My Story - and help.

[jasonma88]

:sign0085:

Hello Everyone. I need help.

I would like to ask for your input as I have very limited knowledge with Crohn's and the symptoms and its effects.

I am 27 years old Asian male just recently diagnosed with Crohn's disease. I was told by my doctor that it's a rare case for Asian/Chinese. I had some blood with my bowel about a year ago and have developed some hemorrhoids at my anus.... However, I do not feel any pain and very seldom do I have any uncontrolled bowel. At the moment I only need to use the washroom 1 or 2 times per day and I don't recall having extreme bowel movements.

I did a colonoscopy last June and told that I had some inflammation and was put on 2 months of Pentasa. I did a colonoscopy again early this year and was told that i had some inflammation in another part of my intestine. However, I have not felt any differences ever since I visited the doctor. Now very seldomly I encounter blood or blood stains as I wipe.

I inquired 2 GI specialists and both advise me to take either Humira or Remicade to reduce my inflammation and one said it would allow the hemorrhoids(bumps ?) to go back to normal. However, I am very afraid of the side effects - I have read many scary things about Remicade and who knows the long term effects. I am only taking a off the counter Probiotic supplement at the moment. I have been going to a Chinese doctor and has given me herbs to soak my feet, stomach and drink so that it will make my body more healthy. I am not sure if that has anything to do/help with Crohn's though.

I want to learn more if there are other ways to control my Crohn's, mainly my hemorrhoids, and are there other routes to maintain my Crohn's - ie: Chinese herbal medicine, natural path, or others so that I don't have to use Remicade/Humira ? I guess I really don't want to take Remicade or other drugs because I really don't feel anything wrong/pain at this moment. Anyone had same symptoms or similar feeling that can input ? Will it go worse ? Am I currently in remission ? How can I tell ? I am still eating regularly but no raw stuff, no alcohol, never smoked. Anything else I could do ?

I really need your input and any responses are welcomed. I thank you all.

Please help me out as I am very concerned. Thank you all.

 

[Crohn's 35]

Hi Jason :welcome: to the forum. We all understand how you feel. Having strong meds when you dont feel you have to be on them but it depends on where and how bad the inflammation is. Probiotics are good, it helps a bit but when I had inflammation I was put on Entocort, a milder version and less invasive than Prednison. If your Gi recommends a biologic in my opinion only, I would start with Humira, alot cheaper and is a human protein rather than mouse protein in Remicade and is milder to most.

I can't help you with the hemmies, havent had those in ages. Some one here will chime in. Hope you find what you need to heal. Just a warning if you decide to go to a naturalpath becareful, most Canadians dont take to kindly to them and they could drop you. Many Canadians have had this problem.

Ensure can help, try to rest the bowels as much as possible and stay away from packaged foods. Sorry not much help, others are here to help out as well.

 

[Cookie]

Hi Jason...welcome to the forum. I just wanted to address the question you had about knowing when you are in remission. Remission is a very tricky thing to define for Crohnies. Some people believe you are in remission when you do not have any symptoms that affect your quality of life. Others believe that remission can only be confirmed by the absence of any apparent active disease during a scope. So you may have a situation where someone can feel great but still have inflammation and another where somebody feels awful, but their doc says thay are in remission. Because of this conflict, I just quit trying to figure out if I'm in "remission" and focus on trying to feel well.

As you look around the forum you will notice that different things work for different people and there are no hard fast "rules" for managing your disease. I think you are on a good path by trying to figure out what natural remedies work for you. I do not blame you for wanting to stay away from some of the stronger drugs like Imuran and Remicade. I have been on them both and have not experienced any major side effects, but I would rather not risk it if I don't need to. I think it's important to remeber that there is no "cure" for Crohn's, so the drugs that are prescribed to us are intended to "manage" our disease. If you feel that you are doing this well enough with your current course of treatment, then I would just roll with it. That said, there is a whole bunch of great advice and experience here worth looking into. Again, it is all about finding out what works best for you. Best of luck!

