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kidneys, colitis and the hospital stay

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Ulcerative Colitis
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Posted 8/3/2011 7:34 PM (GMT 0)
This past weekend when I was admitted to the hospital due to a kidney reaction to Apriso,  I received my own private room.   I did not request it nor could I pay for it.   When I asked, they told me they would be doing stool specimens and it was medically necessary for me to have privacy.  Needless to say I was overjoyed and thrilled.  

Later in my own room, I noticed when the nurses, aides, drs, etc came in, they were in gloves, masks and gowns.... when I inquired about being in quarantine, they said that I was being tested for C-Diff and it was standard practice.  So my C-Diff was negative the next morning all masks, gowns etc came off and I got a groovy private room for a weekend that my insurance has to pay for!

Pretty Cool I say!

Posted 8/3/2011 8:48 PM (GMT 0)
hi BelleyAche,

Sorry to hear you are in the hospital. My kidneys had a reaction to 5ASA (similar to Apriso) it is called Minimal Change Disease aka Nephrotic syndrome, whereby the filters in the kidney become fused together and do not filter proteins correctly and there is swelling in my legs and ankles and foamy urine. They found this through a urinalysis with a high level of proteins.

The good news about the minimal change disease is that it should go away after stopping the 5ASA and going on a course of prednisone.

I was undiagnosed for 7 years (found out through a kidney biopsy) I am close to remission but not there yet, but I think it's because I had the reaction for 7 years but no doc could figure it out.

I see a Nephrologist at Mass General Hospital. Let me know how it goes. Also if you have any questions about Kidney Disease I will try to help. There is a good support group at nephcure.org

Take care,
Beth
Posted 8/3/2011 8:48 PM (GMT 0)
how long were you on Apriso or any other 5ASA's?
Posted 8/3/2011 8:54 PM (GMT 0)
Beth,

Wow you just said exactly what the nephrologist said.. but I understand it when you say it! I was only on Apriso for 8 months but never had monitoring by my GI. My reg medical Dr was running routine labs and I had a very high creatnine level. I spent the weekend in the hospital but I am home now and had a follow up today. She put me on Prednisone which really helps with the UC and the removal of the protein.

Funny you mention swelling of ankles and foamy urine... as of today I have no foam but I did have... and I am still getting cankles. Other than that I had no symptoms at all would have never known that I was in acute kidney failure.

I am wondering what will be my course of action after I get off the Pred this time. They have found me a new GI, now allowing me to return to the previous one.

She said it will reverse itselt but it will take time. I am hopeful.
Thanks for your help and information this helps alot!
Posted 8/3/2011 9:07 PM (GMT 0)
Cankle's are the worst!!!! Thank goodness it's sandal weather! Plus the pred always made mine swell up more too, if you swell too much call the Doc, there are water pills you can take, they did not help me but have helped others.

Other than that the best thing for them is to eat a low salt diet I 'try' to do 1500mg a day and NO soy sauce (check w/Doc) this helps your kidneys by giving them less work to do processing all that salt and helps to keep swelling from pred and moonface. Keeping your feet up will help too.

Also, make sure you are drinking enough water.

I wish you a speedy recovery!
Posted 8/3/2011 9:21 PM (GMT 0)
I watch these metrics all the time.

What was your creatinine level ?

How bad was your blood protein urea ?

My creatinine is 1.6 and never goes down from there. Part of the reason for this is I used to eat a lot of protein and workout a lot and have little body fat. But I did switch to sulfasalazine last summer and am keeping an eye on it.
Posted 8/3/2011 9:27 PM (GMT 0)
Aguy,

I never had my blood checked by my GI. When I went on Apriso, 2 months later I had routine bloodwork at my reg Dr and my creatnine was normal. In all my followups with my GI they never did a kidney function test. 8 months later during another routine labwork for my thyroid my regular MD did a comprehensive panel and my creatnine got up to 3.20. Mine should be below 1.00. The one I had 8 months before was 0.40. So I was in acute kidney failure with only having 20% function. During my hospital stay with the fluids and prednisone and the stopping of Apriso my levels are slowly coming down. Nobody ever told me I had to be monitored. I now have a new GI.
Posted 8/4/2011 11:56 AM (GMT 0)
BelleyAche,

It's a good thing you have a good thorough GP.

I'm a little confused, which tests did they finally run to determine the kidney failure?

BTW, have you asked your doctor if taking rectal mesalamine drugs can also add to kidney failure? I know it isn't metabolized the same way, but you never know.

I'm curious because I've never heard anyone mention this?

Posted 8/4/2011 1:52 PM (GMT 0)
InSoFla,

Any type of 5ASA can cause this reaction. It is such a small percentage of people who have this caused from 5ASA, I met one person on-line he posted here and on the nephcure website, BelleyAche is the second. There are others but not from 5ASA's.

My first and second Nephrologist (in Boston at MA General) have only ever had one patient besides me who had this reaction and it is rare for adults to get this at all it is more common in children but still rare and having nothing at all to do w/the 5ASA's pretty much all of the time.

They typically find out people have this from a urinalysis which shows the that proteins in the urine are higher than normal, the kidneys are not keeping the proteins in the body as it should, the filters have become fused together.

