Forum Newbie from Thailand (Crohn's)

[Karun]

Hey Guys,

I'm Karun from Thailand. I was diagnosed in 1997 and was initially prescribed some neanderthal medicines, Salofalk and Prednisone - on and off - with 6mp till 2003. Then I started infliximab till 2006. I had a Total Collectomy done in 2007, and am now back on the cortisones.

I tried Remicade again in April 2013 but suffered an antibody reaction which resulted in a paralytic and respiratory attack.

So i'm now back on the neanderthal prednisones and am looking to pursue Humira.

Because of the rarity of this condition in Thailand, I've been treated in over 4 countries including France, Germany and Singapore. Humira is not FDA approved here, which means I have to import it myself and pay the full price, which I can't afford - that sucks! I've also had to deal with this condition since age 11, with no support or forums, other than those online so I've adapted to get the best resources out of these areas. If anyone in SE Asia is having a hard time you can send me a message.

Other than the reactions, I'm pretty fit. I gym a lot, which I believe is definitely helping me manage my Crohn's. I know it is different for each individual but from experience shared with other Crohnies, weight lifting is the preferred exercise to maintain or encourage remission (over aerobic exercises, or even yoga, just my opinion). I'd be happy to help anyone out so do send me a message Ive build solid muscle mass, only to discover that my docs want to put a permanent hole through my abs if I don't get Humira in time. It could still be a cool blog title, abshole?

My question to those reading this (or if you can shove me in the right direction)
1) Humira? how do I go on obtaining this at retail?
2) What are the prices in US or Canada. I've seen the ones online, but would like a more credible source.
3) Are there any scams out there, in terms of deliveries or offers for cheaper pens?

Cheers,
Karun

 

[SarahBear]

Welcome to the forum, Karun! It sounds like you have a lot of valuable information to share with other members.

As for your questions about Humira, you might want to read through and consider posting in the Humira section, which you can find here.

 

[Karun]

Thanks for the welcome Sarah! One more quick question as I'm still trying to navigate this site...

Methrotraxate vs Humira? Any suggestions or link to threads?

Thanks much

 

[Jessi]

Hey Karun. Welcome to the forum.

It could still be a cool blog title, abshole?

And thanks for the laugh!

If that is a current picture of you, you look fabulous! I have a lot of good friends who are body builders and I would love to be as fit!

As far as your question on Humira goes, I have only done Remicade, so I cannot answer personally. However, feel free to try out this subforum for Humira folks. And here is another one for methotrexate folks.

I hope you feel right at home here and get the answers you're looking for. :hug:

 

[Karun]

Hehe You're welcome

That is a current picture of me And yes you can do it Jessi, absolutely 100% no doubts about it. With Crohn's or UC you just have to keep at it. You can be sick, you can get a bit deflated, but you can never stop. I've rebuilt over 25 times over the past 5 years. I'd be happy to give out pointers anytime - I recommend starting with light weights, but challenge yourself with every session. Plus the nutrition required to maintain a Gym physique is great and may help with your symptoms. I survive on bananas (I'm lucky to live in a tropical country with great variety of fruit), a lot of water, and grilled proteins.

It may be a bit tedious at first, but stick to it. Once the aesthetics kicks in you'll be even more motivated

Especially for those that have taken, are on, or plan to be on Prednisone, its a good idea to get into weights to strengthen the bones That's one of the reasons I started lifting.

 

[theOcean]

I'm in Canada and get Humira. I inject with the pens every week, and it would normally be a bit over $3000 CAD every month for it. I'm with Trillium though, which charges you 2% of your monthly household income in exchange for coverage, so with that it would be much cheaper.

I haven't run into any scams with Humira, and get it delivered from my pharmacy every month.

 

[Jessi]

Awesome!! Thanks for the tips. Bananas are one of my staple foods. My personal nurse that comes to my home to administer my Remicade infusions is a body builder. He was excited to hear that I want to get back into shape, and said he'd help me along the way. I am always open to more tips. :hug:

 

[muffinzman]

Hi Karun im an australian who has Crohn's or colitis they are still not sure and i would like to retire to thailand in the next couple of years and im wondering what medication would be available. I take Mesalazine ( pentasa ) tablets and suppositories, Azathioprine ( imuran) and Esomeprazole ( nexium) Do you know if i can get these and how much it might cost on a monthly basis? Even a rough idea would be helpful Karun, Also is our illness managable living in thailand as i have only visited for a month at a time for a holiday.
Thanks Karun

 

[dave13]

welcome Karun

Your passion and knowledge may encourage other chronies with their quest for fitness. There is a fitness and exercise support group on the forum.I aggrevated a hernia this past Spring and couldn't work out for quite a while.Now I'm timid about going back because I am worried I will do it again,even if I am careful.

I was really seeing results,but now I'm unsure about going back.I just started with free weights when it happened.Previously I was using Nautilus equipment.

I have had a fistulotomy and three setons since I was last at the gym.I'm getting use to the setons and feel I could work out with them if I am mindful.It's aggrevating the hernia that makes me apprehensive.

Welcome

 

[muffinzman]

I just want to know if the medication i noted in my message is available in thailand and how much it might cost?
Thank you

 

[Karun]

Hi Guys,
Sorry I have not followed up on the posts. 2015 was an extremely busy and eventful year for me. I won a local Nationwide Fitness competition. I got on the Humira.

I intend to be more active with crohnsforum, as part of my plans to help other members in every which way posssible.

 

[Karun]

I'm in Canada and get Humira. I inject with the pens every week, and it would normally be a bit over $3000 CAD every month for it. I'm with Trillium though, which charges you 2% of your monthly household income in exchange for coverage, so with that it would be much cheaper.

I haven't run into any scams with Humira, and get it delivered from my pharmacy every month.

