My painful Story

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Thanks to you all...
Pain is at the top of this list. Literally laid me up yesterday. I did manage to force feed my self. Moving round is hard on me now. Walk slow and with a limp.
PAIN is soo bad...hardly slept. I kept waking at slight sounds and movements.
I feel like there is a massive wound on my left side(Jus left of my ab muscles ...which I can almost see now?!) that radiates pain even down my left leg.
After aboot a month off the meds I can say ...Salofalk and Prenisdone help me feel way better. Better than this...I could almost have a half normal life on em.
Could anyone imagine going YEARS through this without any medication?
However...I know the Creator is guiding me through this. When my baby is happy (all the time) and she smiles...I know.:)
 
Thanks for the support...I did get through that bout of pain. Two days til the scope. Cant help but be scared. Scared of prep...scared it will be another examination for nothing.I prey this scope...be the ONE.
Now...I feel aboot the usual.Bit of pain...cold feelings in lower part of my body. Rash all over. Most days I struggle to have a movement...na today. Today I can't stop using the toilet.
One thing that can be said...I am getting better at dealing with this. Can na thank you all enough for that...and for listening to me. Means the world to me.:)
 
Hope everything goes well for you with the scoping and that a permanent solution will be found to help you.
You have been waiting far too long for proper treatment.
Feel better soon.
Prayers and best wishes
Trysha
 
Tomorrow is the big appt with the new GI....can na help but be scared. Prep....I hate soo much. Wake up, clean out my bowels early in the morning.
Hemmeroids I know they will see...can't they cut em out? A doctor tried putting a rubber band round it(Said it would come off and heal itself). Only the band came off probably a day er two after the exam.
I can feel em blocking the way when I use the toilet...
At the very least I want these taken care of.
 
Everything will be fine and soon you will get the help you have needed for so long.
Preps are the hardest thing for me too in fact for all of us.
We will be thinking of you tomorrow and keeping you in our prayers.
Feel better soon.
Hugs and best wishes
Trysha
 
:goodluck:Good luck with the procedure and with getting a diagnosis and treatment. You have been through an awful lot on your road to seeking good health. May the distress of the prep yield helpful results when the procedure is over. :goodluck:
 
I jus got the prep...colyte...ew. I remember all too well how sick it made me feel the last time. 4 L of it ....must drink it all first thing in the morning.
I am soo na lookin forward to that.
I am ready.
 
Starting to work...jus went 4 times. Wonder if that is enough?
Update:
Well it was na a scope...but that doctor did want the prep so he could physically examine me. O my butt...lol.
But he did have a lot to say after listening to me and examining me. He said we MUST do something about the hemorrhoids. He said they would bleed...but they could never make one lose over a hundred pounds. He asked about the GI ...told em there is never a follow up. The GI did see a colon polyp. He instructed me to do this next scope on the 7th and follow up with him. He wants to do his own scope where he will take care of the hemorrhoids and see what else is the source of my pain...he said we will follow up until we figure this out.
He also asked me about my financial situation. He was mad finding out I do not get AISH(Medical-financial aid) and that I am on social assistance.
Everything he said...sounded great..weird. I did na know how to react. A doctor(General surgeon Dr. Hasanni)who really cares...finally:).
 
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I may be in mad pain and nauseous...but I am soo happy. I am happy cuz I found my new doctor, Dr.Hassani. He actually listened to me! He knows all that has happened to me is unacceptable. It is unacceptable for a GI to do a follow up a year later. It is unacceptable to be laid up and not working for soo long without any financial aid. It is not right for anyone to be in this amount of pain for soo long.
I still can na believe it...guess I am used to being pushed aside.
I know with his care...that I will get better. Thanks to the Creator!
 
So happy to hear that you are finally getting some medical support. Hopefully this will get you closer to a diagnosis so that you can stay on some treatment that helps. Good for you for persevering with the prep. Sounds like it helped him examine you. Please keep posting updates so we know how you are doing.
 
