My painful Story

Crohn's Disease Forum

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Dont be embarrassed, when you dont feel well, it is not easy to see what to do or what is going on. Just know you are doing now what needs to be done for yourself and you have lots of support :)

I am sorry about your leg. It will be good to get all of the xrays and ultrasound done too.

You have come a long way in a short time!!!
 
Feels like I ran a marathon...sides hurt...body aching. Rough shape ...but I am beginning to see the line. Once I hit that line I will rejoice!
 
Went to my appt for xray n ultrasound today. Went all right I guess.
Tried handing in my medical release to the welfare workers in the band office. They had a problem with the way my new doctor filled it out. So I must wait longer for that.
Frustrating ...they do not know this kind of pain and they do na know how hard it is to actually leave my house.
Day of the scopes I was soo drowsey I do na remember much(even the appt I made). I found my appt. slip which says Jan 16th 1:30 pm. Less than a week now!
 
Nativesith,

I've read through your posts - I'm so sorry you've had to deal with such horrific racism! It makes me sick!!! I'm very happy that you found a wonderful doctor, someone that listens to you and is helping you!!! I'm thrilled for you to be finding out the results next week... finally, after all you've been through!

My symptoms were very bad pain in my lower right abdomen, loss of apetite, night sweats, fatigue. Before I was diagnosed with Crohn's, I noticed that when the pain was bad, I felt better if I quit eating that day and just drank water or had a protein drink and that's it. Once I was diagnosed with crohn's, they put me on a "low residue diet" and medication called Asacol. Between the two, the pain and all other symptoms have gone away (it's been over a month with no pain!) I'm still on this diet and will continue indefinitely until I see the doctor and dietition again. I don't know if this will help you but the "low residue diet" slows down and is easy on the digestion - which I believe helped take the pain away. Here's a link to what's allowed (left column) and what you should stay away from (right column)... maybe try it for a couple of days and see if it helps you. One thing I did on my own is I bought lactose-free milk, just incase I had become intolerant to it.

http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf

You hang in there and know that you have lots of support on this forum! We'll be thrilled for you when you know what you have and are on a program of healing!
 
Feel like this robbed me of my life. My life...what life? I have lived shut inside feeling pain in my stomach. Scared of what might happen in public. Why me?
If I did na have this within my lifetime I know I would have had some kind of normal life. This...this is not normal.
I do so much work with technology. Computers, game systems(Wii,Ps3,Psp,DS,etc.)PA systems, satellite Dishes I have done work with all on my own. I am a Moderator at Psx-Scene. I am the leader of the GTA IV mod team there.
This is my forum:).
http://psx-scene.com/forums/grand-theft-auto-iv/
This is what I do everyday, learning C++. It is my dream to write and make my own games.
But this...gets in the way.
I know this is bad, still feel the same and saw blood and clotty kinda stuff last night. Felt exhausted after. Feel scared...thinkin surgery.
 
The receptionist of the Surgeon's office (who took the biopsy)phoned today to confirm the appt tomorrow. 1:30pm tomorrow.
IDK how to feel about it. I do na know if I should prey they find nothing , er prey they found something.

In one hour I hope to ave the answer I waited for my whole life. What was makin me feel pain since I was five. Scary...I just know they are gonna cut out part of my stomach.:(
 
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Well that did na go at all the way I expected. I know this surgeon is part of all this Alberta BS now.
He said the tests proved nothing. I was shocked. I told em that I still feel pain, constipated,bloating, still seeing blood(seen it yesterday!? it was kinda mucus y). Upset me soo much...the scopes were really rough on me, I feel like I am now just getting over em. Three days ago the pain was really bad, felt like pressure kept building and building. I have a lot of gas with no smell at all. He did na wanna listen. He did na even look at the ultrasound he took last week. He asked if I took it?!(He would know if he actually looked at it). I asked em is there any other tests we could do, he said no. What about the pill cam? He said to tell all of my problems to my family doctor?!
Everyone in Canada is now hating natives FULL ON with the "Idle No More"movement.
His attitude changed since the last visit.
I am at the end of my rope with this. I feel so bad with no treatment. IDK how long I can last like this. Lost ten pounds in the past two weeks.:(
 
Oh so sorry it didn't go to plan. I wonder why his attitude has changed since the last visit... Is t there another hospital that you could go to coz you need the treatment and fast before you get even worse. I really do hope you get the help that you need/treatment you need. Your not having much luck. It shouldn't be anything to do with race everyone should be treated the same way. It's not fair that your being treated like this and I'm so sorry that its happening to you.
 
Right now My people are protestin all over Canada. There was one just in Edmonton. The Idle No More Movement involves closing roads down to stop/hurt the Canadian economy. Non natives are voicing their disapproval all over the media(TV, radio, internet etc). Racism in Canada is now at an all time high.
Why would that doctor make me do a ultrasound and not look at it. That is what made me question his motives. He did na look at it, did he even look at the test results?
 
Hmm as a doctor your job is to look at X-rays and diagnose people it does make you wonder how some people have gotten there jobs. Oh yeah now you mentioned that I've seen it on tv the protesting:( hope they stop soon and you can soon get the right treatment and be treated by someone who actually does there job properly and knows what they doing.
 
Did you get copies of your tests? Make sure you get copies of everything.

Crohns shows up in different ways.
 
He seemed like he did na like me and wanted me to leave right away I really did na ave time to think about much. I will inform my new doctor about it. He told me about the pill cam, he knew it would ave to be done. He said the crohn's is in a location that the other scopes would na see. This surgeon is satisfied when I am not? I will get the new doc to get copies of everything including my old files. Why is there only one doctor in Canada that will listen to me? He is na from Canada...go figure.
Weight loss...I felt like I was gaining weight! I really tried taking in more calories. But the more I take in the more the stomach acts up.
My fat level has gone down...but I do not want to lose anymore. My muscles are getting smaller.:(
 
Woke up with pain in my left side again, big surprise.My stomach(for like the last almost two weeks is bloated on the right side of my belly button. My mother and wife both see it. Bigger on the right.
Idle No Moreis really making a mess of all of this. Every non native in Canada is voicing their disapproval. Many are revealing a racist nature. Every one has drawn a line.
Some are speaking of Civil war!
I must find a surgeon who is na affected by this. IDK if that person even exists! Is there a surgeon in Canada who has na drawn that line?
Creator please help me, why is this all happening now? My native rights?! What rights? All this has done is made the whole situation worse. Now every non native has ill feelings toward me and my people.
 
