HealingWell
Search Close Search
☰

Guys I need your help and advice....very bad flare and nothing's helping..

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/8/2010 12:19 PM (GMT 0)
So as I've posted before I am in a pretty bad flare. Was in the hospital about 2 weeks ago and still have not gotten everything under control. about a week after I went to the hospital when they gave me antibiotics for a possible infection after seeing inflammation on the left side of my colon in a CAT scan, I was back in the same pain again. I contacted my Dr. and they put me on Flagyl (500mg 3x day) and Pred (20mg 1x day 7 days, 15mg 1x day 7 days, 10mg 1xday 7 days, 5mg 1xday 7 days). and I've been on both meds for a week now and still no change at all. Stomach pain is gone, but diarrhea is still the same (going anywhere between 10-15 time a day). I am bleeding and just not full of any energy. My friends and family say I look terrible because I've lost so much weight.
I applied for Medicaid which I have mentioned before but they would not give it to me....they gave emergency only to my husband and covered my son but wouldn't give anything to me at all. So I have no insurance. My loved ones seem to think I should go to the nearest hospital ER to see what they can further do for me. My Dr.'s aren't helping me....they are diagnosing me with things without even seeing me and saying they are sending a stool sampling kit and never sending me anything at all. I live in VA and I'm about an hour away from UVA so I may go there...but I just want some suggestions from you guys as to what I should do.
Hoping to find relief soon as I am very worried and I'm sure the worry doesn't help things too much....especially when I have a little boy to take care of.
Posted 8/8/2010 1:46 PM (GMT 0)
well, I would say your next step is the biologics, Remicade is what they usually use first. Are you opposed to it, or has your GI or yourself mentioned it yet? Also, your pred soe is pretty small, with a quick taper. You may need a higher dose for a longer time to beat this. I start at 60mgs day & tend to stay there for at least 3-4 weeks, then taper really slowly from there. Oh, I just noticed you have no insurance- which makes Remicade nearly impossible! But, there is a program, Remistart, which helps pay for the drug. I'm not sure how you go about getting on it, but I believe there is a link on the drug manufacturers webpage
Posted 8/8/2010 1:48 PM (GMT 0)
Have you seen a GI? I find it unusual that you would end up in the ER and be sent home without a referral to either contact your GI or see your GI immediately. When I ended up in the ER for UC my GI's office phoned my home for an emergency appt. that following week. Maybe you did this but it's unclear. Nevertheless the ER isn't the place to be treated for UC and I think you are being under medicated.

Sue
Posted 8/8/2010 2:16 PM (GMT 0)
I do have a GI but they just aren't helpful at all. They are not affiliated at all with the hospital that I went to so they left it up to me to follow up in which I did but they just put me on the pred. and the antibiotic without even seeing me. I feel like I need a total work up as far as blood and stool tests. I got sick back in June with a really bad cold and I'm thinking it may have sparked all of this flare but I'm not completely sure.
My husband wants to go and talk to someone at our social services dept. about my Medicaid tomorrow, so we are more than likely going to do that.
As far as Remicade, I'm not so sure I'm confident in taking it. I was super hesitant to take prednisone since my grandmother died of liver cancer and she took a lot of prednisone in her life so it really scares me. Taking medications at all scares me, I've never been one to like it.

I just feel like I'm not getting the medical attention that I need and if I'm losing weight and not feeling the greatest then something must be wrong and I want to figure out what it is. Do you think they checked my liver and things in the hospital when I went? I have a whole list of blood tests that they ran...I'll provide them and if you guys know what they mean, let me know!

Latoratory - Hemotalogy
WBC = 7.7
RBC = 4.13
HGB = 11.0L
HCT = 33L
MCV = 80.9
MCH = 26.5L
MCHC = 32.8L
RDW = 14.5
Pit Count = 290
MPV = 7.0L

Laboratory - Chemistry
Sodium = 138
Potassium = 3.5L
Chloride = 109
Carbon Dioxide = 22
Anion Gap = 7.0
BUN = 12
Creatinine = 0.90
Estimated GFR = >60
Random Glucose = 91
Calcium = 8.7
Total Bilirubin = 0.40
AST = 13L
ALT = 8L
Total Protein = 6.6
Albumin = 3.7
Total Alk Phosphatase = 60
Lipase = 134 H

