Severe Ulcerative Colitis Pain!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dyekid28
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/27/2010 2:05 PM (GMT -6)   
hi im 22 year old male and have had UC for about 5 years now, im in severe pain almost every day and have no insurance, however my doctor seems to ignore that im still in pain i take 120mg of prednisone a day as well as lialda and immuran..i was seeing if anyone else has been prescribed something for their pain or if they just dont do it for UC patients for a reason im not aware of, either way i cant live a normal life in the pain im in daily

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 22057
   Posted 9/27/2010 2:41 PM (GMT -6)   
I take Bentyl which helps with the spasms and in the past I have taken Darvocet for the pain. The main problem with narcotic pain relievers is that it can cause constipation or slow the bowel down. What is the extent of your Uc? Have you ever been on rectal meds?
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
current status: flaring! Ugh!
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(25mgs), Allopurinol (100mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis/Celebrex~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10349
   Posted 9/27/2010 2:45 PM (GMT -6)   
That is a ridiculously high dose of prednisone as far as I know. It sounds like you could definiely benefit from seeing another GI. I know it's hard when you're unemployed and it's expensive butwhen you're in terrible pain and not getting the treatment you deserve, you have to take things into your control. If you don't get some help, you will end up in the hospital, that wil cost a lot more than paying out of pocket to see a GI. I paid $350 out of pocket when I was uninsured. My GI that I have a relationship now would probably see me for a lot less because she knows me but thankfully I have insurance. You need to get some help asap. Just my opinion.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

erinkate23
Regular Member


Date Joined May 2010
Total Posts : 78
   Posted 9/27/2010 2:47 PM (GMT -6)   
120MG a DAY???  That is an INSANE amount of prednisone.  At the height of my disease, in the hospital, the most I was ever on is 80 - that's NUTS.  That level of pred, on an ongoing basis, can cause adrenal dependency and all sorts of badness.
 
You need to find another doctor.  Stat.  You are clearly in a major flare, and you need to find a doctor who will work to get you back to normal.  Despite your lack of insurance (get insurance - if your parents have insurance they can cover you until you're 26 per Obama's new healthcare regs), you are probably in the neighborhood of needing to go to the hospital.
 
While in major flares, my doctor prescribed Vicodin, and I was on heavier painkillers at the hospital - but it is NOT a long-term solution.   You need to find a way to get this under control.
 
Have you tried the specific carbohydrate diet (SCD)? 

dyekid28
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/27/2010 2:57 PM (GMT -6)   
i was put on a dairy free diet and that didnt help and have been to 4 diff GI doctors..this one wanted to go "hard" on the prednisone and try to keep me in remission..ive been taking 120mg a day for about 3 months and hate it ..i dont feel any better and my face i look like a darn chipmunk..i have severe colitis throughout my entire colon however my ileum and rectum are okay..i was suggested to have surgery to have my colon removed but just cant afford it ..i called my doc and told him about my pain and he said to goto a urgent care or ER cuz i dont have insurance but really dont know how much good those will do for long term resolutions

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10349
   Posted 9/27/2010 3:03 PM (GMT -6)   
3 months???? wow, that is really awful. I feel bad for you to be going through this. It sounds like your body really needs a break. I think the hospital would be the best place for you at this point. Are you on any rectal meds? It's weird for UC to spare the rectum as far as I know. You definitely need to know this is UC and not Chrons before considering surgery. Like Erin said, Can you get back on your parents insurance?

also check http://www.healthcare.gov/

there may be some state options where you live. Remicade may be a good option but it's expensive.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

dyekid28
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/27/2010 3:05 PM (GMT -6)   
no rectal meds ...and im not sure if they have it or not..i thought that bill didnt take effect yet

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 22057
   Posted 9/27/2010 4:04 PM (GMT -6)   
Any doctor can write you a prescription for rectal meds. The cheapest of them are the generic form of Rowasa which is mesalamine rectal retention enemas. Even if your whole colon is involved, rectal meds can help.

And yes, the bill became effective in March:
The Affordable Care Act Becomes Law

March 23, 2010

On March 23, 2010, President Obama signed the Affordable Care Act. The law puts in place comprehensive health insurance reforms that will roll out over four years and beyond, with most changes taking place by 2014. Others have already begun. Use this timeline to learn about what’s changing and when.

Changes to note:

* $250 Medicare drug cost rebate
* Expanded coverage for young adults
* Small business tax credits
* Pre-Existing Condition Insurance Plans
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
current status: flaring! Ugh!
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(25mgs), Allopurinol (100mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis/Celebrex~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

FutureMD
Regular Member


Date Joined Sep 2010
Total Posts : 74
   Posted 9/27/2010 4:55 PM (GMT -6)   
I feel for you bro! I hope your situation gets better, asap!

teachtoreach
Regular Member


Date Joined Mar 2010
Total Posts : 78
   Posted 9/27/2010 8:56 PM (GMT -6)   
Not only does the amount of prednisone you are on completely scare me for your safety, but obviously it is not helping. Also, with no insurance, I am sure you are already probably paying a hefty amount for your meds each month. Definitely see if your parents have insurance and go on their plan...you can be on it until you are 26. Regardless, you need to find a different doctor. I am on my second GI and I love her....but I stayed with my first doctor for 9 years and hated every minute of dealing with him.