 

[kjhngisd]

Probiotics are a great help. Lots of people try the homeopathic thing and it seems to work for some, but for others the disease is just too strong.

The hemorrhoids -- are you sure that's what they are? It's also common to get skin tags in the same area that look and feel like hemorrhoids, but will continue to grow.

the meds:my wife is on Cimzia and has had no issues or side effects. She tries to do a holistic approach and combines probiotics and messages and other things with Cimzia and other meds. The natural path cures dont seem to impact the Crohn's but they do help with some of the side impacts.

I think there's a thread on the forum for natural cures and dietary ways to address this. It's a tough call. If you don't feel bad, then you may be ok without any major issues. But you have to be careful. If you feel ok, that doesn't mean there's no damage. Swelling or ulcers in the digestive system can cause cancer or fistulas or other things. So be careful.
Just because you feel better, doesn't mean you are better. But Crohn's is different for everyone, so you need to find your own path

Good luck.
--kevin

 

[Crohn's 35]

my wife is on Cimzia and has had no issues or side effects. She tries to do a holistic approach and combines probiotics and messages and other things with Cimzia and other meds. The natural path cures dont seem to impact the Crohn's but they do help with some of the side impacts

Sorry but us Canadians don't have Cimzia here, and they are not sure it ever will. Just thought I would chime in on this subject, if it does come here I will try it, but Remicade put me in ER with extreme pain!

 

[jasonma88]

Thank you so much for all your input.

I understand it might become worse but from reading the comments of Remicade.. I am afraid I might end up being sick or need to go to the hospital more often then normal. I work at many nursing homes and with children population each week so I don't know how that's going to turn out.

kjhngisd, my specialist told me that i have hemorrhoids and have developed fistulas in it... I don't really know the terms but it's like having tunnels inside the bumps ? I do not have any apsees (however that's spelling is) when I did an MRI though. Is that bad ? I think I have another bump slowly coming up.. I really don't know if it's bad or what..

Like I said.. I have talked to two GI specialist already and both of them have advised me to use either Remicade or Humira. I asked for Remicade.. but I haven't signed anything yet.. I might speak with my specialist again about delaying this drug..

The specialist that did the colonscop with me the 2nd time also told me that it DOES NOT seem like I have a mild case.. She said it's moderate to severe. BUT I HAVEN'T FELT ANY PAIN.

Anyone could talk about Probiotics more ? I am currently taking a 10billion one.. I saw that there was a 60billion one.. is it necessary ?

Also, I really want people to comment on how badly will Crohn's become.. as I am soo new to this.. and I have been living life normally after having a few messy bowel... so..

Please help.

 

[David]

Hi Jason,

I'm glad you joined!

In addition to what has already been said, you may want to check out our elemental nutrition forum. It has some interesting means of inducing remission.

I wish you all the best and we're here for you anytime.

 

[jasonma88]

kjhngisd,

you were saying that Swelling or ulcers in the digestive system can cause cancer or fistulas or other things. I know I might feel okay but things might still be going wrong inside.. but what are some of the symptoms if things start to go bad ? Will I feel anything ?

I weighted myself today and it seems like I'm almost the same weight as before.. but I have a little bit of weird pinch-like feeling at the bottom of my left chest bone (belly area). I also feel a little bit of a larger bump on another part of my anus (I have to obvious ones on the left side), and one that was hidden before on the right.. and the right one seems like it's a little bit bigger ?

Pen: Thank you for all your input. As you have mentioned I am quite overwhelmed when I don't feel any symptoms yet I have to be put on a heavy drug. I think at this moment, I am most likely to try other routes rather than to take Remicade or Humira.

I have been discussing my situation to a lot of my co-workers who are health professionals (physios, physio assistants, nurses, etc) and except for doctors, everyone told me to take Remicade or Humira only when I flare.

