Update on situation

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/14/2010 4:41 PM (GMT -7)   
Well I made it home a week and so far I am not back in the hospital, though yesterday pain sent me back to the doctor for more blood tests. For a moment, doc thought he was readmitting me, thankfully my pancreas numbers came back good so off the hook on that one.

As for my crohns, I am in a holding pattern. I saw the dr last friday and he was hesitant to start me on anything until my pancreas had completely healed. I go back this friday to talk about the next treatment. His advice was this. Since I am nervous about remicade and humira, he wonders if it would be better to start with Entocort after tapering off of Prednisone. Continue with colestipol and than when I am stable to switch to Pentasa for long term management. If this course does not work, than he wants to start Remicade, his choice. He said he has better response with that than humira. He truly is hoping he can stabilize me with just these meds before he pulls out the big guns because though my symptoms are bad, the tests are showing that there is not severe crohn's going on. He is honestly confused by my crohn's, by my reactions and side affects, by my severe joint pain..he believes me but has not seen a case like me... am I really that unusual?

I seem to be having much more pain this time , especially since the enema. And now the pain is starting to feel like the pancreatitis which does alarm me. I am still new to all of this... though the last 7 months have felt like a freaking lifetime. I am just wishing to feel somewhat better and get a treatment plan that works for a little bit at least.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/14/2010 5:38 PM (GMT -7)   
junerainbow:  Glad you are home - wish you were feeling better.  Its sad day when you have to measure your life with in or out of the hospital.  Pray this thing turns around for you as well as your family.  Take care of yourself and be blessed.  Barb
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/14/2010 5:41 PM (GMT -7)   
I'm glad to hear your out of the hospital and your numbers are looking good. I hope the Entocort does the job and you can get on the Pentasa. You have been an extremely strong person to make it through the last 7 months. Wishing you the very best.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 7/14/2010 6:21 PM (GMT -7)   
Hello, I can understand how you feel about Remicaid and Humira. I have been suffering fron Crohn's for 3 years and the last year or so my symtoms have got worse. I have only been on Asacol and Entocort but the entocort made me use the bathroom much more and didn't help me at all so I was taken off it. The doctors in the clinic seem a little confused because my blood work seems to have been good except my iron levels have seemed to drop. They always ask if there is blood in my D but there isn't so I don't know why my iron is so low lately. I don't have pain when they press on my stomach, just a lot of sounds and always running to the bathroom (and a lot of weight loss). Now I have rectal problems so they said I HAVE to take remicaid or humira. They prefer me to take remicaid but because I freeked out as soon as they said it the doctor said if I wanted I could take Humira. They put me on two antibiotcs for 2 weeks and took a TB test and then I go back on he 27th to start Humira. I put a post up and because of the rectal problems the better choice seems like it would be better for me to start Remicaid so I will sit here for the next two weeks freaking out till I make my decision and then freak out once I am on the medication until I see how my body reacts to it. I hope and pray everything works out for you.

God Bless
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Remicaid or Humira when I go back to GI July 27th.....I'm so scared :-(
Seton drain was put in on May 4, 2010....Two more Seton drains put in June 15th :-(
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 7/15/2010 1:26 AM (GMT -7)   
June my GI also doesn't understand how a few small lesions could be causing me so much trouble. With blockages averaging 2 a month and side effects like fatigue, pain every day in varying degrees from low to severe during blockages. I also have joint pain and the only reason it's not severe anymore is because I'm on remicade. The two of us sound somewhat similar and are confusing two different Dr.s. Your not alone, I'm totally frustrated for sure. Rob
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/15/2010 5:54 AM (GMT -7)   
thanks so much...it really does get frustrating when the doctor keeps telling you that you aren't bad but yet I have been so sick for seven months..lost my job.. have missed countless things that my children have been in...and been hospitalized twice... I just look at him ... I am just as confused as he is.. I am so sorry Rob that you are here too...we all seem so different when it comes to crohn's...and it would seem to me that you can't just go by the pictures or the tests...that symptoms have to play a role too.

i love this board... thank you.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

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