General help request for anyone who will listen.

[HarryTheMoose]

Hello everyone!
My name is Stephanie, though many of my friend's call me Harry. I was diagnosed at 12, Look like I'm 14, and am in reality now a very frustrated 21 year old.

I signed up here today because after scouring the internet, foundation websites, as many resource links I could find.. I couldn't find the information I needed, and I was hoping some friendly people with more experience than I have could help me out telling me their advice, experiences, or maybe even answer my questions or tell me who I actually need to /speak/ to about these things. I also apologize, because this is probably going to end up a very long, very /confused/ wall of venting, stupid questions, and generally dumb /stuff/. THAt said, I guess I should get started.

A brief history. As I mentioned, I was diagnosed at the age of 12. My Crohns Disease was really bad by the time I got in, and the doctor told me I nearly died. I've been in a few flare up since then, one a couple years after my initial diagnosis, a period I went off my meds because they were hurting my more than helping me, and after that.. by the time my symptoms started to return, the Children's hospital told me I was too old to go back and left me doctorless. My own stupidity and depression kept me from findng a new doctor after that, and over years my symptoms got worse and worse to the point that I'm at now, in terrible pain waiting for a stupid specialist. This last year I've been through one who didn't know what he was talking about, and now another that I'm still waiting to see. I've been on steroids for a good 8 months now, perscribed to me until I could actually see this specialist, and am trying Imuran again despite it not working the last time I was on it. I've never had any surgery, had a couple blood transfusions, and that really about covers it. That said, I guess that leads me to my first question!

Medications. Beyond Remicade, which I really don't want to be tethered too, My new specialist claims the only option out there for my Crohns Disease is Imuran. If that doesn't work, he says that's all I can be on. Is that true? THe previous specialist I went to, despite being a moron who blamed me for my disease and told me that I was stupid for making pained noises when he jammed his fingers into my gut, said /one/ thing that made me hopeful; that these days, there are so many new medications for Crohns Disease compared to years ago when I last took medications. It confused me when the doctor told me there were only two options, and I figured that couldn't be right! Unfortunately I wasn't able to ask, He didn't have my full medical history and since going into my flare up my Memory has been going downhill. I'm not sure if that's related to crohns or not, but all I know is my recall has gone to crap, and unless I'm reminded of things I can't bring them up on my own most of the time. Long story short, Is there any other medications out there I should be asking about?

The rest of my questions are a bit more general. When I was diagnosed, I was never given anyone to talk to about my disease, or any resources for more information. Everything I know about it is little comments doctors have made, my own personal experience, and what I read online. Who is best to talk to when you have questions about general living? And on that, let me ellaborate the sort of questions I have, that maybe people here could even help me with.

Working with Crohns Disease. Also maybe more importantly, Carreer choices. I'm not sure.. who I should talk to about this, because as a 21 year old who had to drop out of school at ninth grade due to pain, I'm at a loss. There are so many things that I'd love to give a try to, but when you're unable to walk or stand for more than minutes at a time on a good day, and you get around by being pushed in a wheelchair because you have no energy, I'm not sure what my prospects even are. One thing I absolutely love, and what really hit me tonight that caused me to come here to ask people these questions, is when I realized that this passion I've had for GOOD food, the food network, everything restaurant and how EXCITED I've always been over Home Ec in Middle school and watching people cook.. how I'd /love/ to turn that into a carreer. Upon realizing this, It hit me that I never could. Not only does heat make me feel ill even in remission, the idea of putting myself in that position even when remission comes around is terrifying. ANY Job where I have to be on my feet is terrifying. When I fall into a flare up, maybe it's because of bad care over my life so far, but I can be out of commission and in pain for years at a time. What employer wants to hire someone who has bad days for days, weeks, or months? Years? I don't.. understand how I can work. I know that a lot of people with Crohns do amazing careers, but I don't quite understand how they manage, and I want to learn and talk to people who understand and can help me figure this stuff out. Imagining pushing myself to go to school to be a chef, going to france to study? It'd be a dream, but then imagining later on in life, getting older, going in to flare ups.. I imagine the pain, how standing in that kitchen will feel, what it'll be like when I'm crying rolled into a ball in pain on my bed and I have to call in that I can't move. I have social anxiety at the bestof times, And even thinking about it makes me feel ill. I want to go to school, I was that kid who /loved/ school, and I want to get my GED and go to college but before I can I need to get out of his pain, and even then I don't know what to do with myself. If I had someone to talk to about this.. I just, I'mnot sure. Counceler? Social worker?