My only worry at the moment is that both of my specialist told me that my Crohn's will PENETRATES my skin wall or something, and that I don't know what I can do/feel as they were saying that's why I got those bumps at my anus.

Please continue to help answer my questions. Thank you

 

[jasonma88]

Anyone else could provide me with more input ?

Like I was saying, I am currently taking probiotic supplements only and haven't started Remicade yet. I do not feel any different and I still have regular bowel (1 or 2 times a day).

As I have read from other posts, people with Crohn's disease tends to get worst over time ? Is that true ? My only concern right now is how will I feel some of these symptoms as I don't feel any pain. I am also worried about my fistulas/herrmiords/whatever those things are on my bum. Will they still develop even when I don't have any flare ups ?

Please answer my questions. I am extremely worried.

As for Canadians, as I am self employed, what are the best measures if I do need to use remicade/humira.

 

[Ctina]

Hi..I am new to this site, but not new to having Crohns. I was diagnosed in 1994 and have been on different meds on and off since then. I would say that at times I was in remission, but always while on meds.
I am currently taking Humira every other week. It's an at home injection pen and I feel pretty good. Unfortunately I have been suffering w/ Hemroids since Oct, ugh! Not a fun thing to deal with, but didn't think it had anything to do w/ Humira until I just started searching for info about it. I don't have any other symptoms at all and think it's working for me.
More importantly, I don't recommend Remicade. I became very sick after being on it and was in the hospital for over a month. I ended up with Absesses in my liver that they were never able to diagnose. I think they finally clarified it as "Fungus"? I did have two fistulas that were open to my lower body cavity and my liver was trying to filter out the bad stuff there....but I believe I became as sick as I did because of the Remicade. I had a very long surgery to remove 1' of my lower intestines (that was the most diseased) a bowel resection, liver absess removal (13 that were the size of golfballs), removal of both my gall bladder & appendix and left w/ a scar from my sternum to my bikini line. but I am alive and happy to be here today!

To back up what others have said here, I agree that you need to be on drugs to maintain your health. It's possible that you have a high pain tolerance like I do, which can be dangerous because you don't know how sick you really are. Listen to the Drs and if you don't like the Dr you go to now, find a new one, you need to trust them, you are putting your life in their hands. I do know that there are many people living well taking Remicade and that is good for them, i'm glad. But I feel I can never recommend for anyone else to take it because of what happened to me.

I can't say anything about the hemroids or what is happening to you down there, since this is a new issue for me as well. My crohns affects my digestion, i have "D" most of the time I go to the bathroom. I can't eat raw veggies unless I eat salad w/ a meal. Spicy, Fatty or Fried foods are a no-no for me. When I flare up, I am running to the bathroom all the time and feel very bloated, I loose weight, feel tired, and sometimes get headaches. I usually also get pain in my illieum of my intestines. Right now I am doing well...I will always have Crohns, but as long as I can keep it under control, that's the most important thing.
Wishing you the best with your treatment and care.
Ctina

 

[Ctina]

BTW - the Dr hasn't put you on any meds at all? This seems strange. Usually when I would have a flare they would put me on Antibiotics and Prednisone (Steroids) to get the inflammation under control. Some Dr's are not taking this route anymore.

 

[jasonma88]

Hello Ctina,

Thank you for responding to my post.

Yes. My specialist told me to apply for Remicade, but in the mean time did not prescribe me with any medication at all. It's a long time to apply for Remicade as I am a self-employed person and it's not covered in Canada, I have no clue how much this would cost me.

Did you say Remicade made you have fistulas ? I don't really know what the differences are between Fistula and Hemmoriid. I think I have Fistulas. I also heard from my specialist that Remicade will make the fistula go away !? That's not true in your case then ? I read both Remicade and Humira are really really bad for you.. I haven't tried anything other than Pentasa pills but my specialist told me to use Remicade because she knows that the other pills won't work for me. It's not that I don't trust her but I just don't want to use these meds and stick with them for the rest of my life.

