My Crohn's

[crazycanuck]

Hi guys I'm new to the forum and I guess going through a bit of a transition with Crohn's right now. I was diagnosed 2 years ago almost to the day with Crohn's Disease and about a month ago switched doctors because of some doubts with the one who had diagnosed me. I have been very impressed with my new doctor but she strongly believed I was on the wrong medication, which I tend to believe because I was still sick very often from the first pills I was on. I was originally put on Asacol at 9 pills a day which never really worked, my doctors only solutions to my problems were to either increase the number of pills or steriod treatments. I decided I did not want the steroids seeing as I play a lot of high level sports and this would not mix well. I decided to seek a new opinion which is why I have changed doctors and am now working my way up in the dosage of Imuran as my imune system permits. My doctor says because of the Asacol a larger region of my Crohn's was left untreated for a significant period of time and has more than likely progressed farther and this could be the reason for me being sick more often lately. I have noticed in the now 3 weeks I've started Imuran that I regularly feel like I will throw up and I ended up throwing up a bit of blood yesterday and passed out in the morning. I do have a bit of a history with passing out but could these be related to new meds? Will these work out over time? I am going to ask my doctor all of these questions as soon as possible but I was wondering for those who have much more experience with this if they have any advice. Oh and I do take those pills at night right before bed with food and milk. Thanks for the help.

 

[Jennjenn]

I have not taken the meds that you are on. But hopefully some others on the forum may be able to give advice. The only advice I can think of is if you are throwing up blood not to wait and call your doctor immediately.
I also wanted to welcome you

 

[crazycanuck]

Thanks a lot for the welcome and I went to see local clinic yesterday after it happened and just went for bloodtests this morning to see if anything is wrong.

 

[Crohn's 35]

Aha, I see you updated where you live... I knew that a Crazy Canuck had to be Canadian, and I as a fellow Canadian welcome you to the forum.

I understand you dont want to be on steroids, no one does, sides are awful. Imuran I cannot take, I tried all the same type of immunosuppressants and I get sick and my liver takes a dive. Last Christmas I was sick and no more, had enough of that. I stopped taking it. I have been on Pentasa but not Asacol, it is for milder cases, and also have been on Salofalk which is the same type, they dont work for me either. When you are vomiting and especially blood that is not good, you should see your GI and get a scope from mouth to butt.

Sometimes blood work doesnt always work for everyone, but it is a start. Do you have a Gi in your city??? Watch your diet too, as most University students (my daughter is in Uni too) and the choices are not to great but avoid pop, and dairy.

Glad you found us, we all have different experiences and on different meds. You could try Remicade or Humira, ask your doctor, no one should be in pain and vomiting.

 

[crazycanuck]

I do have one close yes I live in lower mainland of BC so there are dozens within an hour driving. But I am seeing her as soon as possible. I was just wondering if there was a transitional period of going from a weaker med to a stronger one. I do have a weak stomach so I was wondering if I could be adapting to a stronger med. But thanks for the help and I do limit all caffiene, sugar, and especially ice cream to very little amounts. Although as a sugar addict and young male this is easier said than done. Thanks again for the quick replys on here. Just while looking around the site here I'm getting replies which is very cool because I didn't really know there was anything out there like this. I wish more people knew and used it.

 

[Crohn's 35]

Most doctors put you on mild, then mild to moderate and then moderate to severe. Some insurance companies wont pay for the Biologics like Remicade and Humira or Cimzia because I remember when I was on Remicade it was $4,100 an infusion and they want you to exaust all other meds before those drugs. I liked Humira for a while , one needle every two weeks and no meds, was nice.... for awhile.

You will meet alot of other Canadian Crohnies and many from around the world, just like us! Ask any questions maybe we can be of help. This is truly a great forum! Lots of good people here!

 

[shazamataz]

Hi Canuck and Welcome. I hope the new meds start to work for you soon so you can enjoy Christmas!

