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Crohn's Disease Forum » Your Story » First Trip To Mayo Clinic


09-27-2012, 05:19 PM   #1
Chelsey79
 
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First Trip To Mayo Clinic

After going through 4 doctors since my diagnosis last February at the Bourland Groover Clinic Jacksonville FLorida i gave up and decided to try another option. Today was my first trip to Mayo Clinic Jax Fl. I am currently on Humira 40 mg every 15 days. The Humira worked great for about a month and then the reactions started. The reaction i got at my injection site started two months ago and my previous doctor was hardly concerned. It is a red, itchy, hot , raised bump, that is larger than a softball, and lasts about 3-4 days. My husband and i dread the injections anyway and now im not only having the rash but also extreme headaches as well as symptoms of my Crohns. Not as bad as before i was on Humira but still not ideal.
I was referred to this group of doctors by another Crohns patient and i agree that they seem to be the best i have come across so far. Extremely thorough and willing to look at all aspects of treatment, especially side effects.
Today i was told that these new doctors would like to do another colonoscopy to see how my ileum has responded to the Humira drug. It is possible that it has responded some but has quit working, and it is also possible that it hasnt worked at all.
Upon the results of this scope i am doomed to have relatively soon i am faced with some options which is where i could use some opinions guys!!!!!!!!!!
1. First these doctors recommend "treatment" : in the form of 6mp and for the 6mp to be combined with another drug such as imuran.
My doctors were very thorough in explaining the side effects of skin cancer, lymphoma, and leukemia. and also gave me brochures telling me to research the medicine.

2. I could potentially need surgery at the site of my Crohns. Where the Illieum and the Small Intestine Meet . In hopes to get rid of the small place where there is both scar tissue and inflammation.


Today was a difficult day. Not only another colonoscopy but now some whole new medication route. please veterans let me know what you think.

3 . MY husbands idea is while off all medications to try an extremely strict diet w exercise / all natural approach.

Thanks everyone for your time
09-27-2012, 07:36 PM   #2
Switalski
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Chelsey,

I had my surgery at Mayo Jacksonville in April, 2012. That place is great, and the doctors are A+. Ron Landmann did the surgery and Mike Pico (I believe) was the GI that saw me afterwards. Just wonderful people. You're in good hands.
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Diagnosed with Crohn's September, 2010
Right hemicolectomy April 4, 2012
Gall bladder removed February 16, 2015
Current meds: Humira
Adverse reaction to Remicade, but it worked
09-27-2012, 07:56 PM   #3
annawato
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Dear chelsey, sorry to hear about your troubles. I tend to fall in the camp that advocates a medical route. i've never found diet to help with Crohn's but other people have so maybe it depends on what is causing your crohn's. I think its more important to get on top of the crohn's before it creates too musch damage that would then mean having to have a bowel resection. the problem is that the resection doesn't cure the crohn's just gives you a period of remission and the crohn's tends to recur at the site of the resection. There is only so much they can remove before you run into problems with absorbing nutrients etc so you realy want to avoid this happening as long as possible. All drugs do have side effects and just about every crohn's patient has reacted to one or ather of the drugs they put us on, but the reactions are ususalyy not serious and just require a change of drugs. People who dont have crown's or who dont have it severely often suggest the diet route but they are not the ones who have to live with the consequences. The choice is yours and of course depends on the severity of your crohn's. It sounds like you have some good doctors there so listen to them, do some research and listen to other people on this site who may have better ideas than me. In the mean time stay strong and positive , all the best
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
09-27-2012, 08:04 PM   #4
Clash
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I don't have alot of experience with treatments as my son went straight to Remicade but I didn't know they combined 6MP and Imuran? They are both from the same set of thioprines but I could be completely wrong on combining the two. I know it is sometimes necessary to treat with the combo of biologics(Remicade, Cimzia or Humira) and thioprines/immunosuppresents(6MP, Imuran or Methotrexate). I would just research everything you can on each of the meds the GI has put forth as an option, then write down any questions you may have and approach your GI with concerns and let him know you want to feel comfortable in making your decision on treatment. I hope with whatever treatment you choose you are able to find relief of your symptoms soon!!!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 09-27-2012 at 08:21 PM.
09-27-2012, 08:40 PM   #5
Chelsey79
 
