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12-12-2012, 07:12 PM   #1
nativesith
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My painful Story

My painful Story
Where do I start? I am a 37 year old native man of Alberta. Using the toilet was a nightmare my whole life.

It all started when I was 5. I remember using the toilet and seeing blood. Soon after I remember being in the back of a car clutching my stomach. I had another episode of pain about a year later. Again when I was 19, that one hospitalized me. I had a scope when I was 24, and the doc said it was hermeroids and that it did not need surgery. I remember thinking the whole procedure seemed really rushed.

At 32 I started getting a pain in my side that started to get worse. This made me question if I could to the work I was doing at the time. Which I could not do. So I decided to go back to school. I was doing all right considering the pain. But it was getting worse...The pain was constantly there. Nausea and vomiting with hot n cold feelings at night and morning. It got to the point where I was missing too many days at school and vomiting when I was there. So I was forced to take a year off to find out what this is. The whole time strong painkillers was all that seemed to help me.

Almost right after school I had another episode. This one was the worst. It felt like I was getting skewered with a sword. It felt like I was gonna die right when I woke up. I went to the ER where they said I had a heart attack?! They said nothing about my stomach when that was all I was complaining about. I was sent home with no medication.

After that I was rolling around in pain...could not sleep when I wanted to.
I started to get angry. When I went to an ER the nurses were joking that I would die before I saw a doctor. So when went somewhere else...where I was told it was from drinking by another nurse?! She asked what was wrong. When I told her she said I drink too much. I told her I did not drink for over ten years(who would drink when they feel like this?!). She said I do not believe you. After that UI said I do not care what you believe in I am here to see a doctor, not to talk to a racist nurse.

Anyway after that I finally seen a real doctor who said I need a scope and colonoscopy. He said I most likely have Crohn's or ulcerative colitis. He gave me Tylenol 3. He was not gonna give me anything else. I asked for the medication he would give to a person with Diverticlosis. Then he gave me Ciprofloxacin and Metronidazole and booked the Scopes.

I visited the surgeon who said it was again most likely Crohns or ulcerative colitis. He also said that surgery is a very likely possibility and the surgeries most often have complications(which I do not wnat to think about now).
I now have taken all the anitbotics and feeling a little bit better. The pain was manageable for a couple days. Last night I felt like I had a fever, starting aching all over, and I could taste acid. I awoke feeling pain in my right side and feeling like I wanted to puke.

Now the pain is in my right side and my family doctor gave me:
Amoxicillin, Ranitidine, and Naproxen. I taken it and still feel a lot of pain.
Will any of these medications help me? My family doctor is convinced I could 've been working this whole time. I am soo fed up with him.He said I could/should work now and that I never said anything about this type of illness. That is all I have been talking about with doctors for like 5 years?!
Colonoscopy and scope is scheduled for December 27 @ 11:30 am.

Sorry about the length of this post.

I feel scared and hopeless.
12-12-2012, 09:38 PM   #2
SarahBear
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Hi, welcome to the forum!

I'm sorry you've had to deal with this for so long. It's really frustrating, the way doctors and nurses seem to have just ignored your problems.

I couldn't say for certain whether or not the medications they gave you will help. Even if they don't seem to, just keep hanging on. When they do the colonoscopy, they'll hopefully get an idea of what is going on. When they figure that out, they can give you medication specifically to treat the problem.

Is there a reason why they said surgery would most likely have complications? I haven't had any surgeries myself, but it seems as if they typically go alright. Is there some sort of special circumstance? I'm going to go ahead and link you to the Surgery forum, HERE. You can read about others' experiences there, if you want to.

I hope things go well for you!
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12-12-2012, 09:49 PM   #3
David
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Hi there and welcome to the community. Wow, I'm so sorry you've been suffering so long. That's terrible I'm glad you're booked for a colonoscopy as I think that's finally going to get you some answers.