I really hope that you can find someone that can and will treat you. You shouldn't have to suffer this nobody should. If they not listening to you in Canada. Is there anyone left in Canada to treat you if they isn't why don't you come to England to get treatment.. They would treat you and listen and certainly not judge. Let me know how you get on.
 
Pain is comin back now...trying to take my mind off it and this racism. Workin on my friends Superman Script for GTA. Want to make it better. Now we can fly like Superman, I want more though.
This is what I am learnin and workin on.
This is part of the script.
Code: 
    #include <natives.h>
    #include <common.h>
    #include <strings.h>
    #include <types.h>
    #include <consts.h>
     
    #define L1         0x4
    #define L2         0x5
    #define R1         0x6
    #define R2         0x7
    #define DPAD_UP    0x8
    #define DPAD_DOWN  0x9
    #define DPAD_LEFT  0xA
    #define DPAD_RIGHT 0xB
    #define START      0xC
    #define SELECT     0xD
    #define SQUARE     0xE
    #define TRIANGLE   0xF
    #define X          0x10
    #define CIRCLE     0x11
    #define STICK_L    0x12  
    #define STICK_R    0x13 

    Ped ped;
    Vehicle veh, car, VEH;
    float X, Y, Z, idle =15.0 f;
    bool normal = true, normal1 = true, normal2 = true, flying = false, booming = true;
    Object planeobj;
    int netid = -2, vehid;	

    void Superman(void)
    {
    	GET_PLAYER_CHAR(GET_PLAYER_ID(), &ped);
     
    	// activate superman
    	if ( (IS_BUTTON_PRESSED(0, BUTTON_R1) && IS_BUTTON_JUST_PRESSED(0, BUTTON_DPAD_DOWN)) )
    	{
    		if ( !flying )
    		{
    			REQUEST_ANIMS("parachute");
    			while ( !HAVE_ANIMS_LOADED("parachute") ) WAIT(0);
 
Tryin to work ...but the pain is coming to my right side. Everyone can see it (bloated)sticking out right of my belly button. Trapped gas? Been like this almost since the scopes.
IDK...tryin to get past this.
Noticed ever since the procedure on Dec 27 ...when I do poop(which is na everyday) it is in lil balls, very heavy(splashes my bum) and very dark. All with gas with no smell, I can na even smell the poop! Scared to put any type of solid food in there.:poo:

I found this searching my symptoms.
http://beyondwellbeing.com/ibs/qistag.shtml
 
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Think I am realizing what is really happening to me.
Do na laugh at me but...I am full of poop! Belly is stciking out since there is soo much.
Stuck to the wall of my colon. When it does come out it is hard (I strain)coming out in lil balls. Gas is building up round it!
Everyone says I lost soo much weight , but I feel fat, bloated, and disgusting.
Notice when I poop sometimes my blood pressure goes up. I get emotional with goosebumbs from head to toe(really noticeable).
This is not normal! I ave had a family doctor and surgeon tells me there is nothing wrong and I should be feeling fine. I do not feel fine!
What happened to Elvis"the King" Presley is happening to me. I do not wanna die having a heartattack er stroke while on the toilet. After his death a autopsy revealed 80-90lbs of fecal matter. Those close to em said he could na take a poop and could na sleep. He tried every laxative back then, nothing helped him. That is how I feel, like I am slowly losing my life. I remember the new doc sayin this will na kill me, I am really starting to doubt those words. This is my stomach and it is very serious and it may lead to other serious issues.
Any one tried Holy tea? It is supposed to cleanse the body. Thinking about trying it.
 
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Drink lots of liquids, 6-9 glasses of water a day.
Now that you know what is going on, you can fix this. There are many natural laxatives and many otc ones. Talk to your local pharmacist for maybe a stronger one.
Let us know how the Holy tea works...
 
It is constipation! I used a laxative and like 2 liters of water and pooped and filled like two bowls(feel like there is more in there). How much is in there? How much weight does this carry? Towards the end I noticed a smell, finally!
There is soo much I did na know about that and pooping in general. Like I did na know that one is supposed to poo after every meal, I ave never done that in my life.
That leads me to why is my stomach na working they way it should? Seems like no matter what I put in it ends up getting stuck inside for weeks. This has been happening my whole life.
I also did na know it is better to put your feet up, like you are in a squatting position. I used a foot stool.
Back to the laxatives...I remember a doctor saying it is na a good thing to rely on laxatives all the time. I feel like I need something to help me.
Natural and stronger laxatives are next.
I must send away for the holy tea soo dat might be a while.
Update:
Still see blood every time I use Laxatives. Last night, this morning before the procedure. What can I use that will not make me bleed. Why I am I bleeding? Thought my hemorrhoids were taken care of. Blood was round poo and I seen a poo that was totally red?!
 
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Woke up nauseous and hot...Trying na to lose it.
How can there be bloating, pain and nauseousness. Thought I emptied it, still on liquid diet. Honestly thought the laxatives would make me feel better, I feel worse. It was really bad when I woke u I was freaking out my blood pressure went through the roof. It felt like how the last attack of major pain started last summer.
 
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It is worse now(than yesterday er the day before), I was gonna call the ambulance when I woke up, but I am levelin out now.
In my mind I was really trying to fight off the bad feelings.
The only med that helped this was Marijuana, if I did na have I would ave been in a ambulance now er worse. Wish I knew what was wrong with me...this is jus too rough. Wakin up like that is the scariest feeling. Like wakin up dead, I did na want to be myself. I want to run away from myself.
I am starting to get soreness in my hips at night. Top part of em on the sides of the stomach. Almost like a pinching feeling.
 