If you guys can explain that to me, I'd be grateful. No one bothered to explain it to me at the hospital 2 weeks ago.
Posted 8/8/2010 2:33 PM (GMT 0)
I feel for your situation. Something is causing you to flare so badly. Have you look into watching what you are eating? and possibility the Colazal could be causing problems instead of helping? I always say this to people because when I took colazal I was bleeding and had mucus like crazy until I stopped. Some people cannot tolerate the meds it seems and it clearly is not helping you. I switched to half a dosage of sulfasalazine, and it stopped immediately.
Posted 8/8/2010 2:40 PM (GMT 0)
Zippy this is what I have been thinking! I don't mention in my sig that I have to take the generic version of Colazal...does that make a difference?
I started taking Colazal in May and that's when most of this flare started. Before, I took Asacol and that seemed to help in coordination with Canasa. However, the Asacol was just way too expensive. I now get my Canasa for free and I have to buy the generic of Colazal week-by-week.
Posted 8/8/2010 2:47 PM (GMT 0)
Bottom line is you still need to be seeing a GI. If you don't like the one you are seeing now, go to another. You will not get better by managing this on your own.

Sue
Posted 8/8/2010 2:59 PM (GMT 0)
Suebear, this is what I'm trying to do by getting Medicaid. If I can get them to give that to me then I will be on the search for a new GI. But in the meantime I have to do something to help this diarrhea and bleeding.
I think I may plan on calling my GI tomorrow and asking them for an appointment tomorrow afternoon and have them run tests and talk to them about switching back to Asacol for now. I responded very well to that, but like I said, when I switched to Colazal I started with these yucky symptoms.
Posted 8/8/2010 3:51 PM (GMT 0)
I took the generic for Colazal for ten years. It didn't affect my liver but the 6MP sure did. The prednisone was slowly killing me, I am certain of that.
Your tests are all normal from what I see. My lab sends me the results of my tests along with the normal range. That is how I know the 6MP affected my liver because my bilirubin was double the normal limit. Now done with all that crappy medicine.
Posted 8/8/2010 4:16 PM (GMT 0)
Antibiotics are of limited use with U.C. and in fact can make symptoms worse by upsetting the balance of good/bad bacteria in your gut. Infections can be ruled out with stool tests and should be done before antibiotics are given to a U.C. patient unless the doc has some other reason to suspect an active infection. TAKE SOME PROBIOTICS OR EAT YOGURT!!

I had an emergency doc put me on a similar taper schedule with a medrol dose pack, and it was useless. Until you try a few weeks at 40 mg, you won't know for sure if the steroids can control the flare. In some cases only IV pred will get the flare under control, especially if you are throwing up and can't keep pills down.

Have you responded well to prednisone in the past? If so, a proper course of pred is something you should look at. Doing too little for too short a time is useless. Bonus is that prednisone is super cheap.

You need to look at assistance programs to see if you can get a different form of mesalamine to rule out a bad reaction to colazal, or you could get generic asacol from Canada for pretty cheap. I've used Jan Drugs in Winnipeg (google to find) and they are great. If you send an American prescription by fax (and then later by mail), they will fill it and send it to your home with no border hassles. I still buy Salofalk tabs from Canada sometimes since they work best for me and are not available in the U.S.

Best of luck to you. Sorry to hear about your plight.
Posted 8/8/2010 4:26 PM (GMT 0)
I also agree that the doctor who gave you antibiotics didn't understand UC. It's not infection, it's inflammation!

I also think you are not taking enough prednisone, and should not be tapering like that. That's a regimen meant more for poison ivy or other kinds of problems, not UC. That dose would not help me at all during a flare. You need to be on 30 or even 40 mg, for a week or two at least, and not start to taper until you see improvement. And like CGK said, it's very cheap. I took it for flares for more than 20 years and have had no long term effects.

You don't mention what you are eating. I will share with you that low-fiber diet was necessary for me, especially during a flare.

That's my experience, I'm not a doctor but it seems the ones you are seeing are pretty lousy!!
Posted 8/8/2010 4:55 PM (GMT 0)
Eat two or three cans of spinach a day for several days and throw in some Konsyl bulking fiber and see what happens. I started coming out of the worse 4 month flare I ever had doing that back in December. I was going on remicade anyway in January, but could tell the difference before I even started. It's pretty easy and cheap to do on your own. If you don't like spinach suck it up and eat it anyway. Colazal made me worse after a while so I stopped it. Try sulfasalazine as it is one of the cheapest.
Posted 8/9/2010 11:48 AM (GMT 0)

Peety said...
I also agree that the doctor who gave you antibiotics didn't understand UC. It's not infection, it's inflammation!

