My story (real original title lol)

Crohn's Disease Forum

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Hi everyone, just signed up and had a browse around.. figure this is the introduction area, so it's time to dump in a wall of text, so here's my story, a bit of venting and maybe a bit of a cry for help if anyone can possibly steer me in the right direction with some things..

My health has been pretty bad my whole life. When I was young (under 6) I had constant ear infections, practically one every two or three months. Then in grade school it was lactose intolerance.

In high school, I started having chest pains and coughing a lot, even coughing up blood some times, nearly passing out from coughing fits where I couldn't breathe, etc.. All the x-rays looked like pneumonia, so that's how it was treated for months without anything getting better and no one checking for anything else.

One day I started getting horrible pains in my feet and I went to the hospital, and it turned out I was having internal hemorrhaging, but they still couldn't figure out what it was. I was admitted to the hospital and after about a week test results came back and it turned out I had Wegener's Granulomatosis and was immediately rushed to the ICU. I spent two months in there, strapped in to pretty much every machine they had.. Blood tests every hour, x-rays 4 times a day, and using huge needles to drain my lungs of the blood/fluid that was building up.. The whole time I was so weak that the doctors were scared to even use a topical "numbing" gel when doing any needlework because they thought it might be enough to stop my heart.

I ended up with a pretty bad needle phobia after that.

Later, I had a reaction to the cyclophosphamide and got lesions in my bladder that had to be fixed with a... hmm, I can't remember the name of the procedure now (it was a good 17-18 years ago) but it involved a Sharpie-size tube with a camera and a lazer to cauterize the lesions.. which messed up my bladder a little and it's been getting slowly worse and worse ever since..

I was relatively fine for a while after that, but in summer 2006 I started getting really sharp pains in my abdomen that felt like someone was stabbing me with a needle and moving it around in a specific area.. Went to the ER three times because I thought I was dying, but the tests they gave me didn't come up with anything and they just figured I was constipated.

The third time I got an apointment to go see a doctor and that was the biggest waste of time of my life. I was in and out of his office in under 10 minutes; he asked me where it hurt, if I was eating properly (I wasn't, I was poor at the time) and if I was under a lot of stress (I was), and then told me it was just IBS, that it was "all in my head" and that "If I ate properly and stopped being stressed out it would just go away".

It took me two years to finally see another doctor that actually took me seriously and did actual TESTS to see what was wrong with me. The only down side is that this doctor is fairly "cold" and "uncaring" when it comes to any issues.. Having struggled my whole life with a MASSIVE needle phobia, he figures it's just a childish thing and that I should be able to "get over it" because I'm not a kid anymore.. So I ended up going through my colonoscopy stone-sober and have been dreading the possibility of another one ever since...

As it turns out, I've got Crohn's. He gave me a prescription for 5-ASA, 2x400mg 4 times a day, and sent me on my way. Nothing about what to expect, what it would do, what side effects I could have, how I have to change my diet, nothing.

From the followups, despite telling him that, yes now I'm not feeling constant pain, that I'm still not feeling anywhere near "good" or "fine", he's resorted to the same "Well, just live your life and don't worry about things, the medication is working and any issues are all just stress and in your head".

Meanwhile, it's been six years since I've worked. I've been on Last Resort Financial Assistance for the whole period of time, but I'm really struggling to make ends meet. With the LRFA and a "Solidarity Tax Credit", I get a grand total of about $650 a month to live off of.

Generally that means one or two meals a day max, and by the last week of the month I have to over-draft my account or see if my parents can help me out just to be able to eat a little. And by the looks of things, because I haven't worked in so long, I don't think I'd qualify for the Disability Pension, or really have any idea where I would begin to look/ask for any aditional help I could get.

I'm terrified of going to the welfare office, because I don't want to risk bringing my file to their attention and possibly getting that cut off.. But at the same time I really can't live off of this any more and have no idea what I could do, where to go, what to ask, who to talk to, etc.. Poverty in Quebec is considered making under $14,000/year, and as of last year's T4 slips I'm getting $6909/year..