 

[DMS]

Yeah, someone from my corner of the world - we're practically neighbors.
Welcome, did you switch GI's because of going away from a pediatric GI and on to a regular GI? Just wondering because my son is 16 and I'm assuming he'll have to do that within a year or two.
Can't help you with the meds question, Imuran is the one that we decided against and went with LDN instead, but from what I've researched, you've got a ways to go before the Imuran should kick in, possibly the milk is also giving you problems, it seems to be a problem for a lot of people with Crohn's. I assume you're getting regular bloodwork since starting Imuran to make sure your liver function stays good. I'm sure someone with more knowledge than me will give you some info soon, lots of good advice on here.

 

[starstruck]

The Best Cure

The absolute BEST thing you can do for yourself in this situation, where you can hardly rely on the medication to make you feel better, is to rely on your diet. My first doctor told me that diet did not in fact affect your health, in the aspect of Crohns. She was wrong.
There is a Crohns specific diet that is better than any medication you will ever take. It is a very hard diet to be on, because people take it as being very limiting. And in some ways, yes, it is! But the thing people don't realize is that it opens up a whole new world for you. You have to be strict about it and not go off of it for it to really work, and within 1 day you will notice the difference.
The diet is not simple, but if you really cannot go on it, it can act as a quick cure to make you feel better (like after a Christmas dinner where you can't get away from the foods you aren't allowed to have). You can't have glucose, fructose, soy, dairy (VERY BIG CONTRIBUTOR!!) sucrose (BIG FACTOR!) wheat, starch, and other things like corn and carrots. It seems like it's a lot but it's really not that much. There are so many substitutes for the things you can't have. Honey is amazingly good, and its completely ok with Crohns! It replaces the sweet taste you'll need in things like ice cream (yes! you can make homemade ice cream! if you want to know more, just toss me an e-mail or reply)
You can't have dairy but you can make yogurt, as well as mayonnaise. There are so many things open to you that will make a noticeable difference in your health.
Aspartame is a substitute in drinks for sugar when you need soda. You still shouldn't have it, but it's better than the actual sugar in the soda. Also, the caffeine in drinks can make you feel sick to your stomach, so try decaffeinated from now on.
There's a lot more I could say but I don't want to make you read TOO much. If you're interested in this, here's a great cookbook: Recipes for the Specific Carbohydrate Diet (author is Raman Prasad)
Also, my doctor (who is from Stanford) has said that if you can stick on the diet for at least a whole year, the Crohns could effectively disappear, and you could go off of the pills! Of course they'd have to test for it before any decisions made but it's the truth!

 

[crazycanuck]

Im sorry as great as that sounds that will never be practicle for the life I live. I live a faced paced life with much of it spent playing sports. I will never ever be willing to give up sports to Crohn's disease and a diet like that definately would cause them to be taken. I play quite competitive ice hockey and am considered a light weight on my teams. Taking away all sugars, dairy, and such would cripple my ability to build on my already fragile frame and would make me a very unattractive prospect to any other teams. I know what some people do is fascinating and jaw dropping to what they have given up and what they will do to conquer their disease. Mine is not that severe and Crohn's can take away many of my party days, my dry grad from high school, and a variety of other things I'm sure you all are aware of, but one thing I will never let it take is sports, its one of few things I owe my life too and a diet so strict and so limiting which it really really is would not be practicle. This is also the reason steriod treatments are completely out of the question. Thanks for the advice and sorry for a bit of a rant there but I haven't had a very good night here. I do thank you for trying to help and all the best with your disease.

 

[imisspopcorn]

I was on Imuran/azathioprine for about 6 months. Just curious, did you have the blood test done to see how your body will metabolize this medication? Not every one can tolerate this med. Although occasional vomiting could be caused from something else, keep a eye on it because you might not be able to take this med.

