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Ulcerative Colitis
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Posted 5/5/2016 12:36 AM (GMT 0)
So I am 27 yrs old and was just diagnosed with UC. This has been very hard, and I have been admitted over the past 2 months 6 times into the hospital and I keep getting the same information from my doctors to stay on the same medication and to just keep doing what I am doing, but I am still in pain, I am still bleeding ( enough to have to get 5 blood transfusions) which caused anemia and heart problems. The doctors just keep telling me that I am healing and to keep taking the same meds, but I feel like I am not getting better. Right now I am taking about 25 pills a day, and am in constant pain. Is this my new normal?
Posted 5/5/2016 12:57 AM (GMT 0)
Hi 00 -
Gosh, I am so sorry for the bad time you are having!
What meds are you on?

The gut is slow to heal, but, no, this should not be your new normal!

If you create a profile with your meds, that helps in the conversation. I am glad you found us!
Posted 5/5/2016 1:04 AM (GMT 0)
Oh ok I will update that, I am on Lialda 4 pills a day, Prednisone 8 a day , Humira, Narco, Dyclyomene 8 a day, Tylenol 6 a day.
Posted 5/5/2016 2:09 AM (GMT 0)
None of that sounds normal or acceptable. If you're not getting better, you need to consider options. Are you seeing a GI doctor? If so, are they an IBD specialist? You may benefit from seeking out a true IBD specialist, they can offer options other GI's might not be knowledgeable about. Humira, while it sounds like a great option, isn't as flexible on the dosing as something like Remicade. The dose is set regardless of weight. You may need more or less, but it only comes in one dose.

Some people do worse on mesalamine (lialda) is it possible you've gotten worse from that?

have you tried rectal meds?

Did you have stool tests? You might have a bacteria that is mimicking UC. You can treat the UC with everything available, if you have a bacteria, you will still have symptoms.

How long have you been on the prednisone?

Did you have a scope? Was the pathology UC? What was the severity? Where was the inflammation located?

I can tell you dicyclomine does nothing for me. Lialda became ineffective. Tylenol probably isn't doing much. Narco would likely slow things but it's just for pain, I believe. Prednisone should help within a few weeks of starting. Did you start at 40mg? Some start higher, like 60mg...
Posted 5/5/2016 11:47 AM (GMT 0)
I am seeing a GI doc, they are specialty docs but I have sent my info over to Mayo Clinic in MN to see if they would be willing to take on my case for more help. The lialda works pretty good if I don't take it I pretty much just cant eat.

I have tried rectal steroid enema but it did not help at all.

They did do a number of stool tests to verify that I did not have something else or a parasite. I have been on prednisone since the day I found out I had UC which was March 16, 2016. I was orignally on 160mg I am on 35 at the moment. I did have a colonoscopy where they found out that I have pancolitis, ( I was adv it was one of the worst cases the doctors have seen) They also have done MRI's and CT scans to check on everything. I was adv the inflammation was through out the entire large intestine.

I am glad to hear that this is not normal, this has been super stressful and heart breaking, we are realizing that I have been dealing with UC since middle school, I used to always have stomach problems but my doctors just always told my parents I just had a sensitive stomach. But it was never as bad as it is now. At this point I am pretty much willing to try anything to get this undercontrol.

Post Edited (ucsucks00) : 5/5/2016 5:51:15 AM (GMT-6)

Posted 5/5/2016 12:12 PM (GMT 0)
You need a good GI IBD specialist. Especially if you have pancolitis since it can be a bear to treat. Sometimes you have to travel to get a good one. That's what I had to do. The doctors local to me were absolutely useless. I also had pancolitis. Best of luck.
Posted 5/5/2016 3:44 PM (GMT 0)
Have your humira levels checked.
Consider adding a thioporine such as imuran

I agree bout Ibd specialists. Mayo has some excellent physicians
Are you somewhat near there?

The norco and dyclomysine are likely making things wors
Switch to tramadol instead of norco
Alternating hot and cold packs does wonders for the cramping
With all the Tylenol make sure they are monitoring your liver
Posted 5/7/2016 6:42 PM (GMT 0)
The prior poster is correct about Pancolitis. (I have it too.)

Try to find an IBD Specialist. Not all GI Docs are IBD specialists.

I don't think it sounds like you are making progress, either.

Also know there is a test for GI Inflammation called Fecal Calprotectin.

Ask your GI to do it.
Posted 5/10/2016 10:39 PM (GMT 0)
So sorry you're going through this. I was diagnosed right around the same age. Hang in there, you'll figure it out.
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