Home and resting- questions and thank you!

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/4/2010 6:13 PM (GMT -7)   
So I got home this afternoon. My pancreas is good. My crohn's is bad and flaring. I am in a lot of pain and still having regular diarrhea. I have a follow up appointment at the end of this week. At that time, he would like to discuss Remicade and Humira. I don't have any idea where our insurance stands on either treatment. I am wondering if it would be worth it for me to bring LDN to his attention. I am really asking for personal opinions...I felt in talking with him that I am running out of options. Do you agree?


I do want to take this time to thank you all for getting me through a very difficult time. Having a place to come.. to vent .. to cry...it was so helpful when I was feeling so down in the hospital. I am glad to be home and really hope I do not return for a third visit.
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. 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 7/4/2010 8:02 PM (GMT -7)   
Hey:  Welcome home!!  Glad you are on the mend, now just practice walking past anything that is out of kilter (its somewhat akin to "just say no") and finish recovering.  I think the LDN is a grand idea from what I've read, don't have much personal experience with it but what the heck . . . what do you have left to loose?  Bowel?  Seems like a good synergistic med to tack on with the big guns.  If the insurance company gives ya grief tell them you would be happy to be hospitalized on a regular basis. . . .
 
I too am gonna hit the gi dude up with the LDN suggestion at our next ever so therapeutic encounter (tongue in cheek) . . .
 
Happy, 4th . . .almost 5th!  and welcome home!
Barb



Symptoms since Jan 2009, Dx UC vs crohns May 2010 but probably small bowel Crohn's dz, biopsies all "normal"

Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin

When the people fear their government, there is tyranny; when the government fears the people, there is liberty. Thomas Jefferson


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/4/2010 9:06 PM (GMT -7)   
It always takes me about a week to get back to normal after I get out so take it easy and REST! You don't want to go back anytime soon.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 7/5/2010 12:55 AM (GMT -7)   
Glad things are improving for you.
Have no experience with LDN but have been reading loads on it lately and think it is worth a go.

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 7/5/2010 3:19 AM (GMT -7)   
So glad to hear you're home. Like Tulip says ... take it easy!
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 7/5/2010 6:12 AM (GMT -7)   
LDN works for some. In your case, i'd just go for the remicade. I wish i never did it.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/5/2010 8:29 AM (GMT -7)   
LDN is a fairly new option, and does not work for all. I think you are too new with this Crohns thing and I think you too need to think about the Remicade. Many have had great results from it and think you should try it. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/5/2010 4:33 PM (GMT -7)   
I would think about Remicade if my insurance covers most of it but there is no way we can afford the cost if it is hundreds of dollars....and I am nervous about side effects... I am skittish...this whole experience has been so fast.. going through all these medications so fast...even my dr doesn't understand why I reject them all.. I have been researching all day and am overwhelmed. The 50mg of prednisone seems to have slowed me down, still have pain.. not sure I understand why the pain is so severe...

confused
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. 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 7/5/2010 5:09 PM (GMT -7)   
junerainbow:  Go to the post regarding remicaide and pretreatment.  Its food for thought and also interesting.  when you think about an immune suppressent drug -some people might have an immune system that over reacts first by inflamming organs of metablism and secondarily joints - parts of the body that are highly vascularized and/or  to a degree of containment (ie joints) that brings pain from swelling pushing against boundaries.  Any response to trauma (remicade being a source of trauma) would result in a rushing of blood flow to that area that brings in specific blood componets to trigger healing and results in swelling.  A way to minimize an "allergic" response then would be high dose benadryl and the next big wammie in swelling is the steroid -prednisone.  Prednisone has significantly more side effects -metabolism, bone loss, vascular changes etc.  It's kinda interesting and definately food for thought as well as discussions with treating GI's.  M adding this to my "to do" list.  At least, this is how I think about it, subject to change in reading other posts and some literature tonight! 
 
Glad you are on the mend, take care. 



Symptoms since Jan 2009, Dx UC vs crohns May 2010 but probably small bowel Crohn's dz, biopsies all "normal"

Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin

When the people fear their government, there is tyranny; when the government fears the people, there is liberty. Thomas Jefferson


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/5/2010 6:26 PM (GMT -7)   
Thanks Grumpygi... I will do that now. Thanks for explaining that. I see you are on Entocort... I had asked about that but my gi seems to be against that as a long term treatment. I was thinking about asking if I can do that for now until I make a decision. Do you feel that the entocort has helped 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. 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 7/5/2010 7:30 PM (GMT -7)   
Hi,  I think Entocort has helped me a bunch.  The GI dude put me on it ('member I'm only recently diagnosed) the end of April for a month.  When I went in to see him for follow up he wrote a script out for 3 months and in reading these message boards I kinda freaked, called the office -he was out of town but chatted with his nurse.  Not that he called me back re concerns but I tried to go off (sheepish face . . .cold turkey) Lasted about 3-4 days before the agony and massive issues resumed.  So yes, it has helped me a bunch -took a full week for the weird mucous and massive D to go away.  So, I am back to twice a day dosing and mulling over the next step, being good with calcium intake and hoping nothing else bad happens besides the hunger - that settled down after about 6 weeks when I stopped short of eating everything down to and including paint chips off of the wall. 
 
We have pretty good insurance and so it didn't cost me a bundle but that can also be an issue.  The drug is relatively new and pretty expensive but GI offices have coupons to help defray the out of pocket co-pays if you need it.  
 
Its kinda interesting the mental gymnastics that one's mind can leap through.  Cause I felt better was pretty convienced it was all either resolved or a mis-diagnosis.  Ya know, one word out of 3 correct (irritable in the irritable bowel disease) diagnosis.   Its interesting that some people that post on this web site have been on it for a couple of years -guess this would be better than regular big guns prednisone but still a bit freaky. 
 
Take care, hope it helps.  Wonder why your GI is reluctant, seems this drug helps control the big symptoms while supportive therapies can get started and built up to maintenance on something else.  This GI dude did mention starting one of the TNF drugs but I was kinda nervous about starting big gun therapy and so he put me on Liadla -so my symptoms and pain are hugely better between the two.  IDK -this all could make my ears bleed from too much thinking. 
 
Best always, barb



Symptoms since Jan 2009, Dx UC vs crohns May 2010 but probably small bowel Crohn's dz, biopsies all "normal"

Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin

When the people fear their government, there is tyranny; when the government fears the people, there is liberty. Thomas Jefferson


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 7/6/2010 12:01 AM (GMT -7)   
Welcome home, continue to get well!
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 7/6/2010 4:57 AM (GMT -7)   
Thanks everyone... and Barb.. thank you...

I think I may push to go on Entocort until I do more research. My thinking is that I respond well to prednisone which obviously I have to get off of. So maybe it reasons I would do well on entocort? My gi does not like steroids at all. He thinks entocort is just a light version of prednisone therefore I am hurting myself. He would rather put me on remicade. In my mind, that seems like a very big gun and if that doesn't work, than what. I have been reading a ton of posts on here concerning remicade, humira , cymzia, ldn...I just don't know. I know that I am not severe enough for surgery though sometimes that feels like that would be easier.

yes.. my brain hurts from all of this thinking... =)
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. 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.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 7/6/2010 5:45 AM (GMT -7)   
Your doctor is right about Entocort. Like all steroids, it is appropriate for short-term use, but is no more effective than a placebo after 3 to 6 months. It is not a maintenance therapy. If you are worried about drug side effects, you could try enteral nutrition. It is a clinically tested, dietary treatment for Crohn's disease that has been around for 40 years and has been validated in published clinical trials. Doctors in the US don't tend to offer it much, as they think it too difficult to ask patients to stick with a liquid diet for a few weeks to induce remission, but it is a standard therapy in Europe and Canada. If you are going to respond to it, you generally see substantial improvement within the first 10 days, so it can get you feeling better quickly, like steroids, but without the steroid side effects. Just a thought.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/6/2010 10:13 AM (GMT -7)   

My GI was also really reluctant to put me on Entocort, but he did and I stayed on for about 6 months.  This was primarily to address joint pain in my hands - on the theory that bowel inflammation was causing the joint pain and redness.  It definitely worked, but after a few months we needed another approach and I started sulfasalazine (on top of the pentasa I'd never stopped taking).  I weaned off the entocort and built up the sulfasalazine - there was one week during this transition where my hands hurt but other than that I've been pain-free (in my hands) for almost a year.  What a blessing.

On the other hand, now I have knee pain and arthritic changes in my sacroiliac joint, so it's time for another meeting with the GI to figure out what to do.  All this time my bowel symptoms have been mild to [rarely] moderate.

I think entocort is an excellent option to buy some time for you to heal, June, and to think about other meds.  And an enteral diet is also a great idea to get you over this nasty hump.

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