I am on the Humira now. So long so good. I hope you're doing well!

 

[Karun]

Awesome!! Thanks for the tips. Bananas are one of my staple foods. My personal nurse that comes to my home to administer my Remicade infusions is a body builder. He was excited to hear that I want to get back into shape, and said he'd help me along the way. I am always open to more tips. :hug:

How are you doing with your fitness now Jessi? Bananas and Oatmeal (no sugar, no milk - just water and boil) are my key food to reset me when I'm flaring!

 

[Karun]

Hi Karun im an australian who has Crohn's or colitis they are still not sure and i would like to retire to thailand in the next couple of years and im wondering what medication would be available. I take Mesalazine ( pentasa ) tablets and suppositories, Azathioprine ( imuran) and Esomeprazole ( nexium) Do you know if i can get these and how much it might cost on a monthly basis? Even a rough idea would be helpful Karun, Also is our illness managable living in thailand as i have only visited for a month at a time for a holiday.
Thanks Karun

Hey sorry I missed this post. I'm not sure if this will still be valid but
- I'm born and raised in Thailand (with a lot of overseas experience, I travel for work every 3 months. My sister studied at UQ, Brisbane, and she's going to Monash soon, so I do visit Australia annually as well).
Living in Thailand is great! You have nothing to worry about. Where are you planning on staying? I would recommend to retire beachside, outside of Bangkok.
- Pentasa, you can only get from one company here - I have the address and details so I can help you with that.
- Imuran easily available. Nexium should not be a problem.

If I don't respond in time please email me [email protected]

It will be my pleasure to help.

 

[Karun]

welcome Karun

Your passion and knowledge may encourage other chronies with their quest for fitness. There is a fitness and exercise support group on the forum.I aggrevated a hernia this past Spring and couldn't work out for quite a while.Now I'm timid about going back because I am worried I will do it again,even if I am careful.

I was really seeing results,but now I'm unsure about going back.I just started with free weights when it happened.Previously I was using Nautilus equipment.

I have had a fistulotomy and three setons since I was last at the gym.I'm getting use to the setons and feel I could work out with them if I am mindful.It's aggrevating the hernia that makes me apprehensive.

Welcome

Hi there! Thank you for the welcome! I was not active on the forum but I intend to be more active now. How can I be part of the fitness group?

I hope you are feeling better now and getting back to some fitness? Nautilius is a good brand.

If there is anything I can help with do let me know, it will be my pleasure!

 

[ronroush7]

I don't know how to send a link but there is a group in here called Diet, Nutrition and Fitness.

 

[Karun]

Thank you, I will definitely check that out!

 

[Grumbletum]

Hi Karun
I'm just over the border from you in Myanmar - a Scot working here as a teacher. Spent 3 weeks in hospital in Bangkok in February cos of a Crohn's flare up with a major complication. Still going back every couple of months at the moment for check ups. Luckily I have health insurance with my job.

 

[Karun]

Hi !

Great to hear from you... Are you feeling better now? Which hospital do you go to?
I've pretty much covered them all so if you need recommendations or any help in/around Bangkok do let me know

How's life in Myanmar?

 

[corvaccia]

Hello Karun

I am a French-Italian lady living in Bangkok, suffering from ulcerative colitis (bad form..) for the last 15 years.

I'm creating a patients' support group with BNH hospital in Bangkok. The scope of this group is to link together patients with IBD to discuss therapies, sport, nutrition, alternative medicine, very much also for moral and practical support to the patient and their family, to share good tips and to provide assistance during pick phases of the condition, if necessary.

You can contact me privately if you so wish: [email protected]

After having been hospitalized on numeral occasions, having had a very difficult second pregnancy (malnutrition, very skinny, baby born premature and under weight), having taken cortisone for years and ending up with osteopenia (a step before osteoporosis), after having been treated with Humira and having badly reacted to that (Leukopenia, diminished level of white blood cells) and Thrombocytopenia (low blood platelet count), after having taken ACTH (Synacthen) for Corisol stimulation (to try and get off cortisone, as I had become cortisone resistant) and having lost 2/3 of my hair (reversible effect, luckily!) I finally managed to find a durable solution in natural medicine.

I would like to share this with other patients. It's a treatment to take for 3 to 6 months based on turmeric. The positive results were there from day one.

I would recommend to anyone. It's a very powerful natural anti-inflammatory remedy, which is the base of most traditional medicines anyway.

There is a specific way to take it that I would be more than happy to share with you all.

It worked very well on me, that I still cannot believe I am completely out of my nightmare situation. It has been two years now, I have never felt so well in my post-diagnosis life ! I therefore have a deep motivation to talk about it. I am convinced it would help others as well.

Paola

 

[Karun]

Hi Paola,

Thank you for sharing your post. I have just written an email to you

 

[Grumbletum]

Hi Karun
Thanks for the offer - that's really kind of you. I go to Samitivej. My gastro is Dr Pitulak and for hematology Dr Parveena, both lovely and I have every confidence in them.
Yes, Myanmar is fascinating and the people are lovely. But it's good to escape to Bangkok every now and again - away from the traffic, dust and heat and to eat lovely Thai food. My stomach doesn't like Myanmar cuisine - too oily.
How are you doing?

 

[Karun]

Hey Helen,

Thanks for the post! I am doing ok, trying to keep fit! Some days I win, some days the CD does haha

I do not know of the doctors you have mentioned but private health care here is great

Yes, Bangkok is a great city but traffic can be limiting here too. I will be moving to Chiang Mai soon, and will miss the city for its vibrant energy. It is getting way to hot nowadays, but we have Songkran - the Thai New Years - to look forward to

 

[Catherine]

Paging Chris_k to this thread as you both in Thailand.