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How I gradually lost...

Hello
I'm new to this forum and registered here for several reasons such as finding answers, relief and what others have experienced. To begin my stay here I will share my story just as many of you already have and many of those I have read.

The title of this thread I believe can be completed by any chosen word by anyone in here. And for me that word is 'hope'. My first serious encounter with health care.

I will take it from the beginning as well as I remember it and it all started around 2007. That year I looked forward to my summer holiday as I was done with the military service and felt like I finally could do whatever I wanted without being tied to strict schedules and basecamps. The summer came and I was living a peaceful life with social interactions and was getting to know many new friends and one girl in particular. Suddenly one night in late august I started having extreme pain just below my ribs and had to run to the toilet the entire night. This pain was nothing I ever felt before and would best be described by someone was inside your stomach trying to carve it's way out with razorblades. I endured it all the way through the night and the following seven-eight days when it finally stopped. Young and stupid I thought it was a bad case of food poisoning. Little was I to know that this was caused by Mr.Crohn's himself.

Weeks went by, even months, without any problems or issues with the stomach until early 2008. That's when the embarrassing struck me. Constant diarrhea after each and every meal, every single day non-stop for several months. Pain itself was almost non-existing and nothing like the year before. So at work I decided I had to skip every meal and drink whilst there, except of 2-3 glasses of water, in order not to raise suspicion amongst my co-workers, because trust me, being youngest and newest at the workplace and having to constantly run to the toilet is a major embarrassment and stupid as I am, I was convinced it would stop and go away, eventually. And it did and so was my thoughts of it, gone and buried. I continued working as usual for a period of time until next event.

From April to June the following year, in 2009, I developed a huge appetite and was eating everything I could get my hands on including things I'd never eaten before and strongly disliked. Anyways, I started getting awkward questions to what has gotten into me and on which I replied that I had no idea, some people even joked and asked if I was pregnant. It may have looked funny with me eating all the time but that was nothing I payed attention to instead I was starting to wonder why I always felt hungry. Not to talk about the huge money I spent on dinners, several breakfasts, evening sandwiches, night sandwiches. I did eat literally around the clock and use the toilet once or twice a day. Here's a twist tho, after eating lettuce I noticed that it wasn't 'processed' when I went to the toilet. It was still green and shiny just the way it was when it went in. That raised a concern and I realized I should go see a doctor. But with 10-12 hours of work and choirs at home it's easy to forget that I should go to a doctor, it didn't happen and maybe it was too late as well cause my next encounter with Mr.Crohn's was already scheduled and there was no way for me to skip that meeting.

In July the constant hunger feeling I had slowly began to convert to pain. Extreme pain in my stomach, just like I swallowed razorblades and then set my internal organs on fire. The pain got worse for each day and every day I found myself being more and more unable to do the basics, eat, shit, clean and sleep. At this point I was in so bad shape that didn't leave my bed except when trying to eat something, which of course came up just as quick as I tried to force it down. After two weeks with this agonizing pain I called the doctors office where I was told to come in for a complete check as I had no idea how what could be wrong and my described problem left a big question mark in the nurses head. What comes next is where I begin to lose my hope, in health care and humanity.

I checked in at the local doctors office in a really bad shape, pale, massively underweight, extreme pain and barely awake due to very little sleep. I was put in the waiting room where the hours went by until it was my turn. The doctor asked what was wrong and I described the problem I had and how I was unable to eat and sleep because of the severe pain I had. He told me and I quote: "Well, you should eat a steady breakfast. Oatmeal and sandwiches every morning. If you do that for a week you should be feeling better."
Young and stupid as I was I settled for such an answer and struggled my way home. The next days I tried eating just as doctor told me only to throw it all up some 15-30 minutes later. Now my house was covered in puke from all attempts to eat and when this week passed I booked another appointment at the doctors office. The day came and this time I had to wait six (yes 6) hours before I got a chance to see the doctor. I told exactly what had happened the last days and that I now was unable to eat at all. He gave me some stomach-acid reducers and told me that it was the acid that caused me to throw up the food. Once again I was stupid enough not to question the doctor but silently went home again and hoped for the pills to work.

