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Help please. Bleeding and flaring

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Ulcerative Colitis
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Posted 4/30/2015 11:35 AM (GMT 0)
Long story short. I'm 23. Been diagnosed with UC since 2013 now they think it's Chrohn's. I was in a bad car wreck in December. Managed to walk away but my brother was killed. Since the wreck I've had problems with constant blood in stool. Started flaring worse and doc put me on prednisone thirty mg and it hasn't helped at all. Prednisone has always helped but doesn't now. I was on aasacol and mesalamine enemas but stopped yesterday because I think I may be allergic or have reactions because it's only gotten worse and never helped my symptoms. I would like to avoid stronger medications if possible and willing to do anything from fecal transplant to diet restrictions. Also would appreciate prayers and I'll pray for you. Thanks everyone!
Posted 4/30/2015 11:43 AM (GMT 0)
I'm sorry to hear about your accident and the loss of your brother. That is unimaginable . I would ask the doc for rowasa enemas or canasa suppositories . When was your last colonoscopy?
Posted 4/30/2015 12:23 PM (GMT 0)
Rowasa hasn't seemed to help. I actually think it hurts since I suspect I have a mesalamine intolerance. Mesalamine is the active drug in Rowasa I believe..
Posted 4/30/2015 12:42 PM (GMT 0)
You should not stop all of your uc medications without informing your gastroenterologist. Call him/her about you allergy concerns and other medications are available, like immunosuppressive medications (imuran, 6mp, aza) that can be prescribed instead. Most of the crohn's and uc medications are similar.

If you're bleeding again you should see your doctor, have stool tests done to look for pathogens, and likely a scope (eother a signoisoscopy or colonoscopy) done.
Posted 4/30/2015 1:44 PM (GMT 0)
Have you been using Asacol since you were diagnosed in 2013? If not, what meds were you using? My understanding of mesalamine intolerance is that it's something that happens fairly early when you start taking it. Don't know if intolerance would crop up 2 years later. Others here may know more about that.

This could just be a bad flare that cropped up because of all the stress you have no doubt been under since the car accident. The usual prednisone dose for a flare starts with 40 mgs and I have read of some people needing a starting dose even higher to kick start the anti-inflammatory response. You may need a higher dose.

You could have a problem with the sulfates in the mesalamine enemas. They make sulfate free Rowasa that perhaps you could try.

I agree with the others -- contact your dr as soon as you can. Were you in full remission prior to the accident? If the bleeding started right away, have they done any tests to be sure that you don't have an internal injury?

I am sorry for the loss of your brother. It must be very difficult emotionally and getting a flare in addition is an awful lot to cope with. You are in my thoughts. I hope things get better soon.
Posted 5/1/2015 1:54 AM (GMT 0)
Agree with CCinPA. I have mesalamine intolerance and I knew pretty much immediately. It was horrible. Diarrhea, vomiting, high fever, violent chills, my whole body hurt. Stopped the Lialda and got better. Then was put on Canasa and the intense, and I mean INTENSE abdominal cramping started and it didn't go away until after several remicade infusions. Usually mesalamine intolerance shows up right away.

Same with the prednisone. 30mg wouldn't do anything for me. I need to start at at least 40mg, and when it's really bad 60mg.

Why do you want to avoid stronger medications? Especially if you are in fact intolerant to mesalamine, stronger medications are your best options. Remicade was a life saver for me.
Posted 5/1/2015 2:33 AM (GMT 0)
Enemas would be helpful and there are steroid enemas you could use. You can't use them long-term the way mesalamine enemas can be used however.

Definitely see if you can get the Rowasa-sf type of enemas. They are so beneficial you shouldn't walk away without trying them. It might not be the mesalamine but the preservatives in regular kind that are causing you problems.

