Diagnosed 6 month ago

[khashayar]

Hi my name is Khashayar. I'm from Iran. I was diagnosed 6 month ago with crohn's disease. I've been feeling better lately, but I'm really worried that if something happens and it gets worse. I am taking 2400 MG Asacol, 50 MG Prednisolone (but reducing 5 mg every week), 30 MG Dompridon, 75 MG Imipramin and more. (11 kind of pills)
I have had diarrhea for about 6 or 7 month. The doctors couldn't find out what was wrong with me. The first doctor told me that i had to do an endoscopy. so i did it and after that he informed me that i have Gastroesophageal reflux. He gave me some pills including nexium, lopramid, but didn't help the pain and diarrhea. so after that i changed my Dr to a better one. he did a colonoscopy and told me that i have crohn's disease. he hospitalized me for about one week. then i went home, but after two days i went back to hospital because of the pain. They shot me with corticosteroids but now I'm feeling really better. but the part that i have much higher chance of getting cancer or one day i should do surgery really scares me.
oh i almost forgot, my uncle have AS (Ankilosing Spondylitis) which is hereditary disease. my doctor suggested me to go to a rheumatologist to check myself. i haven't done it yet.
This was my story. Now I have some question about it.
1. What is the relation between crohn's disease and AS ?
2. How is my chance about net getting the AS disease ?
3. Isn't it better to leave these medicine and instead take Infliximab Remicade ?
4. How is the chance of not getting bad again ?

Sorry for my bad English
And Thank you so much for reading my story

 

[Clash]

Khashayar, sorry to hear about your diagnosis but welcome to the forum. I recognize alot of the meds you are taking but others I don't(maybe someone more experienced can come along and give you better insight on those) Prednisolone is often used at onset to get the inflammation down and Asacol is used as a maintenance med for crohns although I think there are studies that show it's efficacy isn't as great with CD as it is with UC as it heals the topical layer which is how UC affects the bowel and CD can be all the way through all layers of the bowel. Also, where exactly is your CD located as that can make a difference too.

AS can be seen in patients with CD, I think more predominently in males but I don't know the exact percentages of risk associated with it.

Remicade can be used to help both AS and CD and will hit the inflammation hard and fast in hopes of getting the CD into remission. It is the med my son uses and has used since dx. It is a personal decision of course and there are alot of treatments out there that can work to help with CD. We have a treatment forum here you may want to look through as well as a diet and supplement forum to browse.

Your last question about it not getting bad again is a little harder to answer. There are plenty of people with IBD that achieve remission for very long periods of time and others that fall between remission and flares often. I would suggest you research all aspects of this disease so that you can be the best health advocate for your self.

I hope you achieve remission soon!!

 

[David]

Hi Khashayar and welcome to the community. I think you might be our first member from Iran Are you still living there? And for the record, your english is excellent!

I don't have any good advice but wanted to welcome you

See you around the community!

 

[khashayar]

@ Clash : thank your so much for the information dear Clash. about the location of the CD, it is at the end of the colon, and has effected about 40% of it. I have 4 uncle and 2 of them have the AS disease. i guess i have high chance of getting AS.
About the remicade, i guess i read somewhere that taking remicade my cause problem for the immune system. Is it true ??
How does smoking, drinking alcohol and coffin affects CD ?
Thanks
-----------------
@ David : Thanks David. I'm stilling living in Iran, but in this time i guess here is the worse place to live. My Dr said i should not have any stress, but that's not possible here !
I wanted to build a website for Iranian patients, but i didn't have enough information about CD and UC. If you please tell me a website that have enough information about these diseases i will be glad to translate them to Persian and make them available for Persian users. Here in Iran there are lots of CD and UC patients, but there is no website that represent information.
Thanks

 

[Ckt]