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If it gets any worse just ring them you can't carry on like this I just wish they or someone would listen to you. Thinking of you
 
Mornings and evenings now seem to be bad for me. Morning the pain, bloatedness and nausea are the worst. Night time I feel sore, my knee hurts and now my hips, pinching feeling. The hips is causing a problem, just thinkin about sex hurts.
What else is gowan to go wrong? I do na wanna take the laxative I ave now poo all day and bleed toward the end.
IDK what to do really anymore...all I know is I am sticking to the liquid diet. spending what lil money I ave one liquids I could ingest. Mainly drinking bottled water and some fruit juices. After I emptied my stomach I tried a bit of solid food,chicken and a bit of mashed potatoes. That did na go very well. Once the food hit my stomach it began making noise(like constant growl). Soon after staring I forced myself to quit and became upset. Was na very much at all, couple of bites.
Than I wake up feelin like this.:(
I am gowan to lie down and try to relax.
 
NO! I just used the toilet first time today(to poo na pee). I seen the most blood I ave seen in a long time. There was a lot of blood , tissue y material , and what lil poo came out was black(I looked at it closer..movin it more blood came out of the blackness). Really scared to go to bed.:(
 
I feel better now. Yesterday I had was fruit juice from concentrate(which I will never do again) and water. This morning I felt really bloated so I tried a breakfast Shake which has milk, I immediately felt better and used the toilet without bleeding(the poo was really dark and mostly dirrahia). Now I feel less bloated and way better than I was yesterday.
ER...I feel if I do na see Doctor Dippennarr(he is originally na from Canada,go figure)they will na help me and I will be subjected to racism. I ave heard it all from them. Hospitals in central alberta are the worst for natives(I am na the only one). Every time I go out I feel nothing but negativity. I do na want any negativity in my life, it seriously hurts me more. I do na hate these misguided people, I grew up with many non natives(who all feel ill towards natives now)that I still have love for. This does na change the way I feel aboot my friends. Sometimes wish I was 300lbs again. When I was that size no one said nothing. Lost soo much wieght my own cousin did na recognize me(Jus like 5 mins ago)?! I am starting to believe the surgeon did NOTHING.
When I ave another procedure I demand one of my family members(or my doctor) be allowed in. With soo much hate out in the open now, I can na be left in a room by myself full of non natives with who have my life in their hands.
Idle No More is making my family and I fear for my life. Worst time for something that to happen. It is making me fear the institutions of their non native regime.
This is what I am talking aboot! Wetaskiwin(native for Peace hills?!) and this is allowed on FACEBOOK! Controversial humor? They have been openly fanning the flames, it was jus in the local newspaper. Wetaskiwin council is upset, then why do they na demand it be taken down?
http://www.facebook.com/pages/Controversial-Humor-Wetaskiwin-Memes/202094523258261
 
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I was told today i have Crohn's and a few other thing and i start- Aaz tom kinda of nervous and what about workin i cant miss due to the side effects help someone
 
IDk really I ave never had treatment for this.:(
I would go on a liquid diet and see what works for you , not everyone can stomach the same foods. As you can see I am discovering what I can and can na ingest.
Good luck and best wishes.:)
 
Hi Native,
I have sat here for over an hour reading the five pages of your thread. What a nightmare you have had to endure. It is totally a different picture for us here in Alaska, even for the natives. In Anchorage they have a great hospital system for the natives and they can use the regular system too. Why hasn't anyone referred you to a gastroenterologist? I don't know that any of these docs know what IBD is or how to manage it - you need a GI doc! That said, my daughter (now 13) has only recently been diagnosed with Crohns and I am learning a lot about it. She has had symptoms her entire life from losing weight as a baby to never being able to gain weight. We've managed her chronic diarrhea by accidentally finding that a gluten-free diet helps amazingly. Unfortunately she still isn't gaining. A few things I am learning about Crohns which may help if you aren't going to be able to depend on a doctor to help is that diet is very important. One treatment for Crohns that can induce remission is a total enteral nutrition such as Ensure or Boost, or other such high calorie drinks. These can help with your malnutrition. Metamucil can help with diarrhea or constipation - both of which can flare up your internal hemorrhoids and you really want to keep on top of both. Have you tried a gluten free diet? Have you tried going on a drink like Ensure or Boost exclusively? Even if you don't have Crohn's, I think these would be worth a try! Crohn's has a relationship with inflamed joints - perhaps that is part of why your knee is giving such a problem? Have you had an elevated sed rate or c-reactive protein? Have you been tested for celiac disease? those are both blood tests that perhaps your primary doc can check for. Your surgeon is only interested in something he can fix. If he doesn't find something he can cut on, he is done. It is the GI doc who will take all the history and all the finding so far and offer treatment suggestions. Please ask your primary doc for a referral to one. I'm so sorry for all your maltreatment. I pray the Creator will lead you to the right care, or heal you straight up. Try to stay away from opioids - they cause constipation. I don't know about THC, but you might check into withdrawal symptoms. I know you mentioned pain meds were the only things that helped. When these were stopped, perhaps the flare you experienced was from withdrawals or from constipation causing the hemorrhoids.

Sorry about all my rambling. I just had some thoughts I thought I'd throw out there.

PS. Even if your celiac test is negative, you can still react to gluten and at least 2 weeks of a gluten-free diet would help to see if that makes a difference
 
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I'm still really sorry you've had too go through this you need help and fast. You shouldn't be made to feel so scared about what they will say to you that you can't go to hospital. It's unreal it really is I just feel for you what you've had to endure. I wish somebody would put there feelings aside and just treat you properly. Not everyone is the same and shouldn't be tarred with the same brush. It shouldn't by all means be about racism it's about treating people properly and getting them better. Sorry I wish I could help you upsets me that you've had to put up with this all the time.
 
