Update on my daughter

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lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 2/11/2008 4:35 PM (GMT -7)   
First, I want to thank all of you for your input.  I can't tell you how helpful all of you have been already.  A special thanks to Sammies......She made it throught he weekend on a liquid diet.  Chicken broth was the only thing she seemed to keep down.  We went to her Dr. first thing this morning.  We had a small delay since she vomited all over herself on the way there.  At any rate, He wants her to continue the liquid diet for now.  They did blood work to check her pancreas amongst other counts.  I am still quite new to all of this so I don't know what all of the tests are for but the lab included:  cbc w/ diff & platelets, Lipase, multichem (cmp, alt & ast) and prometheus thlopurine metabolites - 6 mp 150mg.  He is scheduling another endo & col.  They should be calling tomorrow with the first available date.  I did ask about her last sm. bow. fol. through......he said it was abnormal but the majority of problems were in the ileum.  He said there were significant ulcerations throughout her tract shown in her last endo & col. 
Again, thank you all so much.  It is an amazing feeling to know there are all of you dealing with similar issues and that you all have so many answers for us.  I will update with any new info as I get it.
Love & Laughter to all of you!!!!!!!
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/11/2008 6:02 PM (GMT -7)   
Thank you for updating us. Now that I looked at the list of her meds, I am wondering if her nausea and vomiting might be due in part to the 6 MP. Some people have significant problems with 6 MP or Imuran due to the nausea and vomiting. I'm glad that he ordered the Prometheus thlopurine level. Also, many, many people including myself, have to take their 6MP or Imuran with food or we get very nauseous. Since she is on a liquid diet, this might be contributing to the nausea/vomiting problem.

Thank you for your kind words. Like you, I think this is a very special place....
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/11/2008 6:37 PM (GMT -7)   
I sure hope she starts to feel better soon. Thanks for updating us. I was thinking of you both today. You've had a rough ride of it lately.

Good luck and keep us updated,

Bev

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/11/2008 7:01 PM (GMT -7)   
Thanks for the update! When the lab tests come in, you can ask for a copy of them...you won't understand much, but you can at least see for yourself where the ranges are normal, or not.
 
When I first looked at my daughter's labs almost two years ago and asked why the RDW was higher than normal, the GI just shrugged. So I wrongly assumed it was no big deal.
 
Now I know that, for my daughter, higher than normal RDW is one of many signs of iron deficiency.
 
So now I routinely ask for copies of lab tests and then check them against info on the following web site:
 
 
Knowledge is power.

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 2/12/2008 12:25 AM (GMT -7)   

I myself cannot take 6mp.  i was so sick, if was able to load my pistol i would have shot myself.  It wasn't that bad.  but it was bad.  I hope all goes well with your daughter. I will be praying for the little. one,  heck for the whole family. 

 

Remember!!!!!!  Treat People the way you want to be Treated.  yeah


ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/13/2008 7:39 AM (GMT -7)   
My daughter wasn't able to handle the 6MP either. She's now on Remicade and has been for a few years. Between the Remicade and the fantastic care by her doctor, David Rubin, she's doing well thankfully.

lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 2/13/2008 1:53 PM (GMT -7)   
Thanks for the input. I spoke to the nurse this afternoon, so far tests have come back within normal range. Other than the billy rubin sp? that was elevated but they aren't to concerned. I don't really know what that is and when I asked she didn't either. She said it was something metabolic?! They are waiting on the 6 mp levels still which may be a few days. Her 6mp levels have stayed very low, that is why they keep increasing it. Would adding 50 mg a day bring her levels high after them barely reading? They have scheduled her endo and col. for the 21 st. She seems to still be tolerating a liquid diet much better than solids.
Sorry for being so needy. You all have been a great help. It is amazing that when I was diagnosed with colitis in 2001, I never researched anything. I went to the dr's after being certain I must have developed an allergy to food period. I accepted the diagnosis - had no idea what it meant other than it was in my colon and caused severe D & bleeding, denied any meds, since I couldn't afford them and went on my way. In time I discovered what were my danger foods. I am very fortunate to be able to keep it under control by avoiding those foods. I have never figured out how to control my worst enemy which is stress. Now that my child has been diagnosed w/ crohn's I'm desperate to gain as much knowledge as I can, reading, researching, and reaching out to anyone that can offer the smallest input.
I must say that I feel addicted to this site......Thanks to all!!!!
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 2/13/2008 3:55 PM (GMT -7)   
An elevated billirubin (jaundice) indicates that your daughter is either having an unusual number of red blood cells dying or her liver is not handling the red cells normally. If she has inflamation and or is reacting badly to medication that could explain slightly elevated results. If her skin or eyes turn yellow make sure you notify the doctor immediately.
Sj

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/13/2008 7:57 PM (GMT -7)   
A lot has changed since 2001. There is so much more information available now on the Internet, thank goodness:)

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/13/2008 9:44 PM (GMT -7)   
I'm wondering if 6mp can affect the liver and if the billrubin levels are a possible sign of this.
Maybe you should double check with the doc?

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/13/2008 10:14 PM (GMT -7)   
Glad the liquid diet is working well. It's boring but it sure does help. Things like popsicles, ices, slushies can help vary things but monitor her reaction to the cold food. It can trigger D for some folks. Has the doc allowed her to try ensure yet? This last flare, I had to wait quite a while before I could do ensure but when I could take it, my energy was so much better. Your daughter is in my thoughts.

As for the 6mp, I'm thinking they're giving her more b/c things are working well. It does push the white blood count down b/c it's an autoimmune drug. If she reacts well to it, the monthly blood work will eventually become every other and then every 3 months. Very important to check liver as folks have mentioned in previous posts. Also to look out for rashes or infections. Report any such things to the doc right away.

I had terrific luck with 6mp for years at a very low dose of 50 mgs. I was never able to take more than 75mgs as my RBC and WBC would fall too low. While it had been a magic bullet for me, I had to go off of 6mp very quickly this fall. My white blood count plummeted --specifically my neutrophils. And the metabolic/enzyme tests showed that I was no longer absorbing it. Sigh. . .

I am thinking of you and your daughter! I hope the 6mp works for her.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 2/15/2008 6:57 PM (GMT -7)   
Just wanted to share a blessing with all of you.....I hope I'm not breaking any rules by posting this, I hope it may bring joy to all of you as it did for me. My daughter told me the other night when she went to bed, she was feeling really sick and very scared so she had a good talk with someone above the doctor's and that he assured her she is going to be fine. She said "Mom, don't worry everything is going to fine and I know it". I can't tell you the feeling that came over me. She is still feeling nauseous but hasn't vomited in 3 days, she is still having pains, the big D (no blood right now) and is very tired. Her attitude & outlook have changed and that in itself is a blessing. If this is her outlook then surely it should be mine!
She is continuing the liquid diet and seems to be doing okay with that. We haven't gotten the results of her 6mp levels back but as I said before she is scheduled the 21st for the endo & col.
Love & Laughter to all of you!
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/15/2008 11:19 PM (GMT -7)   
Thanks. It's good to hear that she is better.   cool
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