severe flare up

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cigsbeezon
New Member


Date Joined Aug 2008
Total Posts : 9
   Posted 8/14/2008 1:17 PM (GMT -6)   
I'm new to this board but have learned alot just skimming through here.  I'm kinda new to ulcerative colitis.  I was diagnosed back in 1998. My flare up lasted only about one year.  Wasn't anything major though and eventually all symptoms went away.  I have been symptom free for the last 10 yrs.  In fact, I though they might of misdiagnosed me.  Well last week symptoms returned and have gotten worse every day. I'm now having SEVERE abdominal cramps, anywhere from 10-20 painful bowel movements per day, have lost 5 lbs in one week.  I cannot eat or drink anything without knowing that I'm going to have to pay for it.  Is this a normal flare up? Like I said, I'm not very educated about this disease because it was so long ago being diagnosed and not having a bad experience when first diagnosed.  What I'm going through now is awful.  I cannot leave my house for long periods of time.  I did make a dr's appt for tomorrow only out of desperation as I have no health insurance right now to hopefully get some meds to get this under control and make this awful pain go away.  Any advice or suggestions about what type of meds my dr might put me on or what to expect would be greatly appreciated. Thanks in advance.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/14/2008 1:37 PM (GMT -6)   
Hi Cigsbeezon,

Sorry to be welcoming you here, your story sounds a bit like mine. Originally dx'd in 2000 my first flare up was brought under control quickly with sulfasalazine and rowasa, I eventually changed to Asacol and as long as I took my meds I was fine, when I did not I would flare up some, but nothing like last Oct when I had to stop taking my Asacol cold turkey, I had 25+ bm's a day, blood, mucous, cramping, was a zombie with bloody poop spurting out my bum.

Glad that you got a Dr's. appt, my recommendations: tell your Dr. everything all symptoms and tell them that you do not have insurance and need to take care of yourself as economically as possible. Sulfasalazine is much cheaper than Asacol or Lialda, ask your Dr. about that there is also Azulfadine. I think Rowasa is pretty expensive, ask about hydrocortisone enemas instead (those are steriods but I think cheaper).

when I was dx'd my new health ins had not kicked in yet and I could not wait to go, so I paid $250 to see the specialist and he did a sigmoidoscopy (cheaper than a colonoscopy) but charged me for a lesser test like $800 or something, I did rack up like $3k in medical bills but the place where I go let me do a payment plan, it took me a year or so to pay it all off but I did.

Please let us know how the visit goes and stay strong you will get through this!!!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


sushik
Regular Member


Date Joined Aug 2008
Total Posts : 35
   Posted 8/14/2008 2:57 PM (GMT -6)   
Cigsbeezon,

Your explanation of your current symptoms sound similar to my flare ups. Beth75 gave some very good advice for you. I'd just like to add that you will probably be asked to do a stool sample for parasite/pathogens, and I suggest you take it. You may have c-diff. I contracted that a couple months ago, and it felt EXACTLY like a UC flare up so instead of getting a stool sample i just upped my ememas, but that did nothing.

If it's a UC flare up your least expensive way to go is like what Beth75 said: Sulfasalazine and cort enemas to treat both ends.
31 yr old male
Diagnosed: 7/07 - UC - Pancolitis
Current Meds: 2 Rowasa enemas/day ; 6 Asacol / day


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 8/14/2008 4:29 PM (GMT -6)   
Good advice.

Since you already have the diagnosis, I would stress that you don't have insurance and you may avoid a sigmoidoscopy ($500) and colonoscopy ($1500). They may be good diagnostic tools, but I wouldn't tax my budget that way only to see what's going on. It may make some difference in treatment, but 5-ASAs are a likely first step anyway. You can always reevaluate if the meds don't work.

Sulfasalzine is pretty inexpensive, probably the least expensive option.

Insurance companies negotiate their prices with doctors and there is sometimes a very large difference between the going rate for a procedure and the negotiated rate. Definitely ask for the negotiated rate. I see my insurance invoices, and for example, a recent blood test was charged at ~$300 and the negotiated price (the price the insurance company paid) was ~$80. You should be able to request the lower price.

Good luck.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/14/2008 4:50 PM (GMT -6)   
Absolutely right. I recently received a lab bill for a blood test that the insurance company applied to my deductable. They billed $336. Because the lab is a provider for my insurance, they could only bill me for the agreed-upon rate - $18.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/14/2008 9:42 PM (GMT -6)   
Remember, friends:
4. Use good judgement.  NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs.  Remember that what's right or has worked for one person may not be what's right for you.
 
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 8/15/2008 8:14 AM (GMT -6)   
I have used the thumbs down button to add this user to my ignore list so I don't have to see it anymore.

cigsbeezon,

I'm very sorry you have to weed through this spammer's posts just to get good information. This is a very good forum full of wonderful people.

Your symptoms also sound like mine right now. I don't have insurance either. I'm waiting to hear about state sponsored insurance at the moment. Currently I'm taking Sulfasalazine and it's only $15 for a 90 day supply here in the state of Indiana. Check with your state's website to see if they have a similar prescription plan. You can also send letters to the pharmaceutical companies to get a better price if not free.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


serothschild
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 8/17/2008 2:13 PM (GMT -6)   
cigsbeezon,
I wish that someone had just explained the symptoms I would be experiencing during a flare so I could communicate effectively with my doctors to be medicated properly. I am giving you a link to a site that explains the severity of flares in good descriptive language and medications associated with each so that you can speak clearly with your doctor. I wish you the best and here is the site.

http://www.uptodate.com/patients/content/topic.do?topicKey=digestiv/10728

It was very helpful for me to read, and I've been diagnosed for almost 4 years.
Sandra


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/17/2008 3:23 PM (GMT -6)   
Indiana, that user is no longer a member here, no need to be concerned.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


cigsbeezon
New Member


Date Joined Aug 2008
Total Posts : 9
   Posted 8/17/2008 4:45 PM (GMT -6)   
thank you all for the resourceful responses.  It has helped alot.  Here is an update: Dr. put me on Sulfasalazine (4 grams per day). He also gave me vicodin for the pain.  It seems as long as I'm on the vicodin for the pain, it seems to relax my body and the bowel movements aren't as frequent. But when they wear off, they come back again.  I started the Sulfa on Friday morning.  Shouldn't I be getting some kind of relief?  I do have to get a stool sample, I'm trying to find the cheapest lab.  Hopefully tomorrow I will get that done.  Thanks again for the wonderful advice and suggestions.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/17/2008 8:41 PM (GMT -6)   
Best of luck and I hope and pray you will be feeling much better and very soon.
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

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