I needed an acid reducer type of med like Acidphex(OTC: Prilosec, zantac) when I was on a higher dose because I did experience epigastric burning and pain. It's so hard with this disease to know if it's the disease or something else causing problems. If you are generally feeling like crap(sorry), but you know what I mean?? Call your doc because it really could be the immuran. Good luck. I hope this info helps

 

[Chuck2008]

Hi Crazycanuck,

Like you, my main priority has been in finding a medication to take that wouldn't affect sports performance. Unfortunately, there isn't one. Methotrexate would give me nausea and fatigue at least one day a week, and any of the other immunosupressants including Methotrexate have warnings to avoid activities which cause bruising (so those are out), and Prednisone (the hormones you don't want to take) causes loss of muscle mass, osteoporosis etc. Remicade looks like the best option for sports, but there's that risk of Lymphoma particularly in young adult males that I can't overlook (okay I'm not young at 39 but maybe you are?)

Having said all that, Prenisone is the best option I could find. I went on it last Christmas when I was first diagnosed with Crohns and it quickly got rid of all my symptoms (the very same day) including Crohns related arthritis in the knees, wrists, thumbs etc. I had so much energy, ate like crazy and exercised like crazy. I can tell you that I've never felt so fantastic in my life and my sports performance was enhanced way beyond what it was before I was using it. Why? I'm not sure, I think it could be because of all the energy prednisone gave me and the more agressive frame of mind. As you've probably read, one of prednisone's common side effects is psychological, angry outbursts etc. I can tell you that it HAS helped my sports.

Anyway, long term prednisone has its drawbacks. (1) Osteoporosis: I lift weights, take calcium and vitamin D supplements, and osteoporisis increase is more associated with long term use. Get regular bone density checks and you can catch any problems early. Some I'm not worried about that. (2) Cataracts/glaucoma: Get a thorough regular eye exam and they can catch these in the early stages too. Just got mine checked after a full year of prednisone and there is absolutely no change from last year. (3) Osteonecrosis: Extremely rare side effect that could result in hip replacement. Its such a rare side effect that many people don't even know about it, and its not listed on most of the drug sheets I've seen. One person on this forum has had it, but keep in mind that people who suffer the most from any disease are going to be more likely to come to these forums so forums may not be a good representation of the patient population at large. I haven't experienced the acne side effect personally, and the weight gain hasn't been an issue because I would just eat as much protein as possible and low fat/carbs.. still getting thousands of calories per day of course for sports. Other little side effects were in muscle cramps but they stopped after I started drinking a lot of Gatorade.

Unfortunately I have to get off prednisone now because its not a good drug for keeping you in remission, its only good to put your flare into remission initially. But as a first line of attack it can't be beat, particularly for someone into sports who doesn't want their game to suffer!

 

[crazycanuck]

Thanks for your opinon and I'll definately be looking into all my options with my doc very soon. I'm only 3 weeks into Imuran now and I've puked, felt nausea consistently and as I write this am having one of my worst sleepless nights ever which has been spent in my bathroom so I don't know if this is working out so well. I am however very much willing to have some of these symptoms if the drug allows me to play sports. I for one for whatever reason am not generally as tired and unenergetic as most people with Crohn's and thats not to call anybody on here lazy because I have had other problems where I know exactly what you mean however I haven't ever found myself with problems playing hockey 5 times a week. This being said some of my symptoms lately have been getting much worse than they have before and I do need some help controlling them and as of right now Imuran is not helping but I hope this turns itself around and quickly intime for Christmas. I'm not exactly sure what my next step would be interms of treatment and I have a problem with myself going in and telling her what I'll be put on next, I have the upmost respect for my doctors and what they recommened however there are things (such as the steroid drugs) which I will never go on until it is absolutely my last option. I guess I'm a little confused right now although I really do like the suggestions and I have a long list of questions to ask my doctor today actually. So I will be asking about what almost all of you have said, I'm sure she will really like this :tongue: but thanks guys its really very cool so many people are willing to help out the best they can especially when people actually know what I'm talking about.

