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Ulcerative Colitis
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Posted 2/2/2015 2:32 PM (GMT 0)
Hey all, I posted a while ago on this forum just to introduce myself and say what issues I have.

Well, I had another colonoscopy at Mercy Hospital to have a second opinion. After it was all said and done, my GI told me that I had severe UC, on the Mayo scale she ranked it a 3. She had me on 40mg prednisone once a day to stop the bleeding. The bleeding persisted, so she upped my prednisone to 60mg. That was about a week ago, and my bleeding still persists.

I had a CT with contrast done on friday, waiting for those results.. And I've had 3 blood transfusions because my hemoglobin levels are hovering around a 7-8 as opposed to 14 "?"..

The idea that the bleeding and discomfort hasn't stopped has me very concerned, but I go to see my GI at the end of this week, and we'll speak about possible avenues to take to finally beat this disease... Scary that at 26, this is where my life is going..
Posted 2/2/2015 3:17 PM (GMT 0)
Sorry you are struggling with this disease. Do you know where your inflammation is?

One thing you can do is add a rectal mesalamine retention enema to your treatment. The prednisone should be helping a lot (are you feeling better?). The bleeding might be slowing, or lessening....can you say? Rectal meds treat the exact area that is bleeding.
Posted 2/2/2015 3:25 PM (GMT 0)

kazbern said...
Sorry you are struggling with this disease. Do you know where your inflammation is?

One thing you can do is add a rectal mesalamine retention enema to your treatment. The prednisone should be helping a lot (are you feeling better?). The bleeding might be slowing, or lessening....can you say? Rectal meds treat the exact area that is bleeding.

I don't have my files on me to look at readily, but the dr had me get the CT because she couldn't go any further with fear that she would puncture my intestines. So, as far as I know it goes back fairly far..

Last time they had me on a hydrocortisone enema, and it did nothing but irritate me. The bleeding is fairly severe now, so its not only located in the sigmoid colon, but all the way through. The bleeding hasn't lessened at all really, at least not obviously has.

The prednisone is a temporary feel good I feel like, because as soon as I eat anything with any substance i'm in pain.. My sleep is always interrupted by this stupid disease lol.
Posted 2/2/2015 3:26 PM (GMT 0)
What medication are you taking for the UC? You should be on mesalamine oral and rectal. Has your GI mentioned 6mp/imuran or bilogics? A lot of people can get out of a flare quickly with remicade.
Posted 2/2/2015 3:32 PM (GMT 0)
so who exactly gave you your second opinion ? how many docs have you seen ? when you say "they", is that your GI ?

just trying to get a feel for your care so far -

when you have a minute, add a siggy - it helps us know where you've been and where you're at -
Posted 2/2/2015 3:40 PM (GMT 0)
also with this level of bleeding, it is possible there is also c-dif infection. having two stool tests about 3 days apart to rule out c-diff could be useful.

it also sounds like you need to begin one of the biologic treatments - maybe Remicade or Entyevo. Humira could work, and it is injectable at home.
Posted 2/2/2015 3:45 PM (GMT 0)
ITA with DB. If 60 mg/day of steroids is not getting you to the place where you can eat or sleep without pain, then you need to move to another treatment plan.
Posted 2/2/2015 3:49 PM (GMT 0)

notsosicklygirl said...
What medication are you taking for the UC? You should be on mesalamine oral and rectal. Has your GI mentioned 6mp/imuran or bilogics? A lot of people can get out of a flare quickly with remicade.

I was on mesalamine for a few months after my initial diagnoses of proctitis, and it did nothing. So basically they've been trying to treat it with steroids for the past year or so, until I got up to Mercy Hospital to Matilda Hagan. She is the doctor treating me now.. I believe she plans on putting me on some sort of long term treatment starting this thursday.

Let me sum up my story as best as I can..

-I began bleeding around Feb 2014
-Saw ER doctor, who referred me to specialist
-Saw specialist, had initial diagnosis of Proctitis
-Treatment was Mesalamine and Hydrocortison enemas
-Treatment wasn't working, and began feeling sick on the Mesalamine over the course of 6 months or so.
-Scheduled 2nd opinion colonoscopy at Mercy Hospital with Matilda Hagan
-Diagnosed with severe UC, beginning treatments with prednisone to stop the bleeding
-Constantly in and out of the hospital for blood transfusions
-Going up again this thursday to begin my long term medication.

I'll make a little signature up to make it easier for people to follow, thanks guys.
Posted 2/2/2015 4:00 PM (GMT 0)
You should really get a stool test to check for c diff infection.
Posted 2/2/2015 4:09 PM (GMT 0)

notsosicklygirl said...
You should really get a stool test to check for c diff infection.

I'll speak to my physician about this, but I believe she took quite a few cultures while doing the procedure. She also did a few blood tests for bacterial infections, HEP B and a few others. Not sure if I heard anything about a C diff infection, so I'll be sure to ask about that..
Posted 2/2/2015 4:14 PM (GMT 0)
ya, well, while I'm never in a hurry to recommend HD drugs, I do think you need to get a handle on this thing soon - what you've been doing isn't working - losing some blood is one thing - needing transfusions is a big deal - and you need to say adios to all that pred -

hope she gives you some good answers -
Posted 2/2/2015 4:16 PM (GMT 0)
Yes... pred should have calmed things down.

It could very well be a bacterial infection (c. diff) and in that case antibiotics (but FMT is emerging as the cure) could eradicate it.

In the meantime, have you tried liquid nutrition to rest the bowels and ease symptoms? Ensure is available, but Absorb Plus shakes are a wonderful alternative.

Other than that, I can suggest resting and taking care of yourself until you are able to figure out what it is you are dealing with. Stress reduction is very important.

Best.
Posted 2/2/2015 5:28 PM (GMT 0)
So I just spoke to my doctor, and she told me that she wants me up to Mercy Hospital for a week to start a steroid IV treatment.

That's kind of rattled my, and my wife's core.. I'm scared, I've never had to do anything like this before, and I don't know what to expect.. The hospital is 3 hours away from my house, so my wife naturally couldn't visit, i'm a full time student so this is going to hurt my schedule for schooling, and its just scary..

Ugh.
Posted 2/2/2015 5:31 PM (GMT 0)
It does sound quite disruptive for you and your wife, but your DR is following the protocol to get your disease into remission fast. You seem to be steroid resistant.

Please talk to her about all of the options she is considering. You will benefit from as much information as you can get so you are not surprised by the recommendations your DR is making and will make.

And please ask her directly about whether she cultured for c. diff. and what the results were.
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