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Advice and Experience Wanted!


Tue, April 14, 2020 6:56 PM

Hi there,

My name is Mary and I just got diagnosed with Crohn's disease last month. I'm scared out of my mind-- I've done research on the meds my GI doctor wants to put me on (primarily humira and/or remicade) but I'm nervous because I'm young (22) and the possible side effects for these biologics are awful. 

I'm not sure what to do. I would rather try other ways of healing, like diet, supplements, etc. and I'm considering seeing a naturopathic doctor. I'm not against medication, I'm just not sure I want to jump straigh into a biologic!!!

Thoughts? What has been your experience with biologics? Has anyone here ever tried going to a naturopathic doctor and changing their diet/supplements to help Crohn's disease? 

And seriously, I'll accept any advice because I have no idea what I'm doing!

Thanks so much! 

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Tue, August 11, 2020 11:44 AM

Reply posted for marypj98.

My daughter is 18 diagnosed at 10 years old. She started out on methotrexate but at some point it stopped helping.  We switched to Remicade a few years ago.  She has chronic headaches and nasal congestion.  This might be a side effect of the medicine.  Nothing else terrible has happened to her.  Good luck

FPO Cpr
Joined Aug 11, 2020

Fri, August 07, 2020 4:22 AM

Reply posted for marypj98.

i am also a 22 female and i just started humira
i am terrified of all these medications
i try to use eastern medicine or holistic as much as possible
right now weed/cbd is a life savior 
advice always wanted here!
let me know how it goes and you find some helpful tips and tricks
my biggest problem is joint pain it drives me insane

FPO gonzo777
Joined Jun 14, 2019

Sat, August 01, 2020 8:37 PM

Reply posted for marypj98.

My 2 cents is that it's not worth it. When I was diagnosed in 2012, I wanted to try *everything* else before even going on immunomodulators (6MP). I did diets, Asacol, some other weird stuff, and finally was forced into prednisone after 2 years because my disease was just completely uncontrolled. And it was a miserable 2 years. Eventually I got onto 6MP and it worked for 6 years and I could do everything I wanted. Drs didn't like the long terms effect of that drug and convinced me to switch to Humira (mistake for me), and it didn't work for me and I had the worse flare in years on that even though it cleared my skin nicely and I didn't have any side effects other than injection site reactions that cleared up in a day or 2. The moral of the story is that different medications will work/have various side effects or not for everyone. Not saying diet and naturopathic remedies won't work for you, but it's unlikely and you might find yourself wasting a lot of time. I always found the saying "what's worse: low chance of side effects on XYZ drug, or a chronically inflammed, diseased colon?" to be a helpful reality check. 

FPO summerraven
Joined Aug 1, 2020

Tue, June 30, 2020 10:31 PM

Reply posted for marypj98.

I have had Crohns since 2002. Was on Asocal for many years. Had flareups now and then ,did the prednisone routine. Mother ,sister,niece have Crohns also. Have read that Crohns disease is a progressive disease, that everyone will have surgery sooner or later. Don't know if thats true or not. My mother had two feet of large and small intestine removed. My sister has had to many surgeries to mention , is in a wheelchair now. Anyway 2016 big flare up lost 30 pounds, very ill ,missed 3 months of work. Long story short , I have been on Remicade almost four years now, no flareups. I seldom get a cold or get sick. My sister ( by the way I'm 64 sister 4 years younger) has been on Remicade for 8 years with no flare ups. Can't say I don't ever get loose stools, but thats usually because of what I ate.  If your worried about the cost the Jannsen Corporation has a program that helps with the cost of Remicade.

FPO rbridges
Joined Jun 30, 2020

Wed, May 20, 2020 2:36 PM

Reply posted for marypj98.