One last thing, stop taking the Naproxen. It is a NSAID and a TERRIBLE idea if you have IBD (which you may). So get off it NOW.

We're here for you.
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12-13-2012, 12:43 AM   #4
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Hi nativesith,
I am sorry that you are feeling so bad...and that you have had such terrible treatment by doctors and nurses. It frustrates me so much when I hear stories like yours. I don't have too much more to add right now, except to let you know that I was thinking about you. The colonoscopy should help with diagnosis...keep us posted as to the results.

Feel better,
Lisa
12-13-2012, 01:00 AM   #5
nativesith
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When I did take the Naproxen it did feel worse. I feel a constant pain in my left side, just left of my belly button. The pain varies...like I am getting hit with waves. Using the bathroom feels like I am pooping through a straw. Feels like it is pushing past something.
When it gets bad I notice I walk with a limp. I try hard as heck to walk straight and normal but it is hard.
Mornings are the worst! I awake very early feeling the pain in my side, and most often this the worst time it hurts. I try to get back to sleep but it is torture. Getting up feels like my whole lower body is sore. Nausea begins...I get a lot of nose running and saliva build up. I can not eat anything until late afternoon or the evening. When I eat solid food I can feel it making it worse, and I burp up the taste of what I ate for days. I regret almost everything I eat.
When people see me they say I look terrible and that I have lost too much weight.
The surgery...he said even with surgery that I would most likely feel like this for life. He said that most time they end up infected and take a long time to heal. Does not sound promising.
Taking Ciprofloxacin and Metronidazole made the pain better or more bearable. Before that I was rolling around in pain all the time ,the pain was excruciatingly bad and I wanted so bad to escape from it.
I feel real bad for my family who were the only ones who listened to me for so long. I feel soo bad for my wife...she has had quite a lot to deal with since even being with me.
12-13-2012, 01:17 AM   #6
David
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I feel for you, I really do. I think the colonoscopy is going to finally be a step in the right direction for you. I'm so glad that's coming up.
12-13-2012, 01:24 AM   #7
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Hi natuvesith, welcome to the community. It might help your wife understand more or vent if she got on here too.
We are here to offer support, listen when you need to vent, help find links for information or just make ya laugh.
I'm so sorry for all you've been thru. I concur with David, STOP the naproxen. The ranitidine could help minimally depending on how your Scopes turn out you may need to request/ask for something stronger like Nexium® or Protonix® if they find ulcers. The amoxicillin is very minimally effective as it doesn't work well for gastrointestinal issues. The Cipro® and Flagyl® ( metronidizole) are catered to GI issues, thus decreasing some of your pain. If you feel that what your are on is not helping, make another trip to ER for more appropriate meds or call your md and emphasize that the other meds helped and you feel the ones you are taking are not helping you or are making you feel worse. It is important you feel functional and like your opinion in your own health care treatment matters. B/C IT DOES!!
I hope you find relief soon and that you get definitive answers so you can start appropriate treatment.
Best wishes and good luck!
Thoughts and prayers with you. Keep us posted.-hugs-
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12-13-2012, 01:27 AM   #8
nativesith
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Thanks.
I hope this will get better, I can not imagine it getting any worse. The levels of pain I have felt is what scares me, I do not know if I can go through that kind of pain again. I have never felt "functional" since the beginning of the summer.
Most days I feel like doing nothing. I feel sore and drained of energy. I am also Anemic , with high blood pressure. I take b12 and Diovan for both.
12-13-2012, 01:33 AM   #9
acheallova
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Anytime. Good luck on 27th. Let us know how it goes!
12-13-2012, 01:56 AM   #10
nativesith
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I will tell everyone what happens that day. Once I know what this is, I feel like screaming it out for all the world to hear. Seems like everyone (welfare, school, my band office) needs paperwork from a doctor to believe what I am saying. What I have been saying forever, which is," I feel like I have a bad disease".
12-14-2012, 08:15 PM   #11
acheallova
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Stay strong and vocal. Don't back down, let them know you are listening to your body and know you need checked out!!
Good luck. - hugs-
12-14-2012, 10:11 PM   #12
nativesith
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Past couple days have been rough. Feel drained and bloated with varying levels of pain.
Using the Toilet seemed really hard to do today.
I really feel ignored by medical workers of alberta. How can I believe anything they say?
I do believe in that one doctor, made a appt with him for Jan 4th.
Want to have a discussion about my functionality or lack of it for such a long time.
12-15-2012, 03:16 AM   #13
acheallova
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That's awesome you have an appointment! Hope all goes well. Keep us updated on how things progress. -hugs-
12-15-2012, 01:54 PM   #14
nativesith
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Having another bad day...even sitting on a chair is giving me problems. Anything touches my back gives more discomfort.
Holds me back from everything. Held me up from working a good paying job(painter/sandblaster). Went back to school where I received awards for English and began my post secondary education(2years left). But that started a downward spiral. Now I am a game Dev at Psx-Scene. But I struggle to keep up there as well. My spirit wants to do soo much...but the body is not able.
Counting the hours til the scopes.
I am also changing my family doctor, I have had enough of him.
Looking back at my life I feel cheated. I know now that this is what I was feeling, and no one seemed to care until now. When I was a teen I remember all of my fiends harassing me to go out with them. I missed so many days of high school so I was tossed out. They did not understand and went straight to blaming my problems on drugs and alcohol. I never felt like going out. This affected my love/social life of which there was very little. I NEVER feel like going out. I get a lot of panic attacks when in public places. It started at school while doing some presentation. I never tried to get a driver's license. I always felt I was capable of passing, I just never felt up to going out and being put on the spot. I always feel like I am going to have a panic attack or mad pain just thinking about it.
My whole life my friends and loved ones wondered why I did not try. They have gotten mad about this and even tried forcing me a few times. My leg is starting to shake.

