you get some relief soon.

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Airik
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/30/2010 7:41 AM (GMT -7)   
my other meds that i can think of of the top off my head are phenegran 25 mg nexium 40mg xannax 1 mg <tid> potassium k/h dur 20 mg every 1 to 4 bms, celexa 40 mg.s Prednesone, and theres mlre i am givin my meds in sun-sat am/pm containers by my girlfriend she's an RN an i dont have a good memory i just know how i feel and im on alot of meds i cant further try to pronounce let alone spell sorry.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/30/2010 7:54 AM (GMT -7)   
It doesn't sound like you've given the anti-tnf agents like Remicade/Humira/Cimzia (these are usually given as an infusion or an injection periodically) a try. My husband was facing surgery for certain, and remicade was his last hope. Remicade got him out of the hospital and living a normal life for the past 2 years. I think it is worth discussing the anti-tnf agents with your doc prior to going for surgery.

Perhaps you can get your girlfriend to post the meds you are on currently. Other than prednisone, none of the meds you listed address the underlying inflammation of crohn's disease, and prednisone is a steroid and should not be used for long term treatment. But there are other meds in the mesalamine category (such as Ascaol, Pentasa, Canasa, Colazal), immuno suppressants (imuran, 6-mp and MTX), and anti-tnf agents (remicade, humira, cimzia) that are used in the treatment of crohn's disease. In addition to those, there is a less systemically absorbed steroid called Entocort that is used when the inflammation is in the small intestine.

Please consult your doc, or find another doc who can help you get your disease under control with medication. It doesn't sound like you've exhausted all the available medical options. What I've discovered with this disease is that you have to be educated about this disease and take control of your treatment options, because noone is going to care for your health as much as you can, and the best way to prevent mistakes and mistreatment, is to know enough about this disease and treatment options to be able to discern when you are not getting proper care. Also, do you know where the disease is - large intestine, small intestine, etc?

Also, another thing you can try is an enteral diet - a liquid diet to give you easily absorbable nutrition and to give your bowels a break. My husband likes Ensure - when he gets sick, he switches to pretty much living on ensure. It may help control symptoms and give you nutrition to survive.

I hope you get the help you need soon and find some relief.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/30/2010 7:57 AM (GMT -7)   
Then I am actually not seeing any long term crohns meds: such as the sulfa meds, 6-MP, Immuran, MTX (pills or injectibles), Remi, Humira, cimzia, etc.
If you are actually on pills, it might be that you are shoot them thru your digestive system before they can actually absorb.
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…


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/30/2010 8:00 AM (GMT -7)   
well said PV!
"address the underlying inflammation of crohn's disease, and prednisone is a steroid and should not be used for long term treatment. But there are other meds in the mesalamine category (such as Ascaol, Pentasa, Canasa, Colazal), immuno suppressants (imuran, 6-mp and MTX), and anti-tnf agents (remicade, humira, cimzia) that are used in the treatment of crohn's disease. In addition to those, there is a less systemically absorbed steroid called Entocort that is used when the inflammation is in the small intestine."
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…


Airik
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/30/2010 8:15 AM (GMT -7)   
i go on and off the prednisone and i know i have to take it in a sequence that shortens to the end the other meds that u guys said do sound familur i am trying to learn about the disease as much as i can but its hard to remember my meds when my Dr. ups them switches em .I don't feel like she's treated this alot before she is just my family dr. i have another that sees me in the hospital that she sends in.and a GA. and i agree i think i may be passing the meds to fast like i said i havent had a solid BM in over 2 yearsi have literly had to stay on the toilete all day a few times.im sure u guys know what i mean.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/30/2010 8:59 AM (GMT -7)   
You can get pill managers with alarmed timers on them, or you can set the alarms on your watch for them.

I am not sure if I understood you correctly so I need to ask if you are seeing a gastroentrologist? A doctor who specializes in disorders of the digestive tract, there are even those that specialize futher into IBD specialists.