I phoned the GI...he changed the scope to a regular visit. I am never going back to him. He did a scope last year, almost exactly one year ago. This is his follow up?!
That is what Dr. Hassani said, that I have been pushed aside for too long.
One examination by Hassani and he knew that I am seriously sick.Other doctors gave up, swore, and did na believe. How could they na believe me after seeing my skin.
One look at my skin Hassani knew I lost too much weight. I did na try to lost it.
I am going with Hassani exclusively and I am canceling my appt with that so called GI.
It feels weird to have a doctor like this...one who does what one is supposed to. I have never had that. Even better than Werner :).
 
Very pleased to hear that you have a caring doctor to look after you at last.
Hopefully you will soon be more comfortable physically.
Prayers and hugs
Trysha
 
Do let Dr. Hassani's office know about the cancelled scope because he will be expecting that you will be having it and looking for the results. Then he can book one for you so you can get it done soon.
 
Hassani instructed me to go ...if it was a scope. But he said if na to stop seeing the GI all together. I did call his office and I am expecting a call shortly. Might be a month er more wait for another scope...but I 'd rather it be Hassani than the GI. I am also telling Hassani to do the scope for the hemorrhoids...but do na be surprised if he does na see anything. I am sure a pill cam is needed to see what is giving me pain.
I remember the scope last may. The GI seemed mad...said there was nothing he could see but a colon polyp. I began crying asking what could be done next(Pill Cam?!). He said nothing ...like he was done with me. He also seen my hemorrhoids and did nothing with them...still suffering from them this very day. That is the kind of care that GI provides.
I did take a Salofalk yesterday...I could na take the nauseousness and pain anymore.
Should I take my Prenisdone? I soo want to. I felt very bad like the past week.
My best friend(online) made me a new avatar...I love it so.:)
 
Hi nativesith, I know it is so hard to wait for answers right now, but it seems you are so close to some answers and some help right now. I would contact Dr. Hassani's office to see what he wants you to do while you are waiting. He may tell you to take the meds now since it will be a bit longer for a scope than you thought, or he may think that he can get you a scope soon and therefore wants you to wait. So sorry to hear that you are feeling so awful now though.

Neato avatar.
 
I am soo frustrated while I have been in agony for over a week. I have tried contacting the office but I get a answering machine that cuts out every time. Meanwhile I am in soo much pain and nauseousness...it is driving me crazy.
Started the Prenisdone...cant take this anymore.
 
Feel soo bad...blood, nauseousness,diahria, losing weight, no energy, no drive, hips hurt, stomach hurts all over(I was slammed to the ground). I think this is the closest to death I have been....idk.
For legal reasons ....I can na get into the HUGEST messed up part of my painful story.
You will all not believe what has happened to me to make this all worse(I am still in SHOCK).
Jus make sure your ere on July 15th....I feel soo bad...I prey to Creator that I make it to that day.
 
Made my appt with Hassani today. Nurses wanted me to take Dulolax suppository, which I did. I have na ate in two days...suppository made me feel like hell.
But he did agree with me...that I have been sick and undiagnosed for too long. He agreed to do the PILL CAM. Said he would rush it.
Feel soo bad right now. Feel cold, PAIN,Diarehia,No appetite, Nauseousness,Left leg is sore, I have lost over 20 lbs since the 15th?!Idk...how much longer I can go on...But I will...I will fight this.
Appt with Warner on June 2nd.
Pill Cam next...thank the Creator.
 
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How are you doing? Did you have your appointment on June 2nd?

I haven't posted on your thread in awhile, but still keep up with you. How's your baby?
 
Yeah...sorry for na updating. But I feel BAD. Like today...my brother wanted to take me out to eat. We did ...I battled to keep that food down. Soo nausous...I can feel pain on both of my sides now jus below the ribs.
Dr. Warner ordered a Ct scan and listened to me. Told her even on prenisdone and salofalk that I am in agony. Lost over 20lbs in two weeks.
The only medicine I had was marijuana. I could na eat or keep anything without it.
So she agreed to start prescribing Medical Marijuana. Thank the Creator for that and the upcoming pill cam.
My daughter is 7 months and HUGE. She is soo healthy it is amazing to me.
She is my everything. Elisha.
 