My.. last question now that I've rambled, actually, is sort of related. Disability with Crohns Disease? Now, I'm in Canada, British Columbia to be exact. I'm currently on Welfare with PPMB (I believe that's what it's called, Persons with Persistant Multiple Barriers.) And am waiting on my doctor to fill in for actual disability. That said, and maybe there are better people to ask about this, but is that sort of thing perminent? Every story I read with people who work, they talk about how hard it is sometimes and going in to work even though they're in agony because they need the job. I'm terrified of it. What I'm on now works in the way that If I chose to work, I have a set amount I'm allowed to earn outside my check from Welfare, and I'm wondering if disability stays your entire life, or if they don't count Crohns as that sort of disease. It's so tricky, being fine for years and then suddenly being out for months or years, and I think about losing my job, and I wouldn't blame employers! I feel stupid asking about this here, and you're all welcome to ignore it. I'm sorry!

I lied, there is one more thing. Memory problems, and trouble with words or stuttering. Is there any link to that with Crohns Disease? Especially when typing, since my flare up has gotten worse I've gotten progressively worse with writing words wrong. It's not a spelling thing, and the words don't even have to be similar. I'll go to type word, and it will come out wild, for example. I've started doing it outloud sometimes, and stuttering a lot more than I used to. I've had it years, but it's gotten to the point where it's almost everytime I type, and gotten verbal sometimes. I've ignored it this long, but I'm thinking of asking my doctor about it the next time I speak with him. It's starting to get me really worried.




In any case, that's my long rant.. word.. thing! Please ask questions if you want to, I realize I was extremely vague and badly worded in a lot of cases and I'd be happy to attempt to answer anything to my failing knowledge. I appreciate anyone who suffered through this!

Harry.

 

[KayleighMeek]

Welcome to the forum it's a great place for information and it is really useful.
Have you only tried imuran before or have you tried other meds? There are many different types and instead of remicade some people choose humira which does the same job but is injections that are done every one/two weeks, this makes it a lot easier as you don't have to keep going in and out of hospital for infusions. There is lots of information about the different types of medication in the treatment part of the forum.
I understand your worries with work I always worry about what my work think when I am off sick but they have been very supportive and when I am well they know I work hard and it hasn't held me back in furthering my career. The only thing I have has to put on hold so far is studying I don't want to put to much pressure on myself as stress is a big trigger but I know one day I will get there however long it takes. Hopefully once you start a treatment you will feel that you are able to go on with your chosen career.
Sometimes I find it difficult to think straight when I am in a lot of pain or if I have got a lot going on. I ramble and my thoughts get muddled it may just be that way because you are sick and dealing with a lot of stuff at the moment it takes a toll on you mentally as well.
I hope you can get this sorted with the Drs soon and can start feeling better.

 

[HarryTheMoose]

Thank you for the reply! I really appreciate it.
As for meds, I was on Asacol when I was first diagnosed, and eventually was switched to Imuran which seemed to stop working. I may ask about Humira during my next appointment and see if that's even an option for me If the Imuran doesn't work (Fingers crossed that all I need is pills, and it starts working for me again.) and see what my doctor says. Sounds a lot better than Remicade, that's for sure! It's good to have options.

 

[Clash]

Welcome to the forum! As Kayleigh stated there are a number of drugs for the treatment of CD. If you look at them as a pyramid the milder drugs at the bottom the stronger drugs at the top they would go in this order:

Most of the time a short course of Prednisone is used to get the inflammation under control. There is also a newer steroid, Entocort that is less systemic

The bottom of the pyramid would be the 5ASA's like asacol, liada and pentasa.

Next, you would have the immunosuppressants: Imuran/6MP and MTX, these require frequent blood tests to make sure there aren't any problems being caused by the meds and a check to see if they are at theraputic levels. It can take these meds up to 3 months to be effective.

Then, you have the biologics Remicade, Humira, Cimzia. They are Tnf-a blockers, Remicade is given by infusion, Humira and Cimzia by shot. A lot of people get relief quickly from these but they are not a medication you can stop once you start feeling better. The reason being that your body can build up antibodies to the drug so if you stop then try to come back to them your body will no longer respond.

Sometimes the GI will start you off on a combo of Imuran or 6MP or MTX and the biologic. There are studies that suggest the immunosuppressant helps to suppress antibodies to the biologic.

When you are in deep, stable remission with full mucosal healing you shouldn't experience symptoms from your CD. You should also get all of your vitamin levels checked as crohnies can be deficient in some vitamins and that in itself can create symptoms.