Let's face it it is time that you empower yourself to know what exact medications you are on and in what amount. As with any chronic illness it is recommended that you keep a list of your medications in your wallet, along with any allergies. I keep a laminated copy in my wallet, but when I am on pred I have a couple of cards that I have to write on as I go down in dosage.
No one is saying go off pred cold turkey, if you do it could be very bad for you. But pred is used generally as a short term medication in crohns, because it has such negative long term side effects.
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…


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2044
   Posted 3/30/2010 9:42 AM (GMT -7)   
I'm sorry you're having such a rough time. I can't tell you exactly how I went about my decision for surgery, but I just knew I had to do something.

If you're not seeing a gastroenterologist, you need to get a referall to one and go from there. These medications are pretty much out of a family doctor's ability to oversee safely, as many have to be monitored with great care.
50 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.  Severe depression past two years.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 3/30/2010 5:33 PM (GMT -7)   
There are so many drugs out there for you that may help you a lot. Surgery really should be the last resort. As with
all surgeries they come with risks, so I would talk to your doctor about some different meds.

I wish you lots of luck...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/30/2010 6:49 PM (GMT -7)   
I would consider getting a second opinion from another GI if I were you. And yes, usually you can see a surgeon on your own, but they'll want your records from your GI probably. It is YOUR body and you should do what YOU want to do--if that is surgery, so be it! Just make sure you are educated about all your options.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 20mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Toodles
Regular Member


Date Joined Oct 2006
Total Posts : 405
   Posted 3/30/2010 7:16 PM (GMT -7)   
Get a new doctor, it's the key to successful treatment/management of your disease.
Good Luck!

LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 3/31/2010 10:22 AM (GMT -7)   
You have to go to a SPECIALIST for this disease - not a family practitioner. They do not have the extensive knowledge as a Gastro dr would. Please try to find one asap. It will only help you and maybe avoid surgery! Good luck.
27 yo Female, Crohn's, stricturing type- terminal illeum.
symptoms at age 2....Diagnosed at 6
Bal-resection 1998
Have tried it ALL Currently on Humira, Fish Oil, D3, Entocort, B-12 shots, Align, Multi


Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 3/31/2010 4:32 PM (GMT -7)   
GP's are a waste of time in terms of managing your crohn's. You NEED a gastroenterologist and yesterday.

Surgery for crohn's is usually a bad idea if you're thinking resection. It usually comes right back- its different from UC.
You need to get the inflammation under control.
If asacol and pentasa haven't worked for you, have you tried cipro/flagyl, methotrexate, Imuran, or any infusions or injectables?
Where is your crohn's? Small intestine, colon?
it follows a sequence, if the small guns don't work, you go to the medium guns (imuran) then the big guys (humira and remi)
I know how you feel, I was on humira and remi and still nothing.

One thing you can try to keep yourself sane is lomotil or imodium to at least slow down the frequency of the bm's. you could also try metamucil or something as it can help bulk up your stool.
Good luck.
30 years old, dx with Crohn's in 1998. Currently on Imuran 100mg/day, Flagyl 1000mg/day
and Cipralex 10mg/day for anxiety. Just got off Cipro which was my drug for last 4 years.
Perianal fistula, and 2 more suspected. Crohn's only at end of colon, cecum. Remi and asacol did NADA.


Airik
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 4/9/2010 5:36 AM (GMT -7)   
im sorry i have am still trying all that.no better

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 4/9/2010 7:11 AM (GMT -7)   
Have you sought out a gastro yet? I'm speaking from experience here -- you need a specialist and you need one now. Believe me I've done my share of not taking this DD seriously and denying that I needed more extensive treatment. But 4 years ago when I found my specialist at a teaching hospital, I found the treatment and care I needed to get back on track.
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/9/2010 9:15 AM (GMT -7)   
Airik,
Can you please be more specific about what you have tried? (Doctors, Medications, etc)
Thanks,
Navy
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…


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 4/13/2010 7:33 AM (GMT -7)   
If at all possible, get to a teaching hospital and have a consultation with one of their gastro docs. They have no problem pulling the plug on drugs that aren't working and moving along to surgery which will give you your life back -- run don't walk!!
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