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Crohn's Disease Forum » Your Story » Now at Mayo after 2 years of agony


11-13-2013, 03:49 PM   #1
Michelley
 
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Now at Mayo after 2 years of agony

I wanted to finally post here after a few years of reading and researching on this helpful forum. I'm literally sitting in a lobby at Mayo Clinic in Rochester, MN waiting for the schedule to open up for 4 tests; MRI, Endoscopy with ultrasound, colonoscopy, and a straight up endoscopy. I met with Dr Edward Loftus on Tuesday and we are very impressed with his thoroughness, his warm bedside manner, his keen intelligence (without the arrogance, thank you!). I was being treated at Stanford Hospital since January with the "expert" who put me on 6MP which sent my liver into toxicity. Thankfully my great local GI caught it and pulled the dose down and referred me to Mayo and UCSF. I have been on Beudesonide for 2 years (horrible side effects), Pentasa, Creon and Prilosec for GERD, in addition to the 6MP. Stanford diagnosed me with Auto Immune Enteropathy of the small bowel. A very rare IBD. We are at Mayo to determine if I do indeed have AIE or if I have A-typical Crohn's. I have lost 20lbs this past two years, was hospitalized in June at Stanford for a week with a total inability to digest anything, even water could not be absorbed. It has been a horrible journey since the sudden onset in November 2011. I am conservatively hopeful Mayo will get down to the root issue and find a protocol my body can handle. Dr Loftus mentioned Remicade and Humira. I am not excited about either of these medication. Lots of questions!! I hope to find support here with all of you. Thank you in advance!
11-13-2013, 04:45 PM   #2
valleysangel92
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Hello welcome to the forum, I'm sorry to hear of what youve been going through, but I am so glad you've found us .

I hope you can get your tests scheduled soon and you can start getting some answers and feeling better. Do you mind if i ask what your current symptoms are?

If you have any questions you think we can help you with then please feel free to ask, as im sure you've seen, everyone here is ready to help and very friendly, we will always do our best to help and answer your queries, and you will never be judged. We will always try to support you and we all understand what IBD can be like to live with.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
11-18-2013, 12:24 PM   #3
Michelley
 
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Thank you Valleysangel92 for responding to my post. It got busy at Mayo and we just got back home last night. My symptoms have been, diarrhea or constipation, extreme bloating, intense abdominal pain, cramping, inability to digest fats, 20lbs weight loss. On top of that I am having side effects of long term use of high dose budesonide: insomnia, irritability, edema, headaches, anxiety. The primary care physician I had before I fired him suggested Ambien for insomnia and an anti anxiety to combat the side effect of the steroids. Oh my goodness! More medication is not a solution.

Since my last post I found out I do not have Auto Immune Enteropathy of the small bowel. Confirmed by blood test. So I have been misdiagnosed at Stanford and not put on the right combination of medications. I am waiting for the pathology report to come in tomorrow to confirm Crohn's; However, Mayo said it may come back negative because of the 6MP and Budesonide and a negative result does not mean I do not have Crohn's.

I just want to get better and get at least a little of my life back! We were very impressed with Mayo and wish we would have been referred to them when I first became terribly ill in 2011. Since my hospitalization in June of this year we got a whole new medical team and we feel very very good about each doctor. They have all been very thorough, intelligent, caring and collaborative.

Thanks to this forum I do not feel so isolated and alone with this. Thanks everyone for posting your stories and giving me some hope!
11-18-2013, 12:59 PM   #4
LibraryGal
 
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Sorry you are having such a difficult time. However, you couldn't be in better hands than Mayo Clinic. I was sent there some years back for a second opinion for treatment options and left very impressed and wishing I lived closer to Mayo. Sounds like you have found a medical team that will take good care of you. Wishing you a much healthier future! Take care.
Melissa
11-20-2013, 07:57 PM   #5
kimmidwife
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Hi and welcome to the forum. Glad to hear you are being seen at Mayo clinic. Have heard wonderful things about them. Look forward to hearing more about how it goes with them.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-21-2013, 01:05 PM   #6
Michelley
 
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Thank you Kimmidwife. Just got the call back from Mayo. Crohn's for sure though it is an A-typical case. I will be starting Humira as soon as it get's approved by our insurance company. I'm to stay on 6MP @ 25mg, Budesonide 3mg every other day after 3 weeks on Humira, then hopefully come off Budesonide completely by late Feb 2014. YAY! I'm a bit concerned about the Humira (pain, side effects). Thanks again to everyone on this forum for the helpful stories and information!
01-14-2014, 08:51 PM   #7
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Just contacted the Mayo in Rochester for my husband, who has Autoimmune Enteropathy (diagnosed in 2007). He has been on Budesonide/Entocort for 6 and a half years now and has osteoperosis at the tender age of 39. After moving away from LA and the great docs at Cedars Sinai, we are in Utah and not experiencing the same care. They are attempting to take him off of steroids and have tried Imuran, as well as Cimzia, and now Humira. He had a severe episode last week and lost 10 lbs he didn't have to lose. Glad your experience there was good and that you finally got diagnosed and matched with a correct treatment plan. Keeping our fingers crossed that they can help him too.
01-14-2014, 09:54 PM   #8
kimmidwife
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Welcome! I hope they give you some good answers.
01-14-2014, 10:27 PM   #9
Michelley
 
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Hi Wife of AIE,

I'm sorry to hear of your husbands condition. I am very hopeful you will get great care for him at Mayo. Dr Edward Loftus is very very good and helped me tremendously. I have osteopenia from two years on Budesonide and I am only 46. There are other side effects too which leave me feeling not like myself. Let me know if there is anything I can do to ease your navigation at Mayo and I wish you two the very best.
01-15-2014, 09:15 PM   #10
Essieluv
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I just set up an appointment for Mayo in February. I have Crohn's, but it's a very complicated case and have not been in remission since being diagnosed almost three years ago.
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Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
01-15-2014, 10:14 PM   #11
Michelley
 
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Hi Essieluv. I'm sorry to hear the meds failed. That must have been so hard to accept. I have not been in remission for over 2 years. In November I entered my 3rd year with this very bad flare. I am hopeful Humira will put me in remission but we will not know until the first of March if it is going to work.

I wish you the best of luck at Mayo. They have been very wonderful to work with. We stayed at The Kahler Grand Hotel which is connected to The Mayo main building. It made getting around much easier.
01-16-2014, 08:10 PM   #12
kimmidwife
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Hi Essie,
Just wanted to wish you luck at Mayo. Have heard such good things about them. Hopefully they will be able to help!
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