Hi khashayer and welcome!i just joined the forum myself in the past month and have found it really great. I don't know that much about AS so I can't help you there. Remicade affects certain immune cells called tumor necrosis factor which seem to cause muc of the inflammation in ibd. It is not a benign drug and has its own risks being a very strong immune suppressant drug. It makes us more prone to get different infections. It can also increase the chance of acquiring lymphoma but this seems to be higher in the younger patients receiving it. That said, many people find it a godsend as it puts them into remission and keeps them there for a good period of time. There are other drugs like remicade such as humira and cimzia. From what I understand, they act in the same ways but the side effects can be lower because remicade is made partially from murine, derived from mice. The others are all from human cells.
I have been on all of them. My body made antibodies against the mouse derived part of remicade causing some nasty reactions such as swelling in my face, difficulty breathing so I was switched to humira when it was first approved for crohns disease( it was initially approved in the USA only for rheumatoid arthritis). That worked okay until it didn't! I did not have any side effects from it but it became so it didn't have any effect on my crohns so I was recently switched to cimzia. I have only had the first loading dose of cimzia but had terrible fatigue from taking it and generally felt awful the next few days after the dose. Nothing serious, just feeling very down and like I had the flu.
I was tried on all the other oral medicine for crohns before graduating to the big guys like remicade. The oral medicine had absolutely no effect on my crohns but everyone is different and some people do really well on them.
Do a lot of research on here and throughout the Internet on crohns disease. I am a nurse but did not know that much about it until I got it and learned more about it on the Internet.
It is not uncommon for crohns patients to also have another autoimmune disease such as AS. But that doesn't mean you will automatically get it either. Maybe your doctor can draw blood for tests and find out if you have the immune markers for it and others.
Good luck and glad you found the forum!:rosette2:

 

[Clash]

Generally, khashayar, you will experience joint pain and lower back pain that persists for more that 3 months and it will lead the GI to send you to a rheumatologist for xrays(although MRI is better because it takes years of damage for joint issues to show up on xrays sometimes) and run blood work especially for a certain test I can't remember exactly what it is, HLA-B27 I think. Beyond AS there are other types of joint pain that can occur with Crohns, several types of arthritis so if you are having joint pain and your CD meds aren't helping to straighten that out I would go to a Rheumatologist anyway.

Remicade does carry some risks but if you look at the risk for a normal person walking down the street to get lymphoma it is like 2 in 10,000 now if this person is on Remicade the risk does double but that means now your risk is 4 in 10,000 which is still really rare. Remicade can make you more susceptible to fungal infection and you should avoid live vaccines, people with TB or flu but it doesn't actively limit what my son does during any given day.

There are people that do have allergic reactions to Remicade while having it infused but they can give benedryl(possibly called Acrivastine in Iran?) which is what they have done with my son and he hasn't had any problems being infused. He is infused in a GI lab and so if problems were to arise there is medical staff there to intervene.

Now my son is 15, so we haven't had to face the factors of smoking, drinking and I think you mean coffee. Well studies have shown that smoking is bad for CD, and supposedly drinking although there are some posters that do not have problems with either. CD can be very individualistic what some can't tolerate others can. Coffee is one that some people can't touch and others have no problem with.

You may want to browse through our treatment forum, there are alot of threads there about Remicade as well as the other meds used with CD. Also if you notice some of the words are highlighted in the above posts. If you click on those words they will take you to our wiki forum, which has very credible info on each of the words highlighted. You can also use the search function at the top to search certain terms in the wiki forum or go directly to the wiki forum from the main page. Each term is defined and information is given as well as sources for the information, it also lists threads that that word has appeared in so you can browse through those as well.

You may want to browse through our diet forum to see what diets members have had success with in dealing with CD and our supplements forum. I wish you the best of luck in getting your CD under control and I'm sure other posters will be by to give you more information.

 

[khashayar]

@Ckt,Clash : Thanks a lot for replying. yesterday i went to see my doctor. he said i'm doing well. he told me i have to stop taking some pills including pantoprazole, rifampin and etc.
Now i'm only taking Asacol HD, Nexium and Prednisolone.
After that i went to see a rheumatologist, he wants to do some xrays and tests including HLA. I'm terrified about the resault !!!
once again thank you for your answers !