There are also Extra Intestinal Manifestation (EIMs) of CD, like joint pain, eye issues, skin issues that can be either active when your CD is active or even active when your CD is not, these also need to be addressed by the appropriate doc(ie. skin-dermotolgist, joints-rhuematologist etc)

I hope you are able to find some relief soon!!

 

[Trysha]

Hi Harry
There is a Treatment section on this forum and you may like to take a look at members experiences and also lots of information regarding the treatment options.
Remicade can be swiftly effective and you may like to take another look at it.
There is also Humira where you are taught to give yourself the injections and which you may find convenient.
You certainly need treatment as well as a good GI with whom you can relate.
I am sorry to hear that so far you have not received the support and encouragement from a good GI set up.
With the appropriate treatment you could enjoy a much better way of living.
Also with the proper medical support you should be able to enjoy your life and perhaps undertake some studies that interest you.
Until you receive some treatment your body and mind will not function at an optimal level.
You could perhaps think of some psychological help, maybe your GP could make an appropriate referral.
Your mind and body need to be in tune with each other and then you will start to feel much better.
There are no magic bullets as far as crohn's is concerned but Remicade and Humira come close for some crohnies.
There is no such thing as stupid questions on the forum, it is for people to vent if they wish and to seek information.
There is loads of info to be found here.
Members also share information about their doctors there is another section where you will find this information.
Feel better soon
Hugs and best wishes
Trysha

 

[HarryTheMoose]

Clash, Thank you SO Much for such an amazing list of the medications, that was much easier to understand than most things I've read!

I definitely experience some of the other symptoms, joint and muscle pain, eye trouble when I'm feeling /really/ bad to the point where I can't see for short periods of time. They aren't as bad when I'm in remission (The eye problem is only when it gets pretty severe) so I don't give them much thought. I'd ask my doctor about it though, see his thoughts. As for meds, I have a much better list of what to ask about the next time I go to my GI, and I'll look more in to it!

Trysha, Thank you as well for all of your advice. Remicade is definitely something I'll consider if nothing else is effective, but something like Humira even feels like I'd personally feel a bit freer if given he option. A good GI is something I'm lacking. I said in my original post that I was waiting to SEE my actual GI, because the last time I went in to my "new" GI that I've been waiting for, she was away on vacation and I got to see her replacement GI who did nothing but make me feel bad about myself. He laughed at me when I couldn't remember my history properly, I can remember some things well and others vaguely and described my Crohns and medical history as best I could, but when I wasn't sure on dates or details he laughed and acted like I was stupid. I apologized multiple times, I asked him if he had my chart which is what I expected him to have and he only had a partial history. He also get really upset at me when I told him I was on Prednisone, and told him I'd been on it since November at 6 pills/day. It's the only thing that's kept me somewhat stable in the mean time, I was in the hospital multiple times before going on it. But no, he told me that that was wrong, that I'd been on it two years which I know for a FACT That I have not been, the date of going on the steroids is something that Is burned into my mind, purely because I hate them with all my being, and I was also doing a charity project around the time I started taking them. Anyways, I'm rambling but the guy was /really/ awful. He wanted me to get a colonoscopy, but after leaving the specialists office feeling like complete worthless garbage, I called and told them I'd wait to speak to the actual GI until I go ahead with it. I realize that I'm going to have to have one regardless probably, but I'd feel a LOT more comfortable speaking to someone who has my chart and understands who I feel comfortable with than going in for a test given to me by someone who just mocked me for my memory.

 

[Trysha]

Your GI experience shocks me to the core.
How absolutely awful to have to endure such demeaning attitudes.
Have you taken a look at DR Gunn's pages in this forum.
he is conducting what looks like a promising approach to treatment of crohn's based on the innate immune system.
If you go to the top of this page you will see Search, put his name in there and it will bring you to the information.
If you write to him in the forum he will be very helpful to you.
To my mind this is the way to go for treatment with little or minimal side effects.
Did you take a look at the doctor listings in the forum?
Better to find a recommended GI from a forum member if you are able to find one geographically suitable to you.
I also found the response by CLash an outstanding presentation and advice well worth following..
Hugs
Trysha

 

[Trysha]

Hello again,
Dr Hal Gunn is listed in the Doctor Directory and is based in Vancouver.
His website will give lots of information on the clinical trial.

Trysha

 

[Twiggy930]

Dr. Bressler in Vancouver is very active in IBD research.