I can barely afford to eat, and on the rare times that I feel good, I can't afford to go out anywhere, even just taking public transit to hang out at a friend's house is a decision between "having fun" or "eating for a day".. I've been practically locked inside for the past six years.. Hardly anyone ever comes over to hang out or do anything, I can barely ever go out even if I have transportation to/from wherever..

So I guess there's my story.. And if anyone from Montreal/Quebec would have any idea who/where I could go for any help, please let me know? I've sent an email to CCFC.ca and hopefully they might be able to steer me in the right direction for assistance, but more help couldn't hurt, right?

Thanks for taking the time to read!
 
Hi Screwhead and welcome :) I'm so sorry to hear of your troubles and predicament. That must be so tough :(

It's weird, I don't know that I had ever seen someone mentioned Wegener's Granulomatosis on this forum and now you're the second in three days. Strange how that happens. As a result of the first person, I educated myself and found this:

Wegener's can mimic Crohn's Disease. So my question is, do you:

1. Have Wegener's and the Crohn's Disease was a misdiagnosis.
2. Have Crohn's Disease and Wegener's was a misdiagnosis.
3. Have both (it's certainly possible).

Are they CERTAIN of the diagnoses? Are YOU certain of the diagnoses? Do you know how both were SPECIFICALLY diagnosed? Was it through histological examination of involved tissue? I ask this because to point you in the right direction, we first need to determine if that direction is a proper diagnosis.

*hugs*
 
Hello Screwhead,
I was very sad to read your story and feel your pain.
There is help out there if you know what to look for, and it is too bad that your medical system has not pointed you in the right direction.
Try going to the disability website which I will give you.
These form usually require an MD signature, usually th GP does this., but it could be any physician caring for you.
www.rrq.gouv.qc.ca/en/invalidite/Pages/invalidite.aspx
If this does not work for you(I had no problem it is in English) you could just google disability plans in Quebec.All the options come up.
Hope this helps---please keep in touch with us.
I live in Ontario and there is on paper a very good disability plan here but fortunately I have not needed to access it (yet)
Feel better soon
Hugs and best wishes
Trysha
 
*link*]Wegener's can mimic Crohn's Disease*link*. So my question is, do you:

1. Have Wegener's and the Crohn's Disease was a misdiagnosis.
2. Have Crohn's Disease and Wegener's was a misdiagnosis.
3. Have both (it's certainly possible).

Are they CERTAIN of the diagnoses? Are YOU certain of the diagnoses? Do you know how both were SPECIFICALLY diagnosed? Was it through histological examination of involved tissue? I ask this because to point you in the right direction, we first need to determine if that direction is a proper diagnosis.

*hugs*

That's something I wasn't aware of at all.. The Crohn's was diagnosed with biopsies taken during a colonoscopy so I would imagine they got parts of the inflamed areas..

But like I mentioned, I've had a MASSIVE needle phobia since I went through the 2 months of hell in the ICU when I was 14, and now that I'm not going to a children's hospital any more, no one seems to want to take a PHOBIA seriously and thinks that I'm "an adult now" and it's something I can just "get over" when they want me to, so I've barely gotten any blood work done since I turned 18 (back in 1998).

The last time I got blood work done I was conscious during the whole thing, on my first visit to the ER for my abdominal pains.. I spent the next six weeks unable to sleep for more than 45 minutes without literally waking up screaming like I was being murdered.. dreams of being back in the ER and having needles stuck into my lungs to drain the fluid, the IVs and vein taps for blood samples, etc.. I can't remember any of what I went through when I'm awake, but subconsciously, well, I was awake and stone sober for the duration of that two month stay, so it's burned itself into my mind and plays back in my dreams like I was back there..

The Wegener's I don't think was misdiagnosed, since as of 2006 is the first time I had any problems with my digestive system and before that when I was in the hospital I was having body-wide internal hemorrhaging and it was specifically targeting my lungs..

