• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohn's is back stronger than ever before

hello
i was diagnosed with crohn's disease around 4 years ago back when i was in my home country Syria, before i come here to live and work in UAE.
back then ,my symptoms disappeared after couple of months of treatment and till 2 weeks ago i forgot that i even have this thing.
2 weeks ago i started to have pain in the right side of my stomach just suddenly , i waited on it for few hours then i went hospital and had ultra sound and ct scan and they scheduled me for colonoscopy which showed severe ulcers.they were shocked that i just had pain for one day while what they saw should v made me sleepless for months !
Doctor prescriped Imuran and Pentasa for me which i used to take before, he didn't give me prednisolone because am still recovering from fractured tibial plateau which required surgery 9 weeks ago.
he said he ll call insurance company about giving me a medicine am not familiar with called Remicade, but the cost of this is unbelievable even if the insurance will cover alot of it ,
i called my Docotor in Syria and he told me that Remicade is only used when all other drugs don't work and i should wait at less 2 months before i go for it.he also told me it has very dangerous side affects .when i told him about the cost ,he said yes its very expensive but its for free in Syria
am confused and i don't know what to do. i already took more than 2 month sick leave for me fracture and right now am using crutches to go to work and my company is not happy about that. it may take me many months to walk again, having crohn's back made it too much to handle
i dont know if i should go back to my country where i have family to take care of me and affordable good medical system but with big chance that ill lose my job.or should i stay here facing all my problems alone through health care system seems only interested in my and insurance company money.
thanks for listening for any one who may read this.
 
I'd want to be with family, if I were sick. But, how great is your job relative to what you could find in Syria? It might be worth handling everything alone, if I were being very generously compensated. Just deduct all medical expenses from your salary, to see.

Very sorry you are sick!
 
Amy2
my job is not so great.if it was normal in my country id go back there for sure ,but the problem is because of the civil war going on in Syria for the past 2 years, it would be very difficult to find any job there,and from here i can support my family a little bit because business s became so slow there and everything s crazy expensive because of the war. and it would be almost impossible to come back here or to any other country because in UAE like most of the countries they stopped issuing residence visa to Syrians.but if you already here they would renew it.
the worst part of my problem is facing it alone. i wish i could be with my family right now but am thinking about the consequences .
thank you.
 
MD24:

Your health must take precedence right now.
Can you take a longer leave of absence and let them know you will be back when you are healthy again? That may be a lot to ask of them, but some people are very compassionate.

It sounds like you are in a very bad flare which could take a while to get under control. You may need to rest while you are healing. Remicade is a wonder drug for some and worked for my daughter after several months (7 treatments) some get response quicker. She has had no side effects at all, she is now symptom free.

she did try everything else. Are you on Prednisone to get a handle on the disease very quickly?

It is true that they often insist on trying all other types of drugs before Remicade:
Usually prednisone along with Asacol, then a 6mp is added and an antibiotic. It can take several months to see if your body responds to any of these meds before Remicade is used.

Are you getting all the vitamins/iron that you need as well?

Try removing lactose for a while too.
 
Hope345
the people am working for are ot that good. they would not agree for sure.
Last flare up (and my only one before this) i took Prednisone and it was magical,worked very very fast. unfortunately this time they said i cant take it right now bcus am still recovering from very bad fracture . am gonna check with my surgean about that.
the thing is my flare started only 10 days ago and they already talking about Remicade!
my flare is bad on papper..they saw sever ulcers and they said its very bad. but symptoms are not that bad..just little pain and couple of more trips to bathroom than usual. what makes it so difficult is am not so mobile and still using crutches to move around
thank u,wish u and your daughter the best
 

Catherine

Moderator
I am calling my sister Maree. to your thread as she is currently living the UAE with her family and should have some idea of the medical system.
 
Hi MD24 totally sympathise about finding good doctors in the UAE. I find we need to be very careful about where we go for treatment, some hospitals have a real over treating model.

We are in Dubai, so can't provide specific suggestions about Al Ain.
Is the doctor who is treating you at the moment a Gastroentrologist? What is your Syrian doctors suggestion of what you should try before remicade, perhaps you should ask your doctor here if he would be willing to try that first or find another doctor who will prescribe that (subject to checking that it's an affordable option with your level of health cover.)

Given the state of the Syrian conflict, which doesn't look like it has an end in sight, I think it might be worth trying to see if you can find affordable care options in UAE before giving up your job here.
 