Throughout my life and this ordeal I ave lost hope in my people, system and country. There were times I had completely given up, even before Idle no More. My whole life it seems society was screaming at me to do something with my life, most times I felt like giving up. This really trained me to become scared all the time. I am a prisoner in a government house that I do not own.
Opiods...I feel ya Alaska. That really makes me question the system, it seems like every native has these?! Like the doctors are handing em out like crazy. I see people almost everyday who seem to ave lil er no pain(I can na see any sign of pain) taking codiene out of bottles of 100 er 200 caplets?!
I do na take em all the time. I take em when the pain becomes too much too handle(which is happening a lot more lately). Doctor Dippennaar said he understands about my use of it. He said it was completely understandable when I ave been untreated for soo long. I need to function in some ways. I need to make money fixing PCs/laptops. Without that I would ave nothing right now.
Nightmare is the only way I can describe it.
Now, I really want to try forget about all of this. I refuse to let this in to my life. Wondering if cutting my hair would help. May be like a clean cut army style?
IDK
I know need to go forward with the doctor tomorrow. I need to know what test should be done tomorrow. Please give me some ideas so I am informed tomorrow. I do na want to go in there with out having and idea where we should go from ere.
I prey for some end to all of this. Thanks to all for reading and taking time out of your day to try and help me. Means soo much to me right now.
 
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Can't believe it's gone on for so long it is a nightmare I wish I could help I really do:-( it's upsetting me knowing what your going through. As for cutting your hair is that so that you don't look like a native? It might work I hope in your situation it does coz you need treatment and fast. Good luck for tomoz let us know how you get on thinking of you
 
I will write later tonight when I have some time to think about some ideas for you. I'm at work now... I like your thinking though. You haven't given up!
 
Okay, Native.

Here are my thoughts, for what they are worth: Go to the appointment showing your doctor that you are sincerely interested in getting better. Don't mention disability this time. Just focus on your symptoms and your biggest concerns. You can write out your symptoms/history on a piece of paper, or perhaps print out what you wrote in your story on this thread, although the more concise you have it, the better. Bring a notebook to write down whatever the doctor tells you to do, and keep track of your efforts to do it afterwards and then bring it in the next time, etc. to show him that you are sincerely interested in getting better. If you have questions for him, write them down and leave room for you to write his answers later. Don't overwhelm him with too many unrelated problems each visit or he won't be able to focus on any of them very thoroughly.

The reason I say not to mention the disability is that in some clinics people get the idea that some people are more interested in "working the system" than in getting better. (I know, crazy isn't it..., like someone would actually choose to subject themselves to worse than poverty level in order to receive the money...). Show them that you have a real problem, and that you are going to do your part in finding a way to get past it.

I don't know if a short haircut will help, but definitely go as clean as possible and if you smoke, let yourself air out outside before coming into the building.

Questions to ask:
Is he familiar with inflammatory bowel disease? Would he be willing to refer you to a specialist who could rule it out thoroughly (a gastroenterologist) and who could help you heal up from your hemorrhoids so that you can see if you are bleeding from anywhere else. If he thinks that your problem is just constipation and hemorrhoids, ask him why it is that you are losing so much weight and why your stomach looked in such bad shape. If your regular doctor will give you a good referral, perhaps the GI doc will take you seriously too. Ask the doctor what you can do in the meantime to help your symptoms: 1. Prevent constipation and diarrhea. 2. Stop the rectal bleeding. 3. Give you more energy. 4. Prevent bloating 5.Whatever other symptoms that are keeping you from being able to do your activities of daily living (ie work, eat, shop, etc).

God bless you as you go see the doctor. I'm saying a prayer for you right now.

Carol:hang:
 
He referred me to a GI!
Gave me metronidaloze(which I took and imeddiately started feelin better), Lax a Day (tried it once so far no bad signs), and Taro Docusate Sodium capsules(to take at night time before bed).
He said it may simply be constipation, if it is the Lax for a month should take care of it. However, he also believes there is a underlying problem causing the bleeding,constipation and weight loss.

I asked about the pill cam and he said it was na a reliable procedure. But he said do not lose hope, the GI will know what to do and where to go from ere.
I hope this continues to go well, I feel better.
I will update you all later:).
Thanks for your time and friendship.
 
Glad it went well and hope you continue to feel better. Keep us updated please I've been on that medicine loads of times for different reasons its made me feel awful but hope it makes wonders for you. I'm illergic to penicillin so when I need antibiotics don't really have much choice always get that.
 
nativesith said:
He referred me to a GI!
Gave me metronidaloze(which I took and imeddiately started feelin better), Lax a Day (tried it once so far no bad signs), and Taro Docusate Sodium capsules(to take at night time before bed).
He said it may simply be constipation, if it is the Lax for a month should take care of it. However, he also believes there is a underlying problem causing the bleeding,constipation and weight loss.

I asked about the pill cam and he said it was na a reliable procedure. But he said do not lose hope, the GI will know what to do and where to go from ere.
I hope this continues to go well, I feel better.
I will update you all later:).
Thanks for your time and friendship.
Click to expand...

Glad to hear that you are going to see a GI. When will that be? These things never happen quickly enough, do they? :yfrown: I hope the med works. Remember that metronidazole has BAD side effects if taken with alcohol (I know you don't drink, but I've heard of people reacting to alcohol prep pads and hand sanitizer with it - just for what it's worth!) I hope you keep getting better and better from here on out.
 
Woke up in pain, took the metron and startin feelin better. I had a lil soup last night!
My cousin Denise came to visit my wife, my mother and I. She said she has been going through the same situation almost the same amount of time. She wakes up in pain, with pain moving all over her stomach. She is barley 90 lbs?!
Doctors do na want to help her either. Her mother died last fall, she said she almost gave up. Depression hit her hard nad she did na eat.
She is the same age as me!
Why did they did this to us for soo long? She has na even heard of a GI! We all cried together.
She only takes native medicine(which she believes in with all her heart),but she still feels the pain everyday.:(
 
I'm so sad and sorry for both of you and for her mother. I'm glad you have each other. Don't let the world pull you down. You can beat this!
 