Another week went by without the pills helping the slightest and I, for the third time, booked an appointment at the doctors office. This time I requested another doctor. I was granted the visit the same day and I hurried down so I wouldn't be late. This new doctor was on time, very serious, and immediately asked what my weight was. I told him I had no idea but that I've been unable to eat properly the last weeks due to my problems. He told me to get on the scale and boy was I shocked. My usual weight pre 2007 was about 78-82 kg, which is normal for my height of 186. But when we looked at the scale it was saying 54 kg. I know I'd lost a lot of muscle and was in bad shape but this was no way near my imagination. The new doctor told me he had to review my medical reports and get up to speed and that he would call me with a new appointment. These days until the new appointment I had so much pain I was using painkillers and sadly enough liquor to try and ease it so I could get some sleep.
Anyway, back to the doctor who said he couldn't find any explanation to my condition. Just as I was to go he took out the scale wanted me to weight in again. When the doctor saw the numbers he did a complete turn-around and referred me to a specialist at a large hospital. I asked why and he told me the scale showed 48 kg. In a few days I had lost another 4-5 kg and that was reason enough to refer me to the specialist at the hospital. Finally, finally, finally, I thought. Finally I'd might get some help. Seems that a weight loss of some 30-32 kg on a 5-6 months period isn't healthy. I dare not to think what would have happened if I was told to go back home again.

At the specialist I was given the standard treatment, some IV's, some painkillers and a buttload of waiting time. Then it started, all the testing and probing. I went from high on morphine during the probing of the intestines to non-volunteered crying when they forced an ultrasonic probe down my throat. I pulled it together and said do whatever is necessary to fix me. I was desperate.

The week after all the tests and probings the specialist assigned to my case came in and told me that I most likely had a disease called Crohn's and to which there is no cure but really good medications, you will be almost free of symptoms. Oh that sucks I thought, some ugly disease, but hey I'll be symptom free. I knew nothing about it, haven't heard of it. Only people that have 'problems with the stomach' but never reflected on how or why.

So, it's now been pretty much three years since my diagnosis I still have major problems and suffering from several side-affects along with some 4-5 months apart I get the pain I know so well from earlier episodes and with it comes the weight loss and indescribable fatigue. It took me three years to realize that there is no symptom free chronic diseases no matter how much you medicate. But when someone is being led to believe that the medication works and it's normal to have these periods of problems, well what can I say. Even worse when someone gets to hear, after all those years, that he/she has been refused more efficient treatment because it's too costly. I might still be in process of accepting my new fate and all it brings but what does one have to make to be 'worth' a treatment that could ease the suffering?
I am still able to work between my periods of illness but the constant fatigue and worrying to when the next period comes has efficiently killed all other aspects of my life.

I'm fully aware that there are many people who are off worse than me and I maybe I come off as selfish but I do feel for them as well. With this thread I'm telling my story as I remember it and with no intention to step on someones toes. The one good thing from all this is that these years have made me a more humble and empathic person.
 
You do not sound selfish by any means! Pain is pain. Doesn't matter really if it's a stubbed toe or a compound fracture, does it? And chronic pain sucks!

Unfortunately your story is all too familiar. SO many people that frequent this site have gone YEARS in agony with no diagnosis. I'm am glad you finally did receive some type of answer.

I agree that many doctors and health professionals seem to believe "hey, pop this pill, give yourself this shot and you'll be fine". While that does work for a few people, many of us do experience daily pain...and it sucks (did I say that already?).

I hope you fine some useful information here and support that we all need from time to time.

Welcome!
 

Trysha

Moderator
Staff member
Hello Colton Tag
Welcome to the forum.
Your story appalls me with the suffering you have had to endure and in my opinion the bungling incompetence of the medics you have seen.
What kind of treatment are you receiving currently?
Has anyone suggested to you the various modes of treatment available such as the immunosuppressives, biologics such as Remicade and Humira etc.
It seems to be that our GI specialists now start with Remicade or Humira and the results can be quite impressive. It has been reported that crohn's patients can feel better within the first 24hours of receiving Remicade.
There can be side effects for some people and is always a consideration.
It sounds as if your doctors are living in the dark ages and as for not sedating you prior to invasive and painful procedures it would not be tolerated here.
Are you able to locate better GI specialists such as in a university faculty of medicine?
If so try and get referred there.You deserve better than what you have been receiving.
Feel better soon
Hugs and best wishes
Trysha
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi ColtonTag and welcome to the forum! :D

I am also curious as to what sort of treatment/medications you're currently trying or have tried in the past.