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The dr I spoke to today said combining them is one of the latest things they are working on. They have found the drugs to work extremely well together and even though the risks of cancer are greater there is a higher chance of remission. I'm confused about that too. Thanks to both of you for helping me think of questions to ask!
09-27-2012, 08:42 PM   #6
Chelsey79
 
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Chelsey,

I had my surgery at Mayo Jacksonville in April, 2012. That place is great, and the doctors are A+. Ron Landmann did the surgery and Mike Pico (I believe) was the GI that saw me afterwards. Just wonderful people. You're in good hands.
I'm seeing dr picco! What kind of surgery did you have?
09-27-2012, 08:46 PM   #7
Chelsey79
 
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Dear chelsey, sorry to hear about your troubles. I tend to fall in the camp that advocates a medical route. i've never found diet to help with Crohn's but other people have so maybe it depends on what is causing your crohn's. I think its more important to get on top of the crohn's before it creates too musch damage that would then mean having to have a bowel resection. the problem is that the resection doesn't cure the crohn's just gives you a period of remission and the crohn's tends to recur at the site of the resection. There is only so much they can remove before you run into problems with absorbing nutrients etc so you realy want to avoid this happening as long as possible. All drugs do have side effects and just about every crohn's patient has reacted to one or ather of the drugs they put us on, but the reactions are ususalyy not serious and just require a change of drugs. People who dont have crown's or who dont have it severely often suggest the diet route but they are not the ones who have to live with the consequences. The choice is yours and of course depends on the severity of your crohn's. It sounds like you have some good doctors there so listen to them, do some research and listen to other people on this site who may have better ideas than me. In the mean time stay strong and positive , all the best
Hey! I understand and partly agree with you. My crohns isn't so much upset by diet it's more so stress. I notice symptoms when I am under alot of stress or have anxiety. I think we are going to attempt the medicine and try to avoid surgery.
09-27-2012, 08:47 PM   #8
Clash
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Like I said I don't really have a lot of experience in the treatments. Are they wanting to try this in hopes of getting you into remission for the surgery to remove the scar tissue? Have they given you a time frame as to how long they would want you on the combo? Possibly, if they were able to get you into remission and then remove the damaged area maybe then you could switch to one or the other as a maintenance med? I know there is a lot better chance of long term remission if you are already there when the resection to remove scar tissue is done. I can understand your worries and hopefully someone will be along shortly with more experience and knowledge with treatments.
09-27-2012, 10:22 PM   #9
annawato
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Hey! I understand and partly agree with you. My crohns isn't so much upset by diet it's more so stress. I notice symptoms when I am under alot of stress or have anxiety. I think we are going to attempt the medicine and try to avoid surgery.
Yes stress is definitely a trigger for me. In fact its the only thing I can really pinpoint to causing flares. Must be something to do do with the hormones we release when we are under stress. Cortisol and norephrinine (sp?) are the main ones but i've read that they affect the enocrine and metabolic systems and can cause ulcers (and so crohn's), hypertension, adhd, increase in infectious diseases etc. Actually I woudn't mind a little dose of adhd, haha. Any extra energy would be appreciated!
09-28-2012, 12:56 AM   #10
David
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Hi Chelsey and welcome to the community.

First off, I agree with Clash, I think you're getting your signals a little crossed about Imuran and 6-MP. My guess is they're thinking of combining either Humira, Infliximab (Remicade), or Cimzia with 6-MP or Imuran (azathioprine). You'll find out soon enough though

I completely understand your husband's desire for you to get off all the drugs and try a natural approach. In my opinion, it's a GREAT idea to try alternative treatments and a change in lifestyle to a more healthy one, but do it in conjunction with the traditional treatments. Crohn's is an extremely serious and complicated disease and I feel it should be attacked from every angle. Hit it with the traditional medications, the exercise, the dietary changes, the stress reduction techniques, the alternative therapies, the supplements, and whatever else has some scientific backing that showcases it might be efficacious all the while working with your GI to monitor your condition very closely. Don't just pop a pill and be done with it, do everything you can to change the course of the disease.