Last edited by nativesith; 12-15-2012 at 02:26 PM.
12-16-2012, 10:39 AM   #15
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Hi Nativesith! I wasn't able to read everyone's posts, but I wanted to ask if your doctor has given you an antispasmotic like bentyl? That helps with the intestinal pain caused by cramping. http://www.rxlist.com/bentyl-drug.htm I take Donnatal and it helps lessen the cramping. I started with Bentyl and it worked, though, to help with the pain. Not all of it, but some of it. Any little bit helps.

I hope you get the answers you need so you can start feeling better soon.
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12-16-2012, 12:07 PM   #16
nativesith
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I was on Ciprofloxacin and Metronidazole for two weeks ,which was the most pain free I ave been in a long time.
IDK I am starting to believe this has a lot to do with the color of my skin. Before it all started I was well over 300lbs and built like a brick house. Back then I used to shave my head. Since then I lost a lot of weight (I am roughly 200lbs) and I quit cutting my hair. Right now I am a skinny long haired native man who is subjected to more racism since I look less menacing. Walking into the hospital I feel like everyone is staring. Both my wife and I have been accused of being alcoholics which they say is the reason why we have these medical issues. It is actually worse for my wife, when I am not there it is a bad scene.
12-16-2012, 12:44 PM   #17
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Nativesith,

My heart goes out to you and all that you have been through. I am so sorry that the doctors did not help you in the beginning. so many people have been misdiagnosed, before they realize it is Crohns Disease.

It sounds like you have a good GI now that can really help you. It is important to gain some trust again, and then when you are feeling better, you can do a lot more research on this site and let your body heal. You are not alone. So many people on here have had similar experiences or like me, have a child with Crohns.

One person mentioned getting on an anitspasm medicine. That sounds like a great idea. That should give you some relief until the colonoscopy.

You have been through so much, and you have a right to be mad. But I also hope that you find all the help you need. You have been sick for a long time, and now you will get some treatment that will be of great benefit to you.