To be honest, I am very worried about my case - since I don't feel any pain nor difference in my daily life. I have been looking into my stool everyday though.

I am taking Chinese Meds as I am Chinese, but the doctor only mentioned that she will clean my stomach and slowly build it's immune system inside. I am not sure if that's similar to the naturalpath or whatever those are called.

At the moment I am just trying to keep a straight diet by eating healthy and taking probiotic pills.

I want to know if anyone has similar experiences like me and let me know if Crohn's tend to get worse over time ? Will I still get fistulas if I'm not inflamed ? I don't want any more of those fistulas to get into any where else in my body.

How often/long does it take to get a fistula ? I think I have had the 2 since last year but it doesn't seem like it's bigger/smaller. Please let me know about this too.

THANKS !!!

 

[jasonma88]

Just one more thing to add,

If I do decide not to take any meds at the moment, are there ways to monitor my body changes other than doing the Colonoscopy ?

Will that be blood test ? Stool test ? Please let me know.

 

[Ctina]

I think you need to write all ur questions down and go see ur dr. I can only give u advice from my experiences.
my fistulas were inside my intestines. I had at least 1 when I started remicade. Remicade is supposed to heal fistulas. Not sure how long it takes to get one either...guess it depends on ur state of disease.
there is blood work testing that can check your white cell counts that will be elevated when you are having a flare up.
I hope I answered ur questions. Get well!
ctina

 

[Marcy]

jasonma88

Just like there are so many folks here with CD there are as many contradictions in doctors.
Me personally had problems for 5 years w/o blood stools or weightloss, I was told it was all in my head lol..No it was all in my stomach and bottom. SO finally a surgery for adhesion's got me the diagnosis I feared the most. That was almost 7 or 8 years ago. My GI had the conservative approach with me it worked for about a year or so then all at once I noticed increasing pain where they did my previous surgery. Another scope showed mildly active crohn's. Still no medication to help,no one would listen when I told them what I was feeling.

So now new doctors and medication. I am on sulfasalazine 500 mg 4 times a day and I have to admit I am feeling a bit better. My Uncle does Remicade every month but like you those strong drugs scare me. So until mine is not responding to the new meds I have started will I then look into those. As for me I had very little pain in the beginning years just constant bathroom trips and a sore bottom. I always carried tux pads when I was out then they got to tough to handle now I use baby wipes for cleaning my bottom after bm. As for your hemmies have you tried preperation H or the steroid creme to lesson inflamation in those? I hear it is like a facial for your bottom and works really well.

As for fistules I had them inside around the ileum and cecum. Luckily they were caught before major damage could have been done. Personally for me I lost a lot of my issues when they put me on 2 antibiotics Cipr and flagyl.

I wish you the very best in your treatment,just pray you don't wait too long for some kind of help with the inflamation because that is what really needs to be controlled early on.

Warm regards

 

[jasonma88]

I am soo scared now. I can see that a few of you haven't been feeling anything at all at the starting stages of your Crohn's but it seemed to go worse in time. Is that the case ?

I don't know what else to do and I don't want to take Remicade... =(

I am also afraid that I will have more of those meat bumps at other parts of my body/intestine...

Anyone could talk more about their experiences ?

 

[SarahDub]

Jason, I'm new to Crohns too and I also was diagnosed with having a very mild form but progressively have been getting worse over the last few weeks/months. I know how you are feeling, i'm terified at the thoughts of what is to come. In my case the Crohns is hereditry and i've seen my aunt and cousin suffer for many many years with this diease and it scares me knowing what i'm going to go through.

Although I don't have the knowledge or can help with my experiences as its not extensive just know that i'm here if you need to chat, its a tough time for any newly diagnosed person to be going through.

I hope your feeling good today, i'm having a good day (first of 10) pain levels are only at 3or4.