I guess my problem now is that I also need to find a doctor that will care enough to do what they used to do at the Montreal Children's Hospital and actually put me under for blood tests, because I can't imagine any other way of getting blood from me.. I can't even look at a drawing of a needle/syringe without starting a panic attack and getting extremely nervous and violent.. I know they're there to help me, but if you show me a needle I react like a cornered animal that's having a gun pointed at me.. instant fight-or-flight reflexes.. I've once woken up strapped to a bed after a hospital visit because, as it turns out, the doctor I saw that was replacing my usual doctor didn't pay attention to the HUGE warning about my needle phobia on the front of my file and he tried to take blood from me while I was conscious.. My memory goes blank, but I turn into a wild animal fighting for it's life around needles..


Trysha: I'm gonna take some more time to read through, but I'm not certain how being on Last Resort Financial Assistance for the past 6 years is going to affect my eligibility for it.. I was under the impression that I've had to have been working and contributing to the RRQ for at least two out of the past six years to be considered eligible for it.. Time for more reading I guess!
 
I think finding a doctor who is compassionate about your needle phobia is a great idea :) And have you thought of seeking out some sort of counseling for it? I realize funds are tight but is that something that can be gotten for free in Quebec? Having chronic diseases and not having them properly monitored due to your phobia could have detrimental affects as you no doubt know :(
 
Hi! You have a pretty intense medical history and im sorry for what youve had to endure, but u sound strong and i hope you continue to get better!!

Your story made me gasp when i saw that you have wegeners!!! I am currently awaiting a biopsy to determine whether or not i have it as well...i tested positive with extremely elevated levels of protienase 3. I was wondering, though, if you could give me some insight into the disease and tell me how u live with it and maybe what other symptoms you had that linked to Wegeners?! Im pretty anxious over here and just need some info so i can learn how to live with it as well if i have it. :(

Thank you for sharing your story, its unfortunate that you have Wegeners but its nice to be able to talk to someone who understands!!!!
 
Just wanted to stop by & welcome to you the forum! :welcome: I'm sorry your Crohn's & Wegner's has been giving you a lot of complications :thumbdown: With all your complications, I'm sure that wouldn't hurt to see about getting on a disability system. If anyone deserves it, it's certainly you!

I have a family friend with Wegner's & she is on Imuran & Prednisone at the moment. From my understanding, the treatment for both diseases are simmilar. What are you taking for the Wegner's? The family friend with Wegner's had significant kidney problems and bloody diarrhea. Her gastrointestinal issues are a direct result from the Wegner's. Does your GI think the Wegner's is what's causing the inflammation in your bowel now & is he aware you have it?

Sorry for all the questions, I'm just curious & that family friend doesn't know anyone else with Wegner's & is curious how they cope with all the different systems involved.

Welcome to the forum & as you can see, there are tons of understanding people!
 
Hi! You have a pretty intense medical history and im sorry for what youve had to endure, but u sound strong and i hope you continue to get better!!

Your story made me gasp when i saw that you have wegeners!!! I am currently awaiting a biopsy to determine whether or not i have it as well...i tested positive with extremely elevated levels of protienase 3. I was wondering, though, if you could give me some insight into the disease and tell me how u live with it and maybe what other symptoms you had that linked to Wegeners?! Im pretty anxious over here and just need some info so i can learn how to live with it as well if i have it. :(

Thank you for sharing your story, its unfortunate that you have Wegeners but its nice to be able to talk to someone who understands!!!!

I honestly don't even know where I could begin.. I had a really "worst case scenario" when I had the Wegners act up originally, but this was back in 1994 or 1995 and what I went through was rather traumatic and I've blocked most of it out.. I spent a good 5-6 months where they thought I had pneumonia and nothing was being done, and by the time I went into the ICU I was so badly far along that the doctors told my parents that they should start planning for my funeral because I was probably not going to make it past the weekend..

In my case I was on six different kinds of pills, prednisone and cyclophosphamide are the two that I remember the names of.. 36 for breakfast and something in the 20s for supper, but I'd also spent about two months in the ICU getting blood tests every hour, having my lungs drained of fluid 2-3 times a day, x-rays every 4 hours, etc..

As long as you don't wait and it gets caught/diagnosed early you should have nothing to worry about! It's treatable and you should end up being alright! It's all a matter of catching it before it gets worse! In my case, they only caught it when I'd had my lungs almost completely filled with fluid and I'd had body-wide internal hemorrhaging..