Try going on the low fiber, or liquid diet for a while. It might help too. No popcorn, seeds, spicy foods, no broccolli, or celery. You will find out what works best for you in the future. some people can eat more than others without it bothering them, but for now, until you find out what the colonoscopy says, you want to give your colon a rest.

I will be thinking of you and know that you are on the track. Someone told me once that Crohns patients are like the "walking wounded."

Julie

P.S. I think it is a great idea for your wife to be able to do some research on here for you too. there is so much valuable information and support.
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12-16-2012, 01:14 PM   #18
nativesith
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I am not really eating a lot these days. I drink a lot of tea. I drink raspberry tea with no sugar. Fruit and some broths(chicken and beef). Which is helping. No doctor ever told me it was my stomach until they mentions Crohn's(which was just a few weeks ago). Until then I had no idea, I was eating everything including sugar. I did not eat that much, but when I did it was solid food.
The surgeon asked me not to ingest any seeds two weeks prior to the scopes. I study the instructions he gave me. I had to buy Bi PegLyte which was $35.00 for the prep.
More money I do not have. Creator bless my brother for buying it for me.
12-16-2012, 03:30 PM   #19
Sybil Vane
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Are there any advocacy groups that you could go to in Alberta that could help advocate for you? I'm sorry you're the victim of discrimination. Maybe an advocacy group could help you, or at least offer some emotional support.
12-16-2012, 03:55 PM   #20
nativesith
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I ave experienced a lot of racism with in life, too much really. Alberta is really bad...they do not like come out and say "I am racist". But the actions and looks is just horrible. The alcohol thing. Do they believe every native person has problems with alcohol? Most judge you just by looking at you. I seen the way others are treated when a native walks in the attitude changes. Everyone tolerates and lets this happen. Many on my reserve are reporting they feel ignored by all doctors in our area. There was a rally about it two days ago, but it was soo cold I did not want to go.
It is soo cold one of my family members just got pneumonia, and it is bad. Making things worse.
12-16-2012, 04:20 PM   #21
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I can't believe what you've had to go through with the nurses it makes me wonder how they get their jobs when they treat people like that. Angers me so much but I'm glad it's getting sorted now took long enough and good luck keep us posted. I hope they can sort you out soon. Thinking of you.
12-16-2012, 04:33 PM   #22
Hope345
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You have my support 100 percent!!

Make sure you get a flu and pneumonia shot if you can.
I hope your family members get better soon too. Pneumonia is nothing to mess with.
12-16-2012, 04:39 PM   #23
nativesith
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When the quack suspected I had cancer he did one blood test and was satisfied. Went to school the next day and told my teacher, who is a very cool Caucasian man. He said when they suspected he had Cancer they did like ten tests on him. He was the one told me me that our system was racist. He said they obviously do not care when that is what they do for a man who is obviously in a huge amount of pain. Color of the skin should not matter when the problem in inside any person.
12-16-2012, 05:04 PM   #24
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Wow. That is so incredibly awful I don't know what to say. I am sending you all of my positive vibes and hope for better treatment and a pain-free future. ((Hugs))
12-17-2012, 12:37 AM   #25
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I am so sorry you have been treated so unfairly. I hope your drs appt and colonoscopy are able to diagnose your illness so you can start proper treatment. Please let us know what happens.
12-17-2012, 12:46 AM   #26
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I even experienced rejection in my own community?!
We have a Medical Center on reserve with a really good doctor. I visited her a few times before the receptionist found out exactly who my mother was. IDK what happened between her and my mother. The first time she held me up was the day my mother drove and escorted me in. Ever since that time she hated me...I went there five times after she found out(Every time I made a appt for 1pm)she made me wait until 4 o'clock every time. After that she said nothing to me...no come back tomorrow at this time or no explanation or anything. I was extremely upset every time. I tried complaining about her and nothing was done. She was nice up to that point.
I got mad at my mother for this...I was like. "If you just stayed in the car mom." I felt terrible about that and I apologized to my mother.
That doctor was getting close, she told me I was anemic and prescribed b12.
A good doctor I am unable to see over something that happened a long time ago that I had nothing to do with.
I am phoning her boss again tomorrow and making a complaint. She is just a receptionist(her boss told me the first time I complained), she acts like a nurse.
This is messed up! I am blocked by a vindictive woman on one hand and I must hear a earful just seeing a doctor on the other. What did I do to deserve all of this^^^? I have always tried to live a life with morals. I never hurt anyone or broke the law.
Do I look intoxicated just because I walk funny and look daze and confused?
It all makes me feel more terrible than I already do. Trying to make sense of this all, no matter how I look at it I can't.