Unfortunately there seems to be a fair amount of people on the forum who have yet to get into remission and have been flaring for years. This simply boggles my mind but everyone is different. For me I've had 3 major flares and the last one didn't respond to medication because I had far too much scar tissue so they decided a resection would be best. 13 years later after that resection I'm still in remission but I also take maintenance medication (6MP) to help keep me in remission.

With you I'm wondering if you have a large amount of scar tissue built up over the years and that may be one of your main problems. No medication or diet can reverse the damage that's already been done (there are procedures that can be done to stretch, cut and reattach or remove). So what I'm wondering is if you know that you're dealing with inflammation or scar tissue or both? If its all scar tissue then maybe you and your GI could talk about removing it or a strictureplasty (for me I don't really suggest the stretching because its not permanent but it could be an option for some people).
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum, I sorry to hear that you have had to go through such an awful time of it :(

I take it you are now under the care lf a GI? If so how often do you see them? What medications have you been on previously and what are you on now? What side effects are you experiencing? Another thing that comes to mind is vitamin levels - have you ever had these checked? It is common for people with crohns to have vitamin deficiences and these can cause issues on their own without the crohns adding its two cents, for example having a low B12 level can cause fatigue. I would definetly say you need to ask your doc to get all levels checked.

AB
xx
 
Thank you all for the replies. I must excuse for these long posts, I tend to overwrite hehehe.

My medication at time being is Aza and Pentasa. This has helped reducing the pain to tolerable levels and I no longer reach the peak as I did in my first encounter. But as I'm ordered the double recommended dosage, I have now after almost a year, started getting ugly problems. If this come from medication or not I can't tell as it might all be coincidence.
For instance I can no longer be in the sun without clothes covering my limbs and head. Last summer, 2011, I got very ugly burns on my arms and head after being in the sun for less than an hour in t-shirt. It got gradually worse throughout the rest of the summer and I had to cover myself with jeans and hoodies. Sun-block (rated 50 or something) worked to an extent but generally I had a maximum of 2 hours before I got problems.
Now this summer, 2012, I started noticing my skin become very dry and on one occasion after having a beer on my veranda I went inside to see that my skin was burnt and 'flakeing' on my forehead and hands. Since then I'm using skin lotions minimum two times a day and if I've been in the sun I must use it some every 30-40 minutes or I get very dry on exposed parts.

All this has been explained and shown to my specialist and he says there's nothing to do and recommend I go to my local doctors office. I'm not blaming the medications on it but I suspect them. It's just that these problems is something I've never had in my entire life and since neither the doctor nor specialist knows what's causing it I'm stuck with lotions and hoodies. I can tolerate that as long as it won't get worse.

Another side-effect of something missing in my body or mental problem is the severe lack of sleep, and is most likely reason to my constant fatigue. That I know can be caused by millions of things but it sure takes the toll on the body. And when I finally get some sleep I wake up feeling like I have run a marathon and my body been run over by a truck.

And finally, the extreme pain I get with some months (4-5) interval I have no clue. I mean, when I ask the specialist what it might be I get some vague answer like stomach-acid and he hands me a pill for it.
It might be because of scared tissue, inflammation or something else. I remember he saying during the check of my intestines that most of my colon was inflamed. But this was in 2009 and during an active flare. So I have no idea.

Remicade and Humira has never been suggested to me and when I asked what those were the answer was that they were expensive and wouldn't help me. And yes I agree, no point in taking any that won't help. I mean since I don't know if the problem is flares or scared tissue.
 

Angrybird

Moderator
Location
Hertfordshire
What dosage of the Aza are you on? I know this can have an effect on the skins sensitivity to the sun as your GI doesn't seem to want to help perhaps it is worth asking your GP to refer you to a dermatologist so they can confirm whether this is down to the Aza or not.

Was it in 2009 that things were last checked inside? If so I would say you are perhaps due to have some up to date tests done to see how things are. Also did the doc give a reason as to why he thought the Humira/Remicade would not work?
 
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