I also think you are not taking enough prednisone, and should not be tapering like that. That's a regimen meant more for poison ivy or other kinds of problems, not UC. That dose would not help me at all during a flare. You need to be on 30 or even 40 mg, for a week or two at least, and not start to taper until you see improvement. And like CGK said, it's very cheap. I took it for flares for more than 20 years and have had no long term effects.

You don't mention what you are eating. I will share with you that low-fiber diet was necessary for me, especially during a flare.

That's my experience, I'm not a doctor but it seems the ones you are seeing are pretty lousy!!

Hi Peety - My Dr.'s don't want to give me a huge dose of Pred because I have techycardia (didn't mention that, sorry!) and it exacerbates my symptoms on higher doses big time. Even while on the 20mg these past 7 days, my heart has been pounding out of my chest!
I have tried to SCD diet here recently but feeling so crummy, I couldn't stick with it. Not that I've been out eating horribly, I just haven't been paying attention to legal/illegal foods. What consists of a low-fiber diet for you? Would love some tips.
I am headed to my Dr. either today or tomorrow even if I have to pay out of pocket because they need to see me and draw blood and see what's going on....
Posted 8/9/2010 12:36 PM (GMT 0)
Just as a note - Colazal definitely made me worse and I had to qutie almost two years ago. 

ElaineNY

Posted 8/9/2010 2:46 PM (GMT 0)
Have you tried immunosuppressants yet (Imuran, 6-mp)? You might want to give them a shot.

As for your bloodwork-I'm not an expert on reading these yet so don't 100 percent go by what I say-your hemoglobin looks a bit low and your CO2 a bit high, consistent with blood loss and diarrhea. I really can't make much of the rest of your numbers. I'm also very surprised they didn't test your C-reactive protein levels...this is a HUGE marker for autoimmune disease.
Posted 8/9/2010 3:04 PM (GMT 0)
Dr-A made a good suggestion about sulfasalazine. If you can tolerate it, it is a lot cheaper than asacol. I've seen it as cheap as .15 to .20 cents per tablet.
Posted 8/9/2010 10:57 PM (GMT 0)
Well I saw my Dr. today....let's just say he will no longer be my GI. I have never been so mad at a Dr. in my life. He wouldn't let me nor my husband speak, he cut us off in conversation and wouldn't listen to anything we had to say. My husbands face turned about 5 shades of red and we had to get out of there as soon as possible. lol
Basically he can't help me because I don't have insurance. He wanted to put me on Imuran but said that the blood test that is required before hand is very expensive. Wouldn't check my bowels or draw blood because he said that was way expensive as well.
He basically asked me if I did obtain Medicaid if I had planned on staying on Medicaid my whole life...told me to get a job and get insurance and then I'd be able to get help.
I mentioned that maybe the Colazal wasn't working for me and he straight up said NO...he said "That drug and Asacol are the same thing and the fact that you got worse when you started taking it was sheer coincidence."
So.....I left with the goal of finding another doc. I'm going to be seeing my PCP on Thursday to talk with him about all of this and have an appointment with Medicaid on Wednesday to see if we can negotiate something.
I'm so upset...I've never been treated by a Dr. like that before in my life.
Posted 8/9/2010 11:44 PM (GMT 0)
You sure make me feel happy that all my medical expenses are covered under Medicare and Tricare.

Anyway, if you have a primary care doctor - even at a free clinic - that you can trust or a good NP or PA - talk with them.  I have a great NP at my clinic that I can talk about anything.  Specialists are sometimes all money, money - not helping everyone!

Good luck!

ElaineNY

Posted 8/10/2010 1:29 AM (GMT 0)
Yes, I am going to see my Dr. who has known me my whole life on Thursday. He has seen me since I was 4 years old (I am currently 29). He should be able to give me some guidance. Right now I'm trying to see if I can find insurance for me personally since they gave my husband and son coverage and not me. My mom has agreed to pay my premium if I can find an affordable one, and a company that will take me with my UC!
We shall see.
Posted 8/10/2010 1:43 AM (GMT 0)
Are you familiar with this info from the CCFA org.?  Maybe help you get insurance - hope you find some you can afford...

Important Health Care Information for Patients!

A New Government Health-Care Reform Web site, www.healthcare.gov, allows individuals to search for public and private health insurance plans. The site produces a detailed list of potential coverage options from among 5,500 private plans, as well as the full array of federal and state programs such as Medicare and Medicaid.

On July 1, the U.S. Department of Health and Human Services (HHS) announced the establishment of a new Pre-existing Condition Insurance Plan (PCIP) that will offer coverage to uninsured Americans who have been unable to obtain health coverage because of a pre-existing health condition. For more information about how the plan is being administered where you live, visit www.healthcare.gov or read our FAQ about health care reform.