I think her late mother(my aunt ) had this. (That is messed up when we do na even know what THIS is.) There was never a point in her life when she was overweight. She was never one to complain. She had lived a hard life growing up in a residential school along side my mother n late father. She dealt with her pain with alcohol and she could na be stopped.
I was beginning to believe it could na be this bad in our area. I was beginning to believe this nightmare could na be real.
But it is all too REAL.
 
Today at first looked grim ...but it turned out really great.:)
I woke up like I usually do, pain/bloatedness n all. I was feelin kinda of stressed out, since I was thinkin, "this is na workin...what now?".
Felt like this up til the evening. I was working on my mods and I began to feel very tired. Almost too tired, like I was going to black out. I would ve told someone but it is like I could na talk. Then my best friend from college (Renee)came over, and when he entered my house I felt better. He even convinced me to go outside with him to Tim's. He really twisted my arm. We talked about how he was doing and then we talked about me. I told him what was happening and the harsh effect it has on my life. I ave felt like I could barley fix the Pc/Laptops I do to make the $ I do. I told em about the battle that went on between my stomach and I my whole life. It never works right. I can eat, but what ever I put in seems to get stuck in it. Nothing moves without help. Laxatives did make movement, but it also produced blood.
It was then Renee confided in me that he has problems aving movements throughout his life. He named every laxative I tried. He has seen no blood, but there ave been times when he never pooped in like a week.
I told em we got to find something that will help us. You do not want to get to the stage I am in now , I told em.
He bought me a small hot chocolate at Tim's which I did drink. When I got home I actually pooped!? I t was a lot of diaheria, with no blood.
I feel better! I ave taken only what the doctor prescibed me. Lax a Day is working! Is it a bad thing to take Lax a Day everyday? Even metronizole, I feel that is the only med that is helping me eat and the Lax a Day is producing movement.
But I am a lil scared. I know this will happen again. I need something like Lax a Day just to help me poo once in a while. If I stop taking that the cycle of pain will begin all over. I know there is a underlying problem to all of this.
I feel scared for my uninformed cousin who has no treatment at all like what I ave now.
She is so small right now. I know she is going through what no one should ave to go through...and I know no one is helping her.
THAT ENDS NOW!
 
Keep in communication with your doc, keep up the med, but may have to back it off if all you do is watery diarrhea. Get yourself in a good place, then you will be in better position to help your cousin. Maybe your pioneering the way with the docs will help her know which way to go... Keep your head up!:medal1:
 
Woke up with pain in sides but it went away faster than ever.
It was a lot of diarrhea last night, but no blood, I really do na want to stop the Lax. I feel great and I know that is the reason. It has been too long since I felt like this and I do na want it to stop. Without the Lax my stomach will na move.
 
I'm not saying you should stop it, but if you have watery diarrhea too much, you may get to the point where you want to spread out the duration between doses. Understand. I am glad you are getting relief. When do you see the GI doc?
 
Since you have a doctor you trust, and he knows the situation, stay with the laxative for a couple of weeks and then you can see if it is going to work for you. There are safe laxatives you can take each day. (I agree with Carol, spreading it out every other day might be a good idea)

The pattern of severe constipation that seems to be in your community does need to be addressed. Maybe once they can pin point what is causing your illness, it will help everybody.

The article on severe constipation, made it clear how severe that is on the human body. The GI doctor hopefully will help you get this figured out.
 
Yeah ...takin a day off. Went form na pooin at all to pooin too much.
Like every 15-30 mins. Dirahia, but na blood. Just need to find some middle ground.
Feelin better I want to make more money by expanding ,my PC/Laptop business. I refuse to lie down and play dead.
Coding is my way out of all of this. I must learn every and any code. I must live and breath it to write constantly and produce something huge I could sell. Like I pad apps.
I will na let this beat me. My spirit is comin back to life,pain is na longer gnawin at the back of my head ,and it feels good.:)
 
Hope you find that middle ground too.
And all the best with that app.... you create it and we will all buy it :)
 
Getting fever like and achy all over, took a shower. Now heatin pad.
Feelin better, but its like I ave cold/flu symptoms. fever , aching feelin all over and blowin my nose all day, soo much it was drippin out.
I honestly did na eat at all today, just shakes.
Weighing myself before the scopes I was 228, now I am 190(last time I checked). I know that number is going top get smaller.
What is that like 30 pounds within a month , with no exercising?
 
sounds like a virus maybe.... it is that time of year.

That is a lot of weight loss. too much :(

Hope you get feeling better soon.
 
No!!! You have had enough sickness! I hope someone can bring you some chicken soup and fluffy blankets. At least its coming out your nose now and not blood out the other end, right? Hope you feel better soon!
 
That fever was bad, it made me want to cry myself to sleep. Felt so hot and cold at the same time with pain all over. Woke up feeling like my insides had been stretched out.
Today is the busiest time for my pc/laptop business since everyone gets paid today.
I ve had no time to lie down. Least there was na blood.
But it was really watery and yellow, like mustard.
Yesterday was -40 with the wind chill and my reserve house is na the greatest.
I really wish that does na happen again.:(
 
Glad you had work today, but sorry you were feeling so sick, especially when it was cold in your house :( ! I hope you feel much better tomorrow. Keep yourself well-hydrated.
 
It sounds like you should make a call to the doctors office just to let them know about your temp and color of stool....
 
Still waitin one the call from the GI taking forever while I feel sick. I feel like a baloon that is over inflated. Mornings I feel like I am going to burst. The pressure is soo bad when I wake up(usually round 6-7am)I can na go back to sleep. My life demands that I can na rest. I must keep going , even when I feel I can na.
This is native life. Poor, in pain and neglected.:(
It is the pressure that makes me feel bad. When I lie down I feel gravity pushing down making it worse. I wish I could sleep like a bat, upside down hanging from my feet, er maybe a hammock?
 
Got more work to do jus now. Unlockin a LG phone and fixing a Laptop with viruses.
Hopefully I can take my mind off this. Need a sleeping solution that is better than now.
 