And we're here to help you every step of the way
09-28-2012, 03:57 AM   #11
annawato
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Chelsey, i think David sums it up very well. Good advice to follow.
09-28-2012, 04:11 AM   #12
Avw
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Yep, David is absolutely right. I wish more doctors would recognize the importance of the "whole picture" and encourage their patients to supplement the traditional therapies with diet, exercise, and supplementation.

But, hey, that's Western medicine for ya!
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Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
09-28-2012, 04:58 AM   #13
Wooddy
 
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What did you guys have to do get into the MAYO clinic? Did you have a doctor refer you or did you fill out the application on your own? What did you include with your application?

I just submitted my application to the MAYO clinic in Minnesota a few weeks ago and am waiting to hear back from them. I hope they take my case.
09-28-2012, 06:32 AM   #14
Chelsey79
 
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Hi Chelsey and welcome to the community.

First off, I agree with Clash, I think you're getting your signals a little crossed about Imuran and 6-MP. My guess is they're thinking of combining either Humira, Infliximab (Remicade), or Cimzia with 6-MP or Imuran (azathioprine). You'll find out soon enough though

I completely understand your husband's desire for you to get off all the drugs and try a natural approach. In my opinion, it's a GREAT idea to try alternative treatments and a change in lifestyle to a more healthy one, but do it in conjunction with the traditional treatments. Crohn's is an extremely serious and complicated disease and I feel it should be attacked from every angle. Hit it with the traditional medications, the exercise, the dietary changes, the stress reduction techniques, the alternative therapies, the supplements, and whatever else has some scientific backing that showcases it might be efficacious all the while working with your GI to monitor your condition very closely. Don't just pop a pill and be done with it, do everything you can to change the course of the disease.

And we're here to help you every step of the way
Yes I can't remember the name of the drug he said they are going to combine but it's with 6mp. I know it's not remicade or humira and I remember it started w an I . I could have sworn it was imuran I will reply to this post when I find out! Either way I am so excited no more humira injections! Thanks do much for your feedback! Still pretty new to it all!
09-28-2012, 06:35 AM   #15
Chelsey79
 
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What did you guys have to do get into the MAYO clinic? Did you have a doctor refer you or did you fill out the application on your own? What did you include with your application?

I just submitted my application to the MAYO clinic in Minnesota a few weeks ago and am waiting to hear back from them. I hope they take my case.
My doctor is in a group in one of their 3 buildings . All I did was call and ask to schedule an appointment. My last doctor was no help and gave no referral. I was pleasantly surprised how easy it was. I had to wait 3 weeks to get in but they were very on top of things! Good luck
09-28-2012, 07:00 AM   #16
Clash
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Chelsey may it have been inflixamab? That is the chemical name of Remicade.
09-28-2012, 08:05 AM   #17
Chelsey79
 
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Chelsey may it have been inflixamab? That is the chemical name of Remicade.
I don't think so he said that since the humira didn't work then we would try something else. I know it's not remicade . Because I asked if we could try that instead. He said the other combination works much better. We shall find out soon.
10-23-2012, 09:51 PM   #18
Chelsey79
 
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I found out today that the combination they chose after my colonoscopy is cimzia and imuran. I met with dr picco today and my test showed no signs of healing after humira . The mass I had in my colon last spring is still there and after two biopsies they ruled it is just from the inflammation. My crohns is in my illeocecal valve/ small intestine where they meet. I've now had 3 colonoscopys and never have they been able to get through. My doctor explained that they chose dual therapy because of the SONIC trial have any of you heard of it? It was a trial involving Aza and remicade? They said since I am young they want to hit the disease hard enough to get in front of it so I can avoid fistulas strictures and surgeries. I am anxious to see how cimzia differs from humira and if it works. Thanks everyone for your support and knowledge still learning alot! They are you going to closely monitor my liver and blood levels to make sure I'm not reacting incorrectly to the meds. I love my new drs!
10-23-2012, 09:54 PM   #19
David
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Hi Chelsey,

Yes, I reference the SONIC trial and other, like studies a lot in the articles I am reviewing in this thread. You may want to click through to the ones about biologics, azathioprine, and combination therapy if you'd like to learn more. Or if you have specific questions, hopefully we can help
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