Posted 8/10/2010 1:54 AM (GMT 0)

kops2da said...
Are you familiar with this info from the CCFA org.? Maybe help you get insurance - hope you find some you can afford...



<h3>Important Health Care Information for Patients!</h3>

A New Government Health-Care Reform Web site, www.healthcare.gov, allows individuals to search for public and private health insurance plans. The site produces a detailed list of potential coverage options from among 5,500 private plans, as well as the full array of federal and state programs such as Medicare and Medicaid.

On July 1, the U.S. Department of Health and Human Services (HHS) announced the establishment of a new Pre-existing Condition Insurance Plan (PCIP) that will offer coverage to uninsured Americans who have been unable to obtain health coverage because of a pre-existing health condition. For more information about<strong></strong> how the plan is being administered where you live, visit www.healthcare.gov or <a rel="nofollow" target="_blank" href="/media/pdf/healthcarereform.pdf?LMI=1.">read our FAQ about<strong></strong> health care reform.</a>

Thank you so much! I just checked out that website and I am looking into it!
Posted 8/10/2010 2:01 AM (GMT 0)
You are welcome.  My dream at age 70 is that NO ONE go without health care and/or insurance.  about 20 years ago I was a census taker in this area.  I met a lot of nice people.  One elderly couple was sitting in their chairs wrapped up in blankets, cold (it was March in CNY).  It had to be maybe 50 in the house = if that.  I ask about the heat and they said each month they had to make a decision about affording heat/medication/food.  It was sad.  A niece helped them get some help then - SS or medicare - they just weren't aware.

Then there are many who fall through the crack as you have - I hate it.  We are retired military and therefore my husband gets everything free at VA and wonderful care.  I use Medicare and a government supplement since he is retired that pays everything Medicare does not.  Medications for me are $9 for a month regular and $3 for generic no matter how expensive it is.  I only pay Part B from my Medicare.

I hope more and more people will be able to get reasonable insurance at least.  I know that people like you are willing to pay what you can afford.

Good luck - let us know!

ElaineNY

Posted 8/10/2010 10:28 AM (GMT 0)
It makes me extremely sad and it makes me question the motives of our country. Why is it that a mother who cares for her son so that her husband can work and make as much money as he needs (which isn't hardly enough to get by) can't be taken care of the most? My son needs me, my husband needs me....I'm so scared that I'm going to die of this disease and leave them behind because no one will help me. It's not about fair or no fair, it's about compassion and caring about people who are sick. The system we have today is sad and twisted, for sure.
Posted 8/10/2010 3:54 PM (GMT 0)
jse-If it makes you feel any better, UC is hardly ever lethal and if it gets to that point, they HAVE to treat you. But honestly the illness still sucks.

I have a similar outrage-I lived in NJ most of my life, and when I got out of college looked up Medicaid. In that state, you pretty much can't get it unless you're pregnant or have kids, but pretty much anyone pregnant or with kids can get it. Yet, here I am being a responsible citizen by not getting knocked up before I'm ready, getting a college degree, etc and the government will not throw any help my way. And I couldn't afford my own insurance because I graduated into a recession and ended up with crapty temp and seasonal jobs (and one retail gig). The most I made was 12/hr with 320 in student loans due each month, and let's not even go into the medical bills. My parents, who are both out of work have been paying for my insurance through COBRA.

Luckily I got into grad school and my program offers full tuition remission, a nice stipend, and healthcare.
Posted 8/10/2010 3:55 PM (GMT 0)
I work for an organization that operates safety-net clinics. In fact, they only see adults who can't qualify for Medicaid but can't afford insurance (hence, the term "safety-net"). You pay what you can. They arrange for labs and specialists to donate services, you just might have to be patient (but they would never let you suffer). Our clinics are faith-based, they are the clinics most likely to operate this way, I think, vs. health department clinics. Make some calls! I'll bet that GI of yours does not participate as a volunteer, from his attitude. Shame on him.

You will not die, even if you have to use the ER (be sure to pursue financial assistance, don't ignore the bills). But try to use this kind of clinic instead, it's much easier and smarter.

Regarding low fiber, I had to avoid lettuces (even now, they are harsh), raw veggies including celery, and nuts. They are the worst things for you if you can't handle high fiber. Some people say fiber supplements help them (like Metamuci) but it would really make me suffer. I could actually handle spicy and red meat with no problem...go figure.
✚ New Topic ✚ Reply
12