Oh and sorry Imisspopcorn yes I'm having bloodtests every other week as I increase dosage. I had one just before I started Imuran, then two weeks in as I went to 2 pills, and now in another week I'll have another test when I go to 3 pills and then 2 weeks again another blood test and if all goes well then 4 pills a night will be my max. Also right after I puked the blood and passed out I was sent for bloodwork and I was suppose to get a call last night if anything had gone wrong with it but no call so I'm assuming I'm still ok. Also yes it is so so hard to tell if its Crohn's/Imuran or something else, I do have a typically weak stomach which could be part of my problems? However unfortunately to date besides many concussions and broken bones I don't have any other glaring health issues at all really. Before Crohn's I was about as healthy as could be. So I'm not entirely sure but what is happening now but I am calling my doctor today to ask her all my questions.

 

[mwb3779]

Hey Crazy what was happening with you on Asacol?? How did you come to the conclusion its not working. I take the 9 of Asacol plus I take 6 mp (Mercaptourine) 100 mg a day plus all the others too. The normal stuff, Pred, Prilosec, and more vitamins and supplements than I know what to with.

 

[crazycanuck]

Well basicly I was on asacol from my initial doctor and while it did help a bit over initial symptoms when I was diagnosed for 2 years I have not gotten any better and infact lately I've gotten worse. I switched doctors because I'd lost confidence in my original one and my new doc said that asacol was really only helping a small portion of my Crohn's (where the small and large intestine connect which is apparently ultra common) however the other (more embarassing) region near and including the rectum is the other area I for sure have some problems. Asacol does not treat this area and therefore its actually been getting worse which is why she thinks I have gotten worse recently. Becaue Imuran is an immune suppresent drug it will cover the entire small and large instentine so Asacol isn't really needed for me anymore. She said it wouldn't hurt to take but it also isn't exactly doing anything for me either so it was up to me and I elected to keep as many pills out as possible.

So a long story short it wasn't doing much for me and I was getting worse so they put me on Imuran which will cover everything anyhow so I don't really need the Asacol now.

 

[mwb3779]

Interesting. I'm on 6 mp which is what Imuran turns into in the body. I wonder if that's just something else new for me. I have similar issues with alot of my issues are near the end. Is it working well?

 

[crazycanuck]

Umm yes and no. I had improvement almost immediately after starting Imuran. its now three weeks later and I have a lot of pains in my stomach and get a lot of bleeding. Its kind of dissapointing and thats been for the last 3 days or so. So I'm not sure whats happening. I also passed out and threw up some blood which I went to the clinic for and they said all is good so I'm waiting on a call back from my GI doc right now.

 

[starstruck]

I'd have to say to be careful with the prednisone isn't safe to be on. For a while it's alright, it definitely builds up your immune system again and sustains it for a while. it can definitely cause more issues than it can help you, over time. such as diabetes. you don't even have to be eating for it to happen, the drug itself can cause it.

 

[mwb3779]

I have been on 6 mp for a month or so now and supposedly it takes 2 to 3 months before the full effects are seen or felt. Maybe Imuran works quicker? I'm not sure, I've heard that 6 mp is a pretty powerful effective drug. My cousin swears by it. She has CD also. I'm starting to have a little more blood now also. I'm wondering if its the food or some of the drugs. I really do hate this prednisone. I have been getting hot and then cold in a matter of mins. I wonder if that's the pred or the 6 mp?

 

[starstruck]

I have been on 6 mp for a month or so now and supposedly it takes 2 to 3 months before the full effects are seen or felt. Maybe Imuran works quicker? I'm not sure, I've heard that 6 mp is a pretty powerful effective drug. My cousin swears by it. She has CD also. I'm starting to have a little more blood now also. I'm wondering if its the food or some of the drugs. I really do hate this prednisone. I have been getting hot and then cold in a matter of mins. I wonder if that's the pred or the 6 mp?

The most likely cause for that is the prednisone. 6mp is amazingly fantastic for people with CD. It's one of the best medications you can get. The different foods will definitely contribute to you feeling better/more blood as well. It depends on how your GI tract handles certain foods. Most people with Crohns' all have to eat the same foods or stick to the same diet. Read my post above for more info on that.

 

[mwb3779]

Prednisone sucks. I have been sticking with the basic same groups of foods. I'm afraid I'll get bored with it soon though.