Also, I second that you should go to the hospital. The E.R. docs might not be specifically trained for dealing with digestive diseases but I know they would have a G.I. on staff somewhere in the hospital they would consult. Also, as you don't have insurance, you would probably get a discount. From there you can work out a payment plan that is affordable for you.

I wish you the best of luck and hope you find relief soon!

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 9/28/2010 3:33 PM (GMT -6)   
In my case prednisone caused some of the pain I was having so I think it's entirely possible that's what's happening with you. 120mg for 3 months is way way way beyond anything I've heard of being prescribed for UC. I was on 60mg for 4 weeks and I thought that was a lot. Please please see a new doctor. I am scared for your health!
Jennifer
Originally Diagnosed: 7/08 Mild left sided UC
Current Flare started: 12/09 involving whole colon.
Current Meds: Prednisone (5mg, tapering), Remicade (Infusion 3: 8/19/10), Imuran (50mg), Lexapro (10mg), lunesta (3mg).
Past Meds: Mesalamine Enemas, Canasa, Hydrocortisone Enema & Supp. Oral Mesalamine Intolerant.

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3787
   Posted 9/28/2010 4:31 PM (GMT -6)   
I am so sorry to hear of your condition and pain. Too much for your age without getting support from somewhere.
Is it possible to talk to your parents and ask about whether their insurance plan would allow you to be added? Someone your age usually costs MUCH much less than an older adult and it would be the best way for you to get treated.
What you may not know is that people without insurance pay more for treatment (especially emergency room) than insured peeps.
Having insurance pays for itself quickly if you have a condition like UC.

Besides the pain do you also have other symptoms? Bleeding, diahrrea (we say D here), urgency?
As you will read here some people have pain and some don't.
As mentioned some people had a bad reaction to pred such as pain.
Did you have pain BEFORE the pred?
What symptoms caused your doc to prescibe pred?

It's going to be tough to get pain meds at the emergency room. They deal with people who come in just to score legal drugs so they treat everyone in pain as if they might be faking. And before you start pain meds it's important to figure out WHY you have pain.
Some people take other types of medication to relieve pain from ulcers and you need a good doctor to sort that out.

That's really the bottom line--you need a good GI doctor, not the one you have (with or without insurance).
Don't wait, your health is important and you can't live in pain.
In remission April 2010 after 10 years of suffering and no remission ever
Jan 2010 started SCD diet (modified to remove dairy, fruit & juices)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
at 5.5 month stage homemade yogurt, hard cheese and some fruit OK :-)
SCD Diet: Gluten/grain-free, starch-free, low carb, low-sugar
Supplements: tsp. fish oil, Vit D3 5000 with oil/fat, veggie juice, sunflower seeds, VSL#3, (4) Citrucel, (1) turmeric capsule, (1) calcium
Highly recommend: the book "Life without Bread" and the Specific Carbohydrate Diet
Rx: (6) balsalazide daily, mesalamine enema occasionally

sheree18
Regular Member


Date Joined Aug 2010
Total Posts : 157
   Posted 10/9/2010 4:37 AM (GMT -6)   
Go to your local chemist and get a natural pill called MINTEC...it will help with the pain..Or if this is to expensive then go to the supermarket and buy peppermint tea.. Drink the tea black and leave the bag in while drinking it. It will help you with the pain as i have been were you are now. Also with the high dose of steroids.. the only time i had as much as you was in hospital every three to four hours at 50mg injections. You should be getting monitored whilst having high doses because it can cause so many other problems..... A new doctor sounds like the go...I feel for all you guys that have to have insurance for your doctors. Im in australia and my medical bills are no where near what you pay, I am soo lucky in that way.

NatWell
Regular Member


Date Joined Dec 2010
Total Posts : 101
   Posted 2/27/2011 8:24 PM (GMT -6)   
percocet 325mg really helps with pain along with a nausea pill like zofran

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/28/2011 12:21 AM (GMT -6)   
I agree it's time to go to another GI, or get checked into a hospital. Money isn't worth your life. 120 mg for 3 months is too long and quite dangerous. I'd be seriously concerned about your adrenal glands, osteoporosis, and potassium deficiency, and not to mention prednisone induced diabetes. Better get on some other meds. I certainly emphatize with your situation.
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/28/2011 12:33 AM (GMT -6)   
dyekid28 said...
120mg of prednisone a day as well as lialda and immuran.


120 mgs of pred a day? OMG!!! Are you sure it's that high of a dosage?

Whatever you do, even though that's a seriously high dosage, do not stop taking pred. You have to taper off it very slowly; otherwise, you could put your system into shock.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 23, 2014 11:28 AM (GMT -6)
There are a total of 2,249,319 posts in 250,216 threads.
View Active Threads


Who's Online
This forum has 157448 registered members. Please welcome our newest member, deepanmarley.
428 Guest(s), 23 Registered Member(s) are currently online.  Details
MarieLS, nooneknows, JaSanne, Jay-J, Madpotter, ToddPaul, hypoHashimoto, Wade1963, Roxie60, Scaredy Cat, brookpe, orchid_rain, Rchodos, Park12, j1ayjay, shlafy, InTheShop, Old Mike, Rn1987, LiveByVibes, Katmom, Momtogigiandquinn, Buzzbomb


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer