Official Mayo diagnosis

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/26/2010 4:03 PM (GMT -7)   
It Crohn's and the bile acid malabsorbtion...

The colonoscopy showed crohn's in the terminal ileum and ulceration of the small bowel.. the ct scan showed chronic inflammation indicating crohn's. This dr seemed to have no doubt. He wants me back on the colestipol for the bile acid malabsortion but wants me to decide if I want to start on a drug like imuran.. he does not think the 5-asa's work ( I know.. just his opinion) so he doesn't use them. He does not think my crohns is bad enough for remicade or humira.. he suggested I just wait and see but that concerns me. I told him how bad the joint pain is and that seems to suggest starting on the immunomodulators... your thoughts... I know its my decision but I do value your thoughts.. you have been through this and have a better understanding.. also.. cost of a drug like imuran? We are calling our insurance company in the morning.. just curious

All in all.. this was a great experience.. everyone we dealt with at Mayo was so compassionate .. so kind.. really thorough..they know their stuff and don't mess around. The hotel was great, parking was easy.. their cafeteria was my only complaint.. but geez.. thats tiny...we took our own food ..

Ok.. so I guess its official.. time to move to the next chapter and deal with this day by day...thank you , thank you , thank you !!!!!!! thank you for helping me and supporting me through the last couple of days..it was an experience.
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- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
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.


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 5/26/2010 4:20 PM (GMT -7)   
It's good to hear you have a solid diagnosis. about the price of Imuran, when I was on it, it wasn't too bad. I want to say around $40/month for 4.5 tablets per day (very high dosage).
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 5/26/2010 7:35 PM (GMT -7)   
I wonder how they decide if the inflammation is chronic on the ct scan? I was just curious. I am somewhat new to all of this myself. I hope you can decide soon what you want to do. My doc said that often the inflammation in the colon causes joint pains. I have other issues and take plaquenil for my joint pain and fatigue. Good luck.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 5/26/2010 11:51 PM (GMT -7)   
I'd personally wait on the biologicals, Remicade etc. unless the joint pain affects your quality of life so bad you have to try something. I waited as long as I could, when I couldn't grip things anymore I started remicade and it worked wonders but after about 16 months has been less effective but still much better than without. So I'm of course worried it will continue to become less and less effective. 3 years now and still getting relief though.
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 early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/27/2010 2:39 AM (GMT -7)   
There is a generic for Imuran if that is any consolation on price. By all means I would try it. I did and am ever so glad I did! You need SOMETHING to work on that inflammation NOW whilst the Imuran slowly takes effect.

I started on Imuran thru the U of Michigan ImmunoSuppressant monitoring program they had/have and they suggested Entocort. I opted for Cipro instead. (Cipro has its own side effects risk). So, Imuran and Cipro for 5 months and then just Imuran and Pentasa ever since.

I know that the pros aren't all that fond of mesalamines anymore - but - I am one of the fortunates that DOES benefit from Pentasa. If I quit taking Pentasa for awhile, the Imuran can't quite cut the mustard and I get some warning mini flares. But the Pentasa couldn't do it on its own. I need the combination of Imuran AND Pentasa.

So WHO is your gastro at Mayo?
My computer says I need to upgrade my brain to be compatible with its new software.


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/27/2010 3:19 AM (GMT -7)   
 
My son has had a similar experience to CrohnieToo. Was put on azathioprine(immuran)  entecort and pentasa. Weaned of the entecort and then told to drop the pentasa, within a couple of weeks was back on the pentasa(along with azathioprine) and this appears to be what is working for him. 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/27/2010 4:41 AM (GMT -7)   
June,
Glad you finally got a confirmed dx. Plus I would not worry about the meds, as it can take months for them to get to an effective dose in your body.
Take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/27/2010 5:29 AM (GMT -7)   
I saw Dr. Samuels and Dr. Loftus...

I admit I was surprised when he told me his feelings on Pentasa..especially after hearing all the good things that all of you have to say about asacol and pentasa...and I am concerned about what I do for the next three months as I wait for this to work. I have been on prednisone and I am finishing that up now..

but having a definite diagnosis has been a relief..I hate that its crohn's but being in limbo was terrible.. having drs second guess themselves left me in the dark.. but now.. I have crohn's.. and I have decisions to make..but I feel like I am moving forward.. does that make sense?
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- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
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.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/27/2010 1:00 PM (GMT -7)   
I'm so glad you finally have a diagnosis, but I'm sorry its CD and not something more easily treated and done with.

I was on Pentasa for years along with 6MP (sister drug to Imuran). I'm not sure the Pentasa did much for me, but when I was accidentally taken off it in the hospital (Doctor forgot to order it), my D got much better. The 6MP has a generic that is relatively cheap so that may be an option for you. Keep us posted please.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/27/2010 2:24 PM (GMT -7)   
I'm not familiar w/Dr Samuels but I have heard lots of good things about Dr Loftus. My Mayo gastro is Dr Tremaine.
My computer says I need to upgrade my brain to be compatible with its new software.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 5/27/2010 4:50 PM (GMT -7)   
My GI does not prescribe Pentasa or Asacol for CD in the TI. He does not feel there is any benefit and that studies have shown that mucosal healing does not occur by using them. He used Entocort and likes to get his patients on Imuran or 6MP. I took Imuran for 6 years and at one point was off all biologic meds for over a year and a half. During the time, my intestines remained in remission. I cannot say that Imuran caused the remission because I started Remicade at the same time as the Imuran.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/28/2010 2:05 PM (GMT -7)   
We are all so different. I know the leading gastros don't have much respect for mesalamine anymore, but let me tell you, I'm one of the fortunates it DOES work for. If I cut my dose from 16 of the 250 mg capsules of Pentasa a day to 8 a day (along w/maintaining my Imuran dose) w/in 2-3 months maximum I'm in trouble. If I get back on the full dose of Pentasa fast enough I can avoid having to add Entocort to get things under control again.
My computer says I need to upgrade my brain to be compatible with its new software.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/28/2010 2:14 PM (GMT -7)   
I wonder what happened to make them back off of Pentasa when it clearly is helping so many. Is it the location of the crohn's?

My local dr is on vacation so I can't start anything until next week. The mayo gi said I will have to be monitored so he wants to speak to my local gi first. Sounds like they will do the prednisone again.. third time... and the imuran.. that way the pred will help with my joint pain until the imuran kicks in. I am in so much freaking joint pain today.. and my insides hurt... I never do well after a colonoscopy... but just have to hang on until next week. Just rest this weekend.. right? I can start the colestipol though.. so maybe that will help with the urgency factor.

what a week it has been.....
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- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
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.


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 5/29/2010 3:13 AM (GMT -7)   
Hey june,
My GI wanted me to start imuran, I asked him if I could start on a 5ASA first. He agreed and I have recently started pentasa. Yet to see if it will work or not, I am having another scope on the 24 June. All of these long term meds are supposed to take some months to really work. However he is keen for me to graduate to imuran should things not look to be settling in the next couple of months. I'm not sure of the price of imuran where you are, but "down under" the price of pentasa is about $300 for 100 sachets. Fortunatley I can have a rebate and this brings the price down to $30 for the same amount. My GI said that the pentasa targets the small bowel and terminal ileum in particular. It does have some effect on the large colon. I am not sure why your doc says 5asa doesnt work, but I think every doc. has had there own experiences in dealing with patients and probably go with the majority rules type of thing. My doc says he wasnt a fan of imuran for years, now has changed his mind because he saw many children thrive and grow well who had CD. The only concern he has with it, is the increase in cancer chances. Although he says that badly treated CD can still be fatal, however taking something like imuran should get on top of it and that cancer can be detected early with us, especially if you keep having regular scopes. Anyway, this is jus what he said to me. I hope you find some success.
Good luck to you.
Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/29/2010 7:33 AM (GMT -7)   
I am another one successfully maintained on a 5ASA's. I have been in remission on just Asacol for the past five years. And my Crohns is located in the TI and Cecum area. If I don't take this med, I would get sick quickly. I had the same response as Zanne when on Pentasa, it gave me more D, but the Asacol has worked great. If one 5ASA doesn't work for you, maybe another will. 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"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/29/2010 8:28 AM (GMT -7)   
The thing is, Pentasa wasn't quite cutting the mustard, it NEEDED the "help" of the Imuran. Conversely, it has also become apparent that the Imuran alone wasn't quite cutting the mustard w/o the help of the Pentasa. At least in my personal situation. We all vary.

The leading gastro researchers are "high" on the biologics since they see some dramatic results very quickly. More and more are leaning towards treating "from the top down therapies" rather than treating "from the bottom up therapies".

AND, keep in mind, that MOST of these leading researchers have had a hand in developing or trialing these biologics and they and their insitutions often (usually) have an interest in and benefit from the sales of these biologics. There is virtually no "independent" medical research done in the USA today and hasn't been for years, probably since in late 1940s, early 1950s.

CCFA let their website languish for years w/very little new information, etc, EXCEPT for their Ask the Specialist forum and that due mostly to the dedication of one semi-retired gastro. Who knows what sparked CCFA's renewed interest in the CCFA website? But take note of who is on the Board of Directors. MONEY is NEEDED for research. Follow the money. Where does MOST of the money for research come from?

This is NOT condemning CCFA nor our leading IBD researchers. It is just a fact of life in this country. Effective research can NOT be conducted w/o money.

Have you ever checked out the salaries and perks of your favorite charity's top officers? Their fund raising costs? What percentage of donated monies actually trickles down to the cause? I, for one, no longer donate to charities that utilize professional fund raisers which more and more charities, especially the larger ones, do. More of the donated funds go to the fund raiser than to the charity and even less to the cause.
My computer says I need to upgrade my brain to be compatible with its new software.

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