Diet modifications: try eliminating fiber for a couple weeks and see if that reduces bleeding. My bleeding stopped when I eliminated wheat products. Wheat is harder to eliminate than fiber but try that for 30 days and make the call whether to continue if you see improvement.
Posted 5/1/2015 3:05 AM (GMT 0)
Some people are intolerant of mesalamine. You should see about trying an immune suppressant. It sounds like you really need to find a good GI and have a relationship so you can keep in touch on a regular basis. I've had it where prednisone is more or less helpful, Sometimes a higher dose is needed to get things headed in the right direction but it seems like the bigger picture is that your IBD is not controlled. You need to be proactive so you can get a treatment plan that works. It's nice to have you here on HW, please go see your GI and let us know how it goes :)
Posted 5/1/2015 8:34 AM (GMT 0)
Using painkillers always works for me. It puts your whole colon to sleep basically and eliminates 100% off all symptoms.
Posted 5/1/2015 11:30 AM (GMT 0)
Many painkillers can make you worse. This poster is talking about high power narcotic painkillers, which are addictive. While something different works in everyone I personally think becoming a druggie to get rid of UC is not a fair trade, especially when it might not even work for someone else. This poster also talked about getting fired from their job.
Posted 5/1/2015 1:15 PM (GMT 0)
Is there a good website to view detailed information on side effects of Humira or Remicaid. I see some increase a chance of certain diseases but it doesn't say how much. So for example, "3 out of 1,000 patients developed x disease". Just curious. Loving all the advice and support. I'm cutting out meat as much as possible to see how that helps. My GI said in his clinical experience vegetarians have longer periods of remission. My GI is a great guy. Very caring and very open minded. Dr. Huggins in Weatherford, TX in case anyone lives in this area
Posted 5/1/2015 1:32 PM (GMT 0)
The risk is very small. iPoop could probably give you the exact number, he's posted it before. But there are risks with everything, even Tylenol. For me, I didn't even care if that risk was large (and it isn't) because I would have done anything to get rid of the pain I was in. It's always a matter of benefits vs. risks. But the risks with Humira and Remicade are very small. Yes they are there and are possible, but you are also monitored very well with blood tests and physicals and things so if you did develop something it would be caught pretty quickly.
Posted 5/1/2015 3:28 PM (GMT 0)
I think that far too often when people talk about risks with these biologics they are mostly referring to bad risks, such as cancer. If you talk more about side effects in general there can be several that are not such small possibilities. Many people experience a lot of fatigue for a day or two after infusion and I am seeing more and more people, one I personally know, who suffer extreme joint pain from Remicade which may possibly not go away after discontinuation. I also personally know another person who was on Humira for RA and almost died from a life threatening infection, although this chance is somewhat rare.
Posted 5/1/2015 4:08 PM (GMT 0)

mcfarl73 said...
The risk is very small. iPoop could probably give you the exact number, he's posted it before. But there are risks with everything, even Tylenol. For me, I didn't even care if that risk was large (and it isn't) because I would have done anything to get rid of the pain I was in. It's always a matter of benefits vs. risks. But the risks with Humira and Remicade are very small. Yes they are there and are possible, but you are also monitored very well with blood tests and physicals and things so if you did develop something it would be caught pretty quickly.


Sure here you go:

  • The odds of remicade improving your uc symptoms are 60+ percentage.
  • The risks are very statistically small, but major if they happen to you. Lymphoma is the one that scares people the most, the odds are 6 in 10,000 (0r 0.06%) when used in combination with an immunosuppressive medication (such as Imuran, 6mp or aza). The odds of the average, healthy person on the street getting lymphoma are 2 in 10,000 (0.02%). Of those who get lymphoma, 60% are treated and their lymphoma goes into remission. To put some other odds out there for perspective, the odds of death via heart disease are 1 in 5. The odds of death by car crash in the US are 1 in 100.
  • If you get an infection requiring antibiotics to treat (UTI, bronchitis, sinus, etc) while on remicade, you need to seek treatment when you first see signs of it, rather than waiting another week to see if it runs its course on its own. You don't have to worry about cuts, scrapes and bruises, just major infections necessitating antibiotics.
  • You might get an extra cold a year, and instead of it lasting 1 week, it might last 1.5 weeks and be more severe.
  • Injection reactions are fatigue or headache, pretty minor stuff, and you are usually premedicated with tylenol and an anti-histamine medication (either Claritin or Benadryl) to help prevent it. Some report fatigue during the remicade infusion process, although it is more often than not the premedication with Benadryl that causes it.
The Crohn's and Colitis Foundation of America: is the source for my statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 5/1/2015 4:33 PM (GMT 0)
Sorry for you loss.
Posted 5/2/2015 12:03 AM (GMT 0)
Sorry too to read what you are going through.

One good bit of advice I had from a GI - if Pred makes no difference or things worse when previously you have responded to it, get checked for infections, particularly c difficile, very thoroughly.
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