Awww, I am sorry to hear things are still so rough for you. But, so thankful that you have your precious baby to brighten your life, and your older children also. Praying for you tonight. :hug:
 
Nauseousness has gone. I am soo thankful for that...I have a appetite finally.
I also did some bloodwork for Warner.
But I started getting a new pain along with the pain from my stomach. It is located on my back jus below the right shoulder blade. It feels like a very sharp pain (like a needle). It made me squirm like I had gotten a sliver er bug bite. I did look at the area....nothing there.
I also felt a very bad pain in the top left center. It felt really bad,which happened a night before the sharp back pain.
At least I can eat now. Next is the Neurologist on Monday followed by a appt with Warner on July 3rd.
Thanks for listening.
 
Well I'm sorry about the new pain, BUT at least your appetite is back and no more nausea. YAY!! Thanks for the update!
 
Sorry to hear you still havnt found answers. I've had Crohns 17 years and I'm in misery too. My last 4 scopes they havnt found anything but I have severe fistulizing Crohns so I know something is going on in there. Stay strong and hang in there brother
 
Woke up in pain, had a lot of floating diarrhea. Pain was worse after it all. It is upper left side of my abdomen. It goes around to the back. My stomach feels tender.When I lie down I can feel it more. Sometimes it hurts on my right side of the back. Fatigued and irritable. Rashes. It feels better when I fast for a day er two.
I did make it to see a Neurologist. It was like she poked me with a cattle prod. Made my hands and feet twitch. She then stated that I have no muscular diseases and she ordered more blood tests. She even looked at the blood test I took last week and said it was all related to my stomach(The blood test).
Warner next on July 3rd,then a CT Scan.
 
Thanks for keeping us informed. I wish you could get the CT before your visit on July 3rd, so you could go over the results then.
 
I pushed my pain aside to do a job. I went to Sucker Creek first nations to paint a tee pee. My step dad and I did a huge Buffalo skull(15ft). But we had to work on all fours er lying down. My back and hips hurt soo much after 20 hrs of that. But my family and I needed the money.
We went fishing in Slave lake where I caught two pike and a huge Walleye. But even there my symptoms arose. While on the dock(which was going with the waves) made both of my feet cramp up. Went to see a doctor in High Prairie(staff and the doctor were soo nice...na like here) who took a blood test which has never been taken before(Blood amylase and lipase as well as a few others). He also ordered stool tests and gave me asacol which is helping.
Now I am looking into making painting and selling my own tee pees. Really can na wait to see Warner now with all the tests I took.:cheers:
 
Did na eat all day til jus a lil bit ago(Meat and potatoes)...I became severely nauseous. I could na hold it down makes me feel like I am a anorexic... Did na even eat that much:(. Asacol helps the pain...but the nauseousness omg.
 
Yesterday was bad ...makes me feel scared to eat today.
But I jus done a stool test ordered by Dr. El Mestiri of High Prairie.
Now Warner can look at two different blood tests,Neurologist tests, and a stool sample.
Jus tried eating a lil bit of potatoes and I became nauseous. Really do na want to eat today.:(
Next week the 3rd ....see ya all then my friends and well wishers.
 
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I have been getting loads of nausea===just recovering from major surgery
Have to keep to clear fluids for now.
Sorry you are feeling like this nativesith and hope you will soon feel better.
It is time your doctors found solutions for you.
Hugs and best wishes
Trysha
 
Hoping your feeling better too Trysha.
Myself...if it na the nauseousness it is the pain. Getting pain in the upper left stomach going round the back(with hip pain today).
Top of it all....my starter on my ol ford truck jus went. Good thing my sister bought a new one and my uncle was here(Always feel better with family around) to help me put it on. But I am Soo sore now,really can na wait til the 3rd now.
 
Nativesith...so sorry you continue to suffer in this way
It is not acceptable that your diagnosis and treatment is taking so long.
Have you asked why it is like this and what is their longtime solution for you.
You have a hard life as it is and could use a lot more help than you are receiving.
Hope things will soon change for you and you will be into diagnosis treatment and recovery soon.
Hugs and best wishes
Trysha
 
Dr.Warner and I seem to be desperately searching for a answer. She really is the only doctor that ever listened and cared. She tried soo hard trying to make me feel better.
She once gave herself a time limit(trying to get me able to work)a period of eight months, which failed.
Idk...many days I am soo fatigued that I have no will to fight. Pain and nauseousness disorient me. I agree with you dont get me wrong...I jus do na want to dwell on those thoughts now. Thoughts of long term,treatment, and Dx. Now I gotta get past this day for the upcomin battle tomorrow.
I need to stay strong...we all do.
I did eat today...yeah felt good.
 