Last edited by nativesith; 12-17-2012 at 01:36 AM.
12-17-2012, 03:47 AM   #27
Hope345
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Try to keep focused on the people you know can and will help you. Let the other ones go for now. It is more important that you get the help you need. WE can waste a lot of energy on something or people we cant change. You just found out you have Crohns and need to focus on getting your medical needs met and start to heal.

This site is going to give you so much support. It has been such a life saver for me and many others. It is like having many brothers, sisters, nurses and doctors that all have Crohns or have children with Crohns or another form of IBD. I have made many friends that I know I will have for life. Everyone is here to help. they can guide you to places for financial help, good diet info., how to deal with symptoms or just listen.

You did not do anything to deserve all of this. It is just part of the world we live in. It seems like everything can come crashing down. I strongly believe in prayer and do not blame anyone, but have trusted the Lord to guide us through it.

We cant worry about what anyone thinks. And I have found out we can not change what others think. We have to get to the point that we just trust in what we do know.

You also need to know that you did nothing to cause Crohns. It was nothing you ate, drank or did. It just happens. some say it is genetic, some say foods worsen it, some say it is our environment.. but we did not cause it to happen. They are still working on a cure, but they do not have one yet. so far, they treat the symptoms the best they can.
12-17-2012, 01:48 PM   #28
nativesith
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I thank you all for the support in my dark time.
I just wish all I experienced was a lie or nightmare I could wake up from. But it is all too real.
Feel kinda the same today, but a lil better. Many family members are going to visit my family member with pneumonia so I have a chance to visit the ER again.
Trying to remember all the advice I was given ere...perhaps I should write it all down.
I am preparing to call the boss of the receptionist. On the 12th I phoned(used my mom's phone and forgot about call display) there at 11:00am and asked if I could see a doctor. She said in a upset manner NO! With no "we have a opening this time or on this day", nothing! I was shocked and did not know what to say. After that I was pretty much forced to see my family doctor that day(who gave me Naproxen?!).
However,I have a real good friend that works with her(feel soo sorry for him) and comes to visit me often. I am going to ask him to find out if the doctor was there on the 12th. If she was that would prove that she does not want me there. Why would she lie and at least try to make a future appt, when everyone on the reserve knows she is there on Wednesdays. That is the worst one of em all and I feel something MUST be done about her. Off reserve ,I may have to hear a earful, but at least I will eventually get to see the doctor. On reserve, I do not know what the heck is going on.

Last edited by nativesith; 12-17-2012 at 02:58 PM.
12-17-2012, 10:47 PM   #29
nativesith
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Just got back fro the hospital. Visited the family member and went to the ER. I told the doctor about the Naproxen, Diovan and my two scopes booked for the 27th. Told him I was still getting a lot of pain. He gave me a IV with Buscopan or Bisacidyl(Memory is a lil fuzzy). Felt better after a while. Sent me home with Buscopan, Bisacidyl,and Lactulose. He said if the pain gets bad to come back. He said the Xray revealed I am extremely constipated, which is why he gave me laxatives(even a rectal suppository, scary). It was weird barely anyone was at the hospital and they were bending over backwards for me. Feeling better and it is really because of you all, thank you!
12-17-2012, 10:55 PM   #30
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I'm pleased you're doing a bit better I hope it continues to get better for you!
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