More questions I thought of since I posted last:

With the doctor your currently seeing in the UAE, are the appointment costs charged to your insurance company & you pay an upfront deductible, or do you have to pay the full cost and then try to claim it back from your insurance company?

Same questions for testing & prescriptions written by this doctor.

If not are there other hospitals or clinics in Al Ain that has agreements with your insurance company?

We've dealt with both models in Dubai and I now try to avoid like the plague doctors who expect the patient to pay upfront and deal with the insurance claim as with our insurance company it takes a ridiculous amount of time to get reimbursed & I find when the doctor's office is dealing with the insurance approvals they put a lot more effort into getting the details and justifications right, so it's far more likely to be approved.
 
Maree.
Yes he s a Gastroentrologist.
My Syrian doctor suggested i try Prednisone in addition to Imuran and Pentasa for at least 2 month before i even consider Remicade.
i really hate health system here.when i had my colonoscopy in Syria it was done in doctor's office with the help of his only assistant. it took 20 minute and i was fully aware and awake and i just walked home after its done. when the result came to confirm CD he told me take these meds and u ll be fine , i asked him what if they dont work he said they wil. i asked him when i should see you again ? he said hopefully never. i paid cash for everything but it was just little money. all was simple and comfy.
while here i had to wait one week for insurance to approve my colonoscopy. it was done in hospital where i had to spend 6 hours and they gave me too much Anastasia that i had to sleep for 20 straight hours after i left hospital . and they already talking about Remicade and surgery in case this doesnt work!. i just cant skip comparing between here and there and how inconvenient it is here. and it cant be because my flare is bad this time because in Syria i was in way much worse condition.
Untill now am not paying lot of money . they just ask insurance for approval before every procedure and wait till they get it. i copay 30% of Meds.
ill just check with my orthopedic surgeon about taking Prednisone . i think its my best option for now even if it slows down the healing of my fracture
Thank you so much.
 
Last edited:
How bad the damage is inside versus how bad the symptoms are doesn't always match with Crohn's sometimes it can be doing a lot of damage while silent. Normally Crohn's patients take a maintenance medication between episodes to prevent the disease flaring again. There are some patients that try to maintain remission via diets, however the nature of Crohn's is that for most patients it will return if left untreated between flares.

It's good that their doing the insurance approvals first, it's definitely worth a weeks wait to get that first. My son has had both experiences with scopes the one that took 20 min (at Dubai London) and he was fine to leave within 2 hours and one that took an hour and where we had 12 hours at hospital (Dubai American hospital).

Did the specialist in UAE give you photos of your scopes and results of any biopsies they took, if not I'd get a copy of those for your personal records, also gives you something to show if you choose to get a 2nd opinion.

Definitely talk to your orthopedic surgeon and get his opinion on Prednisone also you could ask around for the name of another Gastroentrologist and get a 2nd opinion on how bad the damage is and what treatment they'd recommend. I tend to get 2nd opinions a lot here.
 

afidz

Super Moderator
I am not sure how the health care system works in Syria, or really anywhere else in the world for that matter.
Honestly, if your doctor on Syria prescribed you pentesa and then sent you on your way saying that he hopes to never see you again, I would be concerned. Crohn's is a very serious disease that needs to be monitored, even in remission. You can have absolutey no symptoms (like in your case) and then all of a sudden out of no where you have problems. Also, Pentesa or other mesalamine products are intended primarily for Ulcerative Colitis. Although the two diseases are very similar, how they respond to the drugs is different. Pentesa only goes to the first layer of your intestines, which is why its good for UC because UC only effects the first layer. With Crohn's, it effects all of the layers of your intestines, and if you are taking Pentesa, only the first layer is being treated.
Having Crohn's, your body naturally will have a tough time healing. Taking prednisone, although it will help bring down the inflammation in intestines, may make healing from your surgery more difficult. Definitely bring it up to your ortho surgeon, if he is ok with it, then go for it. Just keep in mind healing may become harder and it may take more time.
I am very sorry to hear about whats going on in Syria and having difficulty deciding whats best. I hope you figure out a solution soon
 
Maree.
i was really missing that point, that damage and symptoms don't always match. its mainly because doctors kept asking me " are you sure you've been having pain for only one day" and they said based on what they saw i should v been in pain for months.
to be honest i was suppose to take 50 mg Imuran to maintain remission but i made stupid decision to stop it around 6 months ago thinking am just fine. also i stopped my mild diet and started eating lots of bad food for me like nuts and hard vegs. maybe this what triggered it.ill never do that again.
i guess getting a second opinion ll be a good idea. thank u.
 
