Is this the only way?

[Fayce]

Hello,

I have been advised by my doctor to start taking remicade, which I am wary of because of the research I've done into its side effects. This is my first time considering western medical treatment in 8 years. I was told by 3 different doctors that remicade was my only option 8 years ago, and since I didn't want to take it, I stopped seeing western doctors, and turned to various alternative medicines.

First, homeopathy, which was expensive, worked some but not extremely well, with complicated doses and no end in sight to the expensive treatment. After about 6 months I gave up.

My aunt used to run a medical dispensary, and she suggested marijuana as a treatment, which I have used successfully to treat my symptoms. I do feel it is more of a bandaid effect, masking the pain rather than healing the cause... With that being said after my results from a ct scan it appears my condition is not any worse than my last checkup years ago. I do have ups and downs with my condition though.

Last spring, I experienced one of the worst flares I had had since I was hospitalized 9 years ago. I experienced mucus coming from my rectum for the first time, and what I believed to be a perianal abscess, though it took so long to get an appointment (just saw the gi doc for the first time this January) that these symptoms have subsided. I'm currently experiencing daily stomach pain, especially when eating, and fairly regular diarrhea, gas, gurgles, and bloating.

When my condition was really bad in the spring, I turned again to alternative medicines. I saw an herbalist and a nutritionist. The nutritionist put me on a strict diet of warm squishy foods which I followed diligently at first. The herbalist prescribed boswellia which I used for a while then tapered off. I also started taking pheonix tears at night. After two weeks of taking the pheonix tears, my symptoms went away completely. Then I went travelling during the summer and eventually started eating whatever I wanted again, and my symptoms slowly worsened. For the past couple months, I've been under more than normal stress and I'm in a state of regular discomfort.

After talking to my doctor, I'm wondering is remicade really the best way to treat my condition? I want to hear your success stories or whatever experience you have had with remicade. Did your symptoms come back after you stopped taking it?

Are you able to eat whatever you want by taking remicade, or does diet always need to be restricted?

do the side effects of remicade even make it worth it? I did not respond well to imuran, and found I was sick all the time with colds and infections. My doctor wants me to take imuran again to prevent my immune system from attacking the remicade, but none of that appeals to me.

I want to be able to live life normally without feeling lethargic and crampy, but I also want to eat foods without restriction (I'm still a very healthy eater but I love cheese and chocolate... right now everything hurts when I eat though.)

If you've had any experiences with any of the treatments I've mentioned, I would love to hear your comments. Thanks!

 

[Clash]

Newer studies have shown that the scarier risks you are talking about are more on imuran than the biologics. Many many people have been on one or both with absolutely no side effects.

You aren't treating to rid yourself of symptoms. In order to prevent permanent damage, possible obstructions and future surgeries studies have shown that it is best to treat to deep stable remission which includes clinical (no symptoms/clear labs), endoscopic(visually clean) histological (clean biopsies) with mucosal healing.

The best meds to achieve this level of remission are the biologics. Biologics are not meds you can stop and start when you feel better or when remission is achieved because there is high chance of your body developing antibodies to the meds which can cause a reaction and will make the med no longer effective for you. This means you would lose a med that is effective from your treatment arsenal.

If your uncomfortable with biologics there are the immune modulators that include imuran, 6mp and methotrexate. The thioprines, imuran and 6mp, have shown to carry those risks you speak of. But be certain in the fact that these side effects are extremely rare. For the HSCTL it's like 2 in 10,000 in the gen. pop. and the risk increases to 4 in 10,000 in biologic group.

For a comparison look up the risks associated with tylenol, scary stuff but part of most everyone's med cabinet.

You take bigger risks daily just for quality of life such as driving during rush hour. Not in your age group but kids under 12 have a risk much higher than that of drowning yet kids swim all the time. Just look up some statistics for everyday activities and you'll see there are higher risks in things you don't think twice about.

If the risks are too much for you to consider maybe an open discussion with your GI could come up with alternative options.

To bring flares under control some choose exclusive elemental nutrition or EEN (formula feeds only) for six to 8 weeks sometimes longer then transitioning to a special diet like SCD, IBD-AID, PaLeo etc. My son did supplemental EN. He chose to use an ng tube, he inserted the tube each night and took in formula while he slept then removed to tube each morning before showering.

As far as biologics and eating my son has been on both remicade and humira. He has a full diet of what he wants, veg, beef, fruit etc. But he is asymptomatic in his flares so food was only an issue before starting meds.

Many have found they can have a full diet on biologics, some find due to scar tissue their diet can be more limited. It is truly individual.

Good luck hope you find a treatment for you soon! Hugs!

 

[Fayce]

Thanks for your response, this is very helpful info!!

 

[my little penguin]

Ds is 12 and has been on biologics for 4 years.
He stared. On remicade at age 8
But had an allergic reaction( he is an allergic kiddo- has numerous life threatening food and drug ,bee ,pollen etc... Allergies )
He did switch to humira and has not had any issues since .
Before he developed Gastroparesis he ate whatever he wanted
He is active in competively swimming attends school ( no extra illnesses) and participates in music etc and has for the past 4 years.


It also healed his Gi tract completely .

 

[Clash]

I know the meds are scary. When my son was dxed we opted to go straight to remicade and the 180 turn around was amazing symptom wise, right after the first infusion. But it was still scary to think of these big guns.

Four years, a failed biologic, a small bowel resection and another biologic later I am way more fearful of the disease than I am of the meds.

He is asymptomatic, eats whatever, lives the college life, works full time always out late and having fun. He's on both methotrexate and humira yet the last scope showed progression of the disease. This was the same case on Remicade and methotrexate before his surgery, no symptoms. So CD can be silently insidious and my fear is that even the big guns won't control it for my son.

Sometimes it helps me to make a list of my questions and concerns and go over each one with my son's GI.

A good acronym to use at GI is BRAND

B- what are the known BENEFITS of this treatment
R- what are RISKS of this treatment
A- what are the ALTERNATIVE treatments
N- what if I do NOTHING
D- DECIDE on treatment

Good luck and I'm so sorry you find yourself in a situation where you are uncomfortable with the options. I think being comfortable with your choice is so important. I hope you find a way forward no matter your choice that leads to complete health.