I am getting a fever almost every night. Pain in joints. Pain in stomach. Dirahia.
Notice my eye was really ichy and red.
This does na feel good. It is always worse at night now breaking my sleep, feels like I am forced to get up. My stomach feels hotter than the rest of the body.
Always worse in left side.
Melatonin? Willing to try anything...but actually leaving my house a problem.
 
So you did call your doctor with symptoms?
My daughters eye got red when she had scleritis.... symptom of Crohns.
It did not itch--

Itchy eyes could be an indicator of the start of a conjunctivitis, which could be either allergy,bacterial, viral and even dry eye related.

Allergic conjunctivitis is the first thing that needs to come to mind though with itchy eyes, as it is the primary symptom for this condition.

Treating Itchy Eyes

A mild case of itchy eyes will probably go away in a few days, but if not then some over the counter (OTC) “artificial tear” eye drops from your local pharmacy might do the trick. Don’t take the drops more than four times a day however, and if the itchy eyes persist, then make an appointment with your optometrist as soon as practical.

Before you make your appointment you might like to get a friend to have a bit of a look into your eyes to see if there is any foreign matter there, pulling the lower lid down while you look up and vice versa to give your friend an open view. If there is something there then a quick splash of sterile saline might get it out.

found the post above, could you be allergic to your new medication?
Check out the symptom checker on line too. See what comes up;here is the link:
http://www.mayoclinic.com/health/symptom-checker/DS00671
 
You do have ALL of those symptoms.
Even though your colonoscopy was clear, maybe you were not flaring at the time. Not sure why the inflammation or ulcers did not show. Maybe someone with UC could add some comments.
 
I barely remember that procedure and he would not answer any questions about it. Both my mother and I remember them saying their were three parts of my stomach that were badly inflamed(I heard inflamed my mother heard infected). How could they see that and then say it was nothing(inflamation or infection?)3 weeks later? They said they tied up something round the hemmeriods and my stomach felt worse after that. Before I was feelin a lil better.
Can not wait to see this GI, and a dietician. What I can eat is limited and my appetite is going down hill.
 
Whatever I ave has flared up the past two days my stomach feels hot like my head, and I feel cold. Getting sharp pains, I need something for the pain . .. I can na take this anymore. Thinking of going to the ER.
 
I am so sorry.

There must be something to coat your stomach.
Have you tried Maalox? (or generic form)
We all had the flu with major stomach cramps and that stopped it immediately.
Possibly you have something totally different, but thought I would mention it.

There is a section on here specifically for UC. Have you checked that yet?
 
HI my daughter is 13 years old and we dont have any answers yet.
she has had joint and skin problems for years now hardly able to walk because of the pains in her hips was the start.
Over the years rashes, pustules on the hands and feet and the doctors told us they thought she has SAPHO syndrome which is very rare .
Her ANA bloods 1.642 so they auto immune but not sure. Started problems with pain ankles, wrists knees thought arthtitis but bloods okay. Started feeling like her bowels were moving but they arent when out and about doing normal things, tingly hands and feet and vision problems,
Now last year later tummy pain they did a fecal caliproctine test level 227 in and got camera up and down and biopys ALL CLEAR .
NO bowel problems
We are waiting on the results from the bowel mri but doc doesnt think crohns or colitis and the biopys and scope clear and they thought there would be spread.

WHAT DO YOU ALL THINK?
The docs also said before the did the camera up and down that because fecal caliproctine was high its only raised by crohns or colitis but now that camera was all clear and biopys are clear they are now saying could have been raised because of sore throat or cold something like that even she was well to us at the time .

First caliproctine test was March second test was Sept.
And now saying ANA Blood test might always be high
can you help can this still be crohns . we have family history but more running to the toilet rather than joint and skin.
 
Kathleens, does she have weight issues, underweight, abdominal pain, changes in bowels? My daughter had nearly normal tests of both scopes and MRE, but the video camera showed inflammation throughout. Her main symptoms are not being able to eat and delayed puberty with low weight. I would suggest you post on the parents of IBD support board, as more people will see your post and can help. I'm pretty new to all of this myself.
 
I can do soo many things I ave learned(mostly by myself, self taught). When I put my mind to a technical l problem there is nothing that can stand in my way.
I wish I could figure this out. Wish my scripts worked on me. Online in Grand Theft Auto I play as god, I can do things that amaze people when I go online and play. I apply God mode and I can fly like Superman(People jump on my back and I show em what they never seen before). I really wish that was me.
Wish I could apply God-Mode to myself. I wish I really could show people the amazing things I can do. But this ...this has gotten my way my whole life.
My lil brother and lil sister both Tower over me(I did na grow as much as them)
Now it is like half of my life is gone and now this...this handicap. I am trying soo hard to get over this.
Everyday is a battle I am afraid to lose. I can na LOSE!
What I thought was my high blood pressure is a nightly fever. I can na believe I or my wife who touches me every night did na notice til now(We were soo concerned about everything else). These flu like symptoms are every day. I realize NOW?! this is happening everyday. I thought congestion was allergies and the high blood pressure explained my fever.
THIS IS MY DAY EVERYDAY for years
It is a cycle of pain. Mourning I wake up mostly feelin the bloated pain, but it the congestion is also bad. I blow my nose with a lot of green almost yellowy stuff that is like slimey sticky. When I sneeze ,which is a everyday thing, I sneeze like ten times in a row.Bam,bam,bam! Make the pain worse. By mid day er evening the bloated pain/congestion settles and the slight to high fever begins. Temp in my head neck and stomach feels hotter than anywhere else. Joint pain worsens with the fever. All with rashes and itchy eyes. Damn. When it is bad it all gets worse. Not one but all symptoms. Fatigue gets real bad, making me extremely irritable.

Painkillers slows it all down, the fever, the pain,the congestion. I feel trapped. I know now I am flaring up bad.
I took em like three hours ago until then I was really bad.
I swear to my creator that I do na want to take these. But some days without em seem impossible. I did na start just taking pain killers and this started happening, rather it is the only option (that helps me) I am given now. I realize now this was happening my whole life, and this is the only med I found that eases it.
 