If your talking to your doctors about steroids, perhaps ask about Entocort as well as Prednisone. I noticed in another thread a discussion about it perhaps being safer as it's more targetted. From what I've read downside of the more targetted is only suitable certain disease locations, so may not be suitable for you, but still might be worth asking about.
 
afidz
am not sure you can call it a system in Syria lol, but i really trusted it because it worked for me. back in Syria i was not only on Mesacol, i took also Prednisone ,Imuran,Flygel and some other Antibiotic. the problem with my fracture is that it already takes along time, its almost 3 months after surgery and still no full weigh bearing and it ll take up to one year to be back to normal and that is really frustrating ,thank you and best of luck to u too
 
If your talking to your doctors about steroids, perhaps ask about Entocort as well as Prednisone. I noticed in another thread a discussion about it perhaps being safer as it's more targetted. From what I've read downside of the more targetted is only suitable certain disease locations, so may not be suitable for you, but still might be worth asking about.
ok i will ask about it.i guess i should try anything before that infliximab. because after a small calculation i found out that even if insurance covered their share,my monthly income would not be enough to pay mine lol. Doctor mentioned something about sending the red crescent a letter and they may pay but am not sure how that goes.
 
It's good he is trying to arrange charitable help with the cost of the infliximab. But agree that you do need to discuss with him and your orthopedic surgeon what the options are if that doesn't eventuate & infliximab isn't an option you can afford.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Remicade isn't a last resort medication. Its often used now to get inflammation under control quickly and hopefully help you avoid needing surgery. That's the top down approach. Prednisone is meant to be used short term but the longer you use it the more complications it can cause. If you could get the Remicade paid for then that would be ideal. It'd be hard to send your family money if all of the money you're making is going towards your medical costs. Yet you can't provide for your family if you're not able to work. That's an extremely hard decision to make and quite honestly I'm not sure which I would choose. What you need is all the information you can so you can make an informed decision, one that makes sense and that you wont regret later. Find out if the Remicade will be paid for 100% and inquire about the Prednisone as you mentioned to see if its a good idea but keep in mind that you shouldn't be on it long term (I'm hoping that 2 months your doctor mentioned included the taper off of it). Good luck and keep us posted. :)
 
Jennifer
Yes this is what am trying to do , gathering information and hopefully making the right choice. and u guys v been very helpful with that. Last time I took Prednisone it worked great for me. I took it for almost 4 months and I really enjoyed the weight gain :D . hopefully something ll work and ill avoid surgery for now. thank you.
 
Location
Lebanon
Hi there. Sorry to hear about your experience with Crohn's in the UAE. We live in Abu Dhabi, my daughter has Crohn's for the last 2 years, but is in remission and doing fine. Abu Dhabi is not too far from Al Ain, if you can come down here, visit Dr Huda Kattaa at the American European medical centre 024455477. She is the most fantastic Crohn's specialist. In case you need a surgeon use Dr Hikmat Mattar, he is outstanding and knows Crohn's from personal experience .
When my daughter had a flare up we were told by a different doctor that she should start Remicade, but after visiting dr Huda, she is now doing fine on Pentasa and Imuran. You have to be careful though with The meds here, sometimes they run out so always have 2 month spare supply with you.

Hope you can get it under control soon.
 
Just thought I'd check in to see how your doing.
hey. am doing fine thank you.I v been on prednisolone for the last month and i feel much better, gained 5 kg already ,normal bathroom visists. so hopefully its going under control. thanks alot for asking.
 
Hi there. Sorry to hear about your experience with Crohn's in the UAE. We live in Abu Dhabi, my daughter has Crohn's for the last 2 years, but is in remission and doing fine. Abu Dhabi is not too far from Al Ain, if you can come down here, visit Dr Huda Kattaa at the American European medical centre 024455477. She is the most fantastic Crohn's specialist. In case you need a surgeon use Dr Hikmat Mattar, he is outstanding and knows Crohn's from personal experience .
When my daughter had a flare up we were told by a different doctor that she should start Remicade, but after visiting dr Huda, she is now doing fine on Pentasa and Imuran. You have to be careful though with The meds here, sometimes they run out so always have 2 month spare supply with you.

Hope you can get it under control soon.
hi .thanks for all the usefull info. ill keep these doctors in mind in case of future problems .but for now am doing ok since they finlaly put me on prednisolone next to pentasa and imuran. i didnt know meds run out here. ill keep extra supply as u said. thanks u s much.
 
Top