Hello, It is of course your choice if you don't want to jump into them, but just so you get some perspective from both sides.. Here is a small part of my story. I was diagnosed with Crohn's when I was 15 and had surgery the same year, probably because it took them years to diagnose me and to even get doctors to believe me. They put me straight onto Humira after surgery to make sure my inflammation didn't flare up again. Sadly, the Humira didn't work for me and I did flare up again. Then after adding prednisone and Imuran with no luck, my Dr. Decided to put me on remicade. Remicade wasn't the best for me, but my inflammation was spreading at a slower rate so I tried it for awhile... A little over a year I developed Serum Sickness out of nowhere and it sucked... That was a scary, extreme hospital visit. During that visit they discovered more inflammation than they thought, and I had my second surgery.not even 4 years after the first one.... Then they put me on Cimzia and decided not to wait too long to find out that it clearly wasn't working... Luckily by this time Entyvio was approved by the FDA and I could finally try the miracle drug my doctor kept mentioning... And it actually has been working. I still can't believe it.. So I can't stop taking it ever or I'd risk the chance that it wouldn't work again or wouldn't work as well, and I don't have many treatment options left after exhausting so many. I still have very severe sympyoms and am not in remission, but I'm not getting surgery every 4 years. I'm very lucky that I didn't wake up with a bag last time, but next time I need surgery I will. As much as serum sickness hurt and scared me.... I would have been okay with all the treatment options that I tried giving me serum sickness and all the side effects I had, if it meant I'd eventually find one that would take away even a quarter of my pain. While I know someone that has crohn's and has never been on a biologic who isn't suffering, she isn't in remission either.. And the thought of what my life would be like if I hadn't tried them scares the poop out of me, literally. The only thing I can guarantee is that things will get worse, and better, and worse...... And better. It's up to you if delaying treatment is worth the risk. For most people diet is not enough. Hope that was helpful and not too scary.

FPO Poopypants
Joined May 20, 2020

Wed, May 06, 2020 7:51 PM

Reply posted for CCLiu.

Replying to my own post because I feel like I came across overly anti-doctor and anti-biologics... 

OP - your feelings are justified and reasonable. Listen to your doctor and make the decision you feel comfortable with. Going on biologics or delaying them are both rational options. Just don't let them make you feel like you HAVE to go on biologics today. 

FPO CCLiu
Joined May 6, 2020

Wed, May 06, 2020 7:33 PM

Reply posted for marypj98.

Hi Mary - 

I'm 32 and have had Colitis for about 17 years. My symptoms are getting worse and more frequently occurring as I get older. However, I am similarly very resistant and hesitant to get on biologics. They are a major disruption to the chemistry and function of your body. 

Candidly - I have a major problem with how cavalierly Doctor's offer biologics to patients and how freely they pressure them into taking them. Something has changed in the last 5 years and Doctors just want to jump right to biologics. But it's a major step for the patient and should not be taken lightly. You are absolutely correct to feel resistance. 

As I mentioned, my symptoms are getting worse and I am starting to feel like I need to try biologics. However, I was able to go almost the entirety of my 20s only having a flare every 18 months or so.

It is very reasonable for you to say NO to biologics for now and try out milder treatment options (mesalamine, asacol, etc...). If they work for you - GREAT, you didn't have to go on biologics. If they don't work or your symptoms become unbearable - go on the biologics, no big deal. They will be there. And in a couple years, they will probably even work better than the ones that are out now. 

The Doctors are going to pressure you into the biologics. It is your responsibility to advocate for yourself and how you feel. I will also strongly suggest doing research into diet modifications and mental health. They are often ignored by Doctors but are very strongly linked to UC symptoms. 

Best, 

-CL

FPO CCLiu
Joined May 6, 2020

Wed, April 15, 2020 11:20 AM

Reply posted for marypj98.

Hello Mary,
My doctor tried different meds and none worked.  I lost about 50 pounds and almost died.  I did not want to go on remicade.  I finally went on it and have been having the infusions every 8 weeks for 17 years now and have been sympton free since with no side effects.  Life has been totaly normal since.  Within a week I was able to resume my workouts and start to gain weight.     
Godspeed
bj

FPO bjw
Joined Mar 20, 2020

Wed, April 15, 2020 8:53 AM

Reply posted for jarofclay47.

Hey Mattie! Thanks for sharing your experience, I really appreciate it. :) I'm glad to hear you've found a treatment that works for you! It gives me hope that I will too. 

FPO marypj98
Joined Apr 14, 2020

Tue, April 14, 2020 7:26 PM

Reply posted for marypj98.

Hey Mary,

I'm sorry to hear about your diagnosis. My name is Mattie and I'm also 22 with Crohn's-- I was diagnosed 6 years ago, and have been on both Humira and Remicade (currently on Stelara and it's finally working for me!! Woohoo!). I never experienced any negative side effects to either Humira or Remicade, but I also never talked to a doctor in alternative medicine so I don't have much advice for you there.

If you ever want to talk Crohn's, I'm here for you! It can feel isolating to have IBD, but you are not alone. You are stronger than you think you are and you got this :) Best of luck to you as you navigate this change!

Mattie

FPO jarofclay47
Joined Aug 22, 2019

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