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I had a very severe flare suffered 4 months before I done anything about it. My doctor gave me immodium it didn't work a week later I was in so much pain with my stomach I could hardly move and going the toilet so many times. I got admitted they thought it was severe uc treatment wasn't working I was getting sicker and sicker. Pain spread to all of my stomach. I only started getting flu like symptoms in hospital and my temperature was up everyday they thought it was normal for me it wasn't. In the end they had to remove my large bowel it could of burst at anytime and killed me. I don't mean to scare you but it needs sorting out before that can happen. I know nobody is listening to you or nobody will treat you. Which is the worst thing can't you somehow get treatment in uk? My surgeons were amazing I didn't want it but didn't know then that it was too save my life. He said it was the worst he had ever seen had to send it off for second opinion it was that bad. Got diagnosed with indeterminate colitis. I just hope you get this sorted before it is too late. Don't mean too scare you
 
I am scared, I can feel my stomach like every second, no appetite. MY stomach sounds like thunder rumbling from one area to the next. Left side hurt more than any other part. The fevers get bad with pain all over. I know it will burst if something is na done soon. Still waiting on call GI , I am getting ready to try to call my Doctor.
A lot of people ere say to do that. No doctor in Canada ever gave me a number where I could call em. The only number I know is the number of his office. I know the nurses will na let me talk to em over the phone. Many of the treatment /respect everyone ere is given, is never given to me. They never share the information about me, like paperwork. Most visits I ave felt rushed , like they all wanted me out asap.
I am trying to prepare myself for the GI visit. I do na want to overwhelm em.
I jus gotta make it to see em, please Creator help me.
 
It started off my left side hurting really bad then when I was actually admitted it spread to all over my stomach. Make sure you get a number when you going to see GI? He shouldn't make you feel rushed.. Tell him what you have told us I'm scared for you if nothing is done only that was my fault and not there's. let us know how you get on plz. Make sure you write questions down you want to ask. In the UK they don't treat you how you get treated there. It really make me angry that you are still being treated like nobody. Good luck let me know
 
Every time I check my blood pressure it is like that. I was dianosed with High Blood pressure in 2004. I was taking my baby in the hospital at the time, one look at me and the doctor knew something was wrong. "Go get registered now! and get immediatley back in here" he said. I did, when he did check my pressure his eyes went wide. "IDK how you are standing now...your heart should ve exploded" he said. "Your blood pressure is like almost double what it is supposed to be!" He checked my forehead and said "your are burning up! How do you feel "he asked. I told em I was "sore all over , and my head felt hot all the time." That was what 9 years ago!
He gave me PAINKILLERS?! Tylenol 3 the first time I had taken that and the fever and pain all over went away.He also prescribed some high blood pressure med , which made it all worse. After a few days it made my stomach worse, made the fever worse, and nausea and fatigue hit hard. I was working hard at the time. Really still trying to find a med that will agree with me for the blood pressure.
For 9 years I had a fever which every doctor said was because of my blood pressure.
I feel soo STUPID!
On top of all this , I phoned my doctor's office and made a appt. I asked em if I could speak with the doctor. They asked me ,"what it this was concerning?"(REALLY!!OMG!! Asking to talk to a doctor! WHAT IS IT CONCERNING?!). " My health" I said. Then she said they referred me to the GI, who then referred me back to the quack surgeon. He ignored it last time, what makes em think he will na do it again? I ave no faith in the man.
They are going to kill me.
My wife...IDK what is going on. But she does na understand. She does na help me, really making me feel worse. She does not want to listen. She wakes up irritable every morning. This pain forces me to wake up early, and I dread the time when she wakes. Her negative attitude always makes me upset. She barley helps out roud the house.This is why my mother moved back. Since I could na longer do everything and my wife did na want to do anything. Everyday I see my mother(over 50 years old) doing most of the cleaning while my wife seems to sit there staring at me. All makes me upset , why would she do this to me and my mother?
If my time is short, I do na want to spend it with her.:(
I can na lie about her anymore.
 
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That bloke sounded like he new what he was doing can't you go bk to him? or was he just a doctor? I think it was my bodies way of saying there something wrong and trying to fight it off even tho it didn't work nothing did only surgery i had nearly a month of strong steroids it's bk to normal now thank goodness they done tests on my heart while I was in there. Nothing came bk. oh goodness how long has this been going on for? I really do want to help you. You need to go to a good GI who will listen to you, treat you and who you can trust. Can't believe that woman she shouldn't have asked its confidential. Let me know how you get on. When's your appt? You are right in saying he could do it again.
 
Appointment is next friday at 12:30. IDK know what I want to say to em about all of this. The first visit I had with em he said this would na kill me. Starting to believe it is all a lie.
Every doctor is lying to me and ignoring me. I ave had enough, next friday I am going to speak with a Lawyer. This is na right. I feel like I am going to die and no one round here cares but my mother and kids. I can na lose.
 
Think positive it won't and you can beat this :) good luck with it you seeing a gi and lawyer? We care :) will the lawyer speak to doctors and GIs as well it isn't right they need to be told I wanted to believe I would beat it yet it nearly took my life. I believe it's my fault but we won't ever know for sure coz of my diagnosis. Good luck
 
Nativesith, you are starting to sound bitter. That bitterness will eat your insides out. Your doctor is trying to help and he gave you some medicine that helped for a few days. Are you still taking it? Are you doing everything he asked you to do? When you go back on Friday, tell him what you did, how long it helped and when the problems started recurring. Keep a journal this week of your symptoms. Have you tried to go on a gluten free diet? That helps a lot of people with GI problems. You'd have to do it faithfully for 2-4 weeks to see whether it is going to help. Be specific when you go see your doctor. Choose the part of your problems that bother the most, such as abdominal pain, daily fevers and body aches (or whatever symptoms you find most bothersome). Recap what you discussed before and what you've tried and how it worked. Don't go into how no one is helping you or how you feel you are being neglected or your marital problems, etc. It isn't your doctor who is going to help with those problems and it will detract from the time he has set aside to see you for your medical problems.
 