There are also blood tests for BUN and creatinine, this tests shows how well your kidney function is overall. This disease effects everyone differently.

The symptoms of Minimal change disease are swollen ankles and foamy urine, plus others (if you google it you'll find info). If you are worried or think you may have this, your Dr. should have no problem doing a urine analysis and blood work. It was my current GI who caught this and said that this should have been part of the routine of my yearly check up.

Take care,
Beth
Posted 8/4/2011 5:07 PM (GMT 0)
That's awesome about the private room!!

My GI just tested my blood last week at my request for the first time since 2007. He said he doesn't routinely check kidneys since it is very, very rare to have any effect from the 5-ASAs, but he had no problem doing it at my request.
Posted 8/4/2011 5:47 PM (GMT 0)
Beth75,

Thanks so much for all the info on this. I didn't realize that all 5asa's can cause this problem.

Now I understand why when I went to my GP about a month ago, he had me do an urinanalysis and other testing.

Thank again.


 

Posted 8/4/2011 5:50 PM (GMT 0)
Do any of you that have had kidney problems from 5asa also have high BP or blood sugar issues?
Posted 8/4/2011 8:00 PM (GMT 0)
AZY - my bp was typically 120/70. I take bp meds to reduce my blood pressure so that my kidneys do not have to work as hard (like an 8cyl engine only running on 4cyl) it ranges from 110/65 to 95/55 depending on my salt/water intake.

I only had higher blood sugar while on prednisone.

HTH!
Posted 8/4/2011 10:43 PM (GMT 0)
Mine was found in a comprehensive metabolic panel (blood), not urine. Urine did show some white blood cells which they thought was an infection but it wasn't, it was protein. My regular GI checks my thyroid, cholesterol and comprehensive panel every 6 months because I do not have a thyroid. and take Synthroid.   The proteins showed up in the creatnine level. No symptoms at all.

Also my blood pressure runs on the low side, I am a petite person, never had blood pressure or cholesterol problems.  My sugar has always been normal and have had no instances of kidney issues either.   This took me by surprise because had I not just taken the action to go for my normal routine bloodwork I may have ended up in end renal failure. 


My levels are slowly coming down, waiting on the latest tests from yesterday now. I still have the foamy urine but today no cankles.



Everyone on these meds should def get tested regularly.

Thanks to Beth for being so informative about this issue, what would we do without each other?  :)

Posted 8/5/2011 1:15 AM (GMT 0)

BelleyAche said...
Aguy,

I never had my blood checked by my GI. When I went on Apriso, 2 months later I had routine bloodwork at my reg Dr and my creatnine was normal. In all my followups with my GI they never did a kidney function test. 8 months later during another routine labwork for my thyroid my regular MD did a comprehensive panel and my creatnine got up to 3.20. Mine should be below 1.00. The one I had 8 months before was 0.40. So I was in acute kidney failure with only having 20% function. During my hospital stay with the fluids and prednisone and the stopping of Apriso my levels are slowly coming down. Nobody ever told me I had to be monitored. I now have a new GI.

3.2 is seriously scary. I am worried about 1.2 1.4 1.6 but that trend took years, seems a solid 1.6 no matter what I do now. 3.2 would have me completely freaked out.

I regularily pull bloodwork either out of pocket at directlabs.com or through doctors but insurance makes me pay half and they are always short panels. directlabs has massive bundles on sale monthly.

Glad you finally got it figured out.
Posted 8/5/2011 2:19 AM (GMT 0)
Well yes 3.20 is scary but good thing I didn't know it at the time. It only took 8 months too. I just reacted that doesn't mean everyone else will. When I left the hosp I was 2.7. I had blood drawn yesterday and am waiting on those results... but today I am not swelling and the foam seems better.

I will not know about my future UC treatment for a few weeks when I see my new GI. Until then the kidney specialist has me on Pred which takes care of both issues so for now I am ok with it. I feel fine, normal stools, no pain, no blood, no mucos, eating great on Pred.. the downside is the lack of sleep, but I have stuff for that too.

Yeah.. you just never know!
Posted 8/6/2011 8:50 AM (GMT 0)
I wanted to give anyone interested an update:

I received my creatinine level today, it is now 2.25 so going down nicely after removal of Apriso.
My hemoglobin is low due to no absorbtion of B12 in my cecum according to the Dr and the fluids in the hospital and prednisone depletes red blood cells. I am on folic acid and getting B12 shots (which I highly recommend).

Feeling good and hoping for full recovery from the kidney failure.
Posted 8/6/2011 4:10 PM (GMT 0)
Definitely scary stuff, but great to hear you're improving nicely.


q
Posted 8/7/2011 1:35 PM (GMT 0)
glad you are doing better BelleyAche.  Sounds like the pred is really helping you! 
Posted 8/9/2011 11:05 AM (GMT 0)
Thanks, it really is. I said on another post that the Sleep deprivation, the huge appetite, the loss of my facial wrinkles, my happy personality, feeling of well being, having 2 perfectly formed stools a day.... it's all worth it. that's not to say when I go off of it, I go right back to HELL... but for now, I am enjoying this wonderful feeling of a normal life (and eating eating eating) and love it!

My levels continue to come back to normal ranges and my results of yesterday were all negative.
Thanks to all concerned. :)

Belley
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