Other than taking the tons of pills, the one thing they recommended, though I imagine it was more because of a risk of anemia from all the blood loss, was iron supplements, and my doctors actually recommended I eat horse meat a few times a week. Horse meat has lots of iron in it and *NONE* of the "bad" cholesterol or negative things that come from regular red meat, so if you're not squeamish about that I'd honestly recomend it as one thing that could help you along.

Really for me the most specific stuff I remember from my experience was stuff specifically to help rehabilitate me from having spent two months lying down and not talking; learning to walk and to talk again..

Other than that I just took me medication and ate horse meat a few times a week, went to my weekly checkups, and everything involving the Wegener's just kinda sorted itself out. The only major thing was that they had to majorly knock back my immune system, so I wasn't allowed to go to school for a year and wasn't allowed to go out in public or have people over, which was a bit rough, but I had a nearly nonexistant immune system at the time and they were more worried about me getting sick from someone else than they were about the wegener's acting up.

I think that the best thing to do is get onto the medication they give you and follow your daily regimen for it religiously and you should be fine.. other than the whole having to watch out not to get sick because my immune system was suppressed, there's really nothing "life changing" that I had to do; no change in diet, etc, and eventually I was able to go back to school and leave the house, but only after they'd started lowering my doses and getting my immune system back up to normal. From what I understand it goes into remission pretty easily and once it's in remission you just stick to the medication and be aware of the symptoms that can mean it's come back, but I don't think you should really have any major life-altering changes to go through.


I have a family friend with Wegner's & she is on Imuran & Prednisone at the moment. From my understanding, the treatment for both diseases are simmilar. What are you taking for the Wegner's? The family friend with Wegner's had significant kidney problems and bloody diarrhea. Her gastrointestinal issues are a direct result from the Wegner's. Does your GI think the Wegner's is what's causing the inflammation in your bowel now & is he aware you have it?

Sorry for all the questions, I'm just curious & that family friend doesn't know anyone else with Wegner's & is curious how they cope with all the different systems involved.

I haven't been on any medication for the Wegener's since 2000 when it was deemed to be totally in remission and that I could be taken off the prednisone.. The problem with everything I think goes straight back to my needle phobia and the doctors thinking it's "childish" and not working with me to find a way around it to get blood tests.. they were the first I saw and it's them that sent me to a GI, and the GI I guess has my file, but maybe doesn't know the details/understand what Wegener's is..

I guess my first step now really is to wait until tuesday (stupid long weekend) and start calling up the doctors I saw for the Wegener's and try to get an appointment ASAP to speak to them about my new concerns that I may in fact not have Crohn's but may have spent the past six years in a relapse of Wegener's..
 
Wegner's granulomatosis is a vasculitis (inflammation of the small arteries) so the biopsy could show this. I don't know how obvious this would be on a biopsy and it is possible it could be missed depending on the biopsy size. I would ask your doctor if the pathologist specifically looked for evidence of Wegner's in the biopsy (and/or get a copy of the pathology report to see for yourself). If s/he didn't, I would try to get the slides reviewed to see if there is evidence of WG.
 
Well got through to the Montreal General Lupus Clinic, got an appointment for the 1st of August, so now to play the waiting game..
 
Yeah, I've got an appointment, but it's a bit of a double edge sword.. now I've got 1 month of anxiety attacks every time I have gas, feel a bubbling in my gut, get a headache, feel any kind of bloating or pressure, any time I'm hungry, etc..

Then it's "what are they going to do? Are they going to take my phobia seriously? Am I going to have to go through blood tests conscious and live through another six weeks or more of being back in the ICU with needles getting stuck into my lungs every time I close my eyes" without even going into the possible "It's not crohn's but wegener's relapsing" scenarios..

It's going to be a veeeeeeeeeeeeeeery long month for me..
 
Psychiatrists/psychologists/etc is one of the few things, along with dental, that's not covered by Medicare; anything not "in hospital" is private, and I think at best you can get an 80% refund on it, but you still have to pay up-front and then send in bills for refunds, so it's still out of my reach until I can maybe get referred to an in-hospital shrink that would be covered.
 

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