I know...it was hard hearing that I would see the same surgeon. Taken everything he gave me. I am na eating really much of anything. It is constantly going on no matter what is thrown at it. Just too much to deal with everyday. I wish I could ave faith.
But I was heart broken hearing I would na even see the GI. This surgeon obviously na stomach specialist. I fear I will go through all the scopes again for nothing to show.
The scopes were really hard on me and only made this worse. I really have no choice ,must go back to this surgeon. Do na know how to feel.
Now my daughter is not eating, she never wants to go out with her friends.
Showing too many bad signs of what I been through.
My relationship with my wife is something I work hard on . Some times I think too hard.
I love her, but I need her to be more positive.
I know it is too much to hear , to much for me to hear.
 
I'm so sorry. I've lost track of which doctor, but I was referring to the one you liked who gave you the laxative. That is not the office you were calling? Sorry. No, you'll want a surgeon to know your whole story so he can help unravel it for you...

Is your daughter depressed? Withdrawal and lack of appetite can be signs of depression. Is she getting other GI symptoms as well?

If you do get scoped again, I hope the surgeon will take biopsies. I am totally with you about a surgeon isn't the same as a GI. That is frustrating news, especially when you felt blown off the first time.

Have a good night. I guess if you are writing now, you aren't sleeping well. I figure it is much later there, although it's only just midnight here. I fear I'm not being very helpful, know that I mean to be caring, and I do care that you and your entire family are suffering.
 
My days are hard. Late at night I feel better than the rest of the day. I do na wnna go to sleep. I wake up feeling like I been kicked in the sides or like I ran a hundred miles.
I end up going to sleep very late and waking up very early, it is torture.
Lawyer...I want to talk to. I really want to hear what he has to say about all of this.
If the worst should happen at least he will know my side of this nightmare.
Working hard yesterday. I sat on the floor to get at better look at the insides of a PC.
Soon as I sat I noticed a sharp pian that hurt it made me jump up. Still kinda hurting form that.

I will go through this one last procedure with this, if that does na work...
I give up on the Canadian medical system. No more test no more doctors. What is going to happen is going to happen
I accept that and I know now I can na stop this. I will go to a medicine man and prey one em can save me. Racists of Canada will na allow anyone to save me. Seems like they want to prolong this and make it worse.

Sorry for belly aching for soo long, back to work:(.
 
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Don't be silly you are allowed to rant on! We just want you to get it all sorted and get well again :) have you got any strong painkillers that you could take? Don't think that the worst will happen that you will get better. You will be treated and you get through this. We believe in you you are strong. Good luck for Friday keep us posted
 
I ave more faith in my grandfathers than in any doctor I ave met.
My father died when I was very young, I can remember that like it was yesterday. I remember going into a deep depression that made my stomach worse. I went to my family doctor and told em what had happened. You know what he told me?
First he asked how old dad was at the time of his death.I told em 40. Then he said that was most likely when I would die By 40. He said his to a child. I was lost without my father. I still am. I walked out of there stunned with no help , thinking about my death.
I can na stop thinking about that, since he said it. They did this to my father , the bastards!
 
My father was jus like me, he had accomplished more in his life. He was a brilliant man who the community respected and listened to as a leader. He was destined to become the greatest Chief we would ve EVER known. But it never happened.
I seen em go through all I am going through now. But he was soo strong he NEVER wanted to talk about or let anyone treat em any differently.
I was told he died of a heartattack. I do na believe that. The pain was jus too much for his heart to take.
When I went in for my stomach last summer they said the same thing. I had a heart attack. I did na feel anything in my heart(No numbness or confusion)it was all pain in my stomach.
 
Jezzz :(:(:(:( that is so sad and I'm sorry about your dad he should not have said that to you:(:(:(:( can't you get your grandfathers doctors to help you?
 
Last night I was fixin a PC I had to get in closer. So I sat on the floor. My butt had a sharp pain. Still feel it , makes it uncomfortable to sit any where.
So next visit I will be like "LOOK AT MY BUTT!" lol
For like the millionth time. Can na help but laugh at that. My butt on display OMG.

Grandfathers doctors are the same people so I know that will na work. They know better than any native what to expect when we go there. Western Canada was really bad before this fight for our rights. Now natives everywhere are standing up while I can na stand up for it and I feel the effects of it.
 
I can't think of anymore ideas I'm sorry :( wish I could help you. Lol at least it makes you laugh but good luck for Friday let us know how you get on thinking of you big hugs wish I could take it all away for you :-(
 
On my own I ave fought a war against my body. Blinded by pain I did na even realize what was going on(or how long ) er what was happening to me. All I could focus on was others(My family) and my pain.
I ave come to many realizations with all your help and guidance while I walked my dark path. I realize this was in fact happening all my life. I realize the pain affected my brain making me insane. I realize my life was put on hold for too long.
Lately I realize any blood pressure meds help the pressure , but they make this worse. I ave na traken any of em for the past two days and I feel better. I am torn between helping my pressure or my pain. I also realize I am na lactose intolerant, in fact it makes me feel better. Past few days I ave drank milk product , yogurt, ice cream. They helped me poo! I woke up this morning as I usually do, but this time I felt I needed to poo right away. I did and the strangest thing happened after that, I WENT BACK TO SLEEP!. I ave never done that in soo long
So I am going to keep this up.
I came to the realization I am a WARRIOR! I am the warrior "nativesith". I am a warrior like my father and grandfather before me. This will na take me!
:ybiggrin:
 
I noticed sometimes with the fever comes shaking. Almost like a seizure. Like I feel cold and my chest starts twitching.
But the fever went down for the past couple days. I still wake with pain. diarrhea. Now the pain last all day but it feels more like a bruise inside on the left side. I did use the toilet, but I can still feel my left side bloated out more than my right side.
I really am only on Metronidazole and the soduim tablets at night.
 

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