Nativesith, I am keeping you in my prayers and asking God to help you. I hate to see anybody going through this, and you have suffered for such a long time. :hug:
 
Late last night I felt pretty good, the best I felt in a while. I had a bit to eat and went to bed a few hours after. That feeling did na last long, it never does.:( I awoke very early in the morning(5am mountain time) feeling real bad. I did have a large BM,seen a bit of blood. Felt like I was kicked in my left side. Runny nose started so I am having peppermint tea. Hurt to lie down and move. I took a extremely hot shower which kinda helped. This is pretty much how I awake everyday now...wish I could sleep in and rest longer. 2 days til I see Warner.
Omg the pain I felt today. On a scale of one to ten...it was a eight. After I had a BM the pain kept building and building. Upper left stomach going round the back. Pain spread to my right hip. Feel so bad...seeing Warner tomorrow at 2pm.
 
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I made the appt today. Of all the tests done on my blood(which were a lot), one showed that there is something up with my gallbladder?! I have a emergency ultrasound booked for 8 am tomorrow. I am also still low in b12, vitamin d and iron.:( anemic?
How could it be the gallbladder when it hurts on my left side(bladder is on right). It may be my Pancreas or Gallbladder. But finally something showed up. Doc wants me to do the test and she said she will phone me on monday(Since she also has to send for the test results from High Prairie).
This hurts soo bad.
I did buy some digestive enzymes today...trying em now.
We are also waiting on approval of the Medical Marijuana.
 
Haven't they checked your gallbladder? Of course, I know that GB problems don't always show up on tests. Glad to hear that they're getting you in right away for an ultrasound. Not that we want anything to be wrong, but it would be a relief for you to have some answers.

Continuing to pray for you.
 
I am sure it was a bloodtest 2 years ago that checked GB and Pancreas and the doctor at the time was satisfied with the results. Warner seen something today that pointed to the GB.
But after taking a few digestive enzymes the pain is ...subsiding. I can say it is easier to eat. I asked the doctor in High Prairie for them but he gave me asacol. Today I was waiting for my prescription of painkillers and I was looking round the drugstore. Low and behold there they were...digestive enzymes.
Time to try rest...gotta wake up early for the ultrasound. I will make sure they look at ALL of my abdomen.
Thank you all for your prayers and support...would na ave made it this far without you all.:)
Update:
Omg....I am soo upset. We had a accident on the way to the ultrasound(which I obviously did na make). My sister rear ended another truck. My ol ford is written off. The driver side in front is pushed in almost to the windshield. No one was hurt thank god.
But my truck...I worked soo hard on that. All of the money I made in the past 8-9 months went into it. I have nothing now...no way of making any appointments. Why me? Can't anything ever go my way. I feel like giving up. I am screwed :( WHY!!!!?????
Had to take a cab back from Edmonton which cost me 135 dollars, which was for my bills. Going in the hole because of this even more than I was before.
 
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Yesterday was bad, jus glad no one was hurt.
But...I talked to this young man yesterday, who is a good friend of my nephew. He said he could tell that I am very sick and asked me what was wrong. I told em about the pain in the upper left abdomen that goes round my back that NEVER goes away. The soreness of my hips, and feeling of pins and needles. The flu like conditions in the morning. The weight loss and symptoms of my stomach(Nausea and vomiting). The feeling of malaise and hopelessness. I informed him that I had countless tests like: Cts,MRI's,ultrasounds,colonoscopes, endoscopes,blood tests...all to find nothing really.
He asked if I ever get rashes. I told em I do...they come up once in a while. Like little bumps er blisters. Then he said he was like me?! He had been put through this wringer for years...until his doctor realized what this is. SHINGLES!
Pain on jus one side w/ rashes , flu like conditions, nausea, vomiting, weight loss etc.
He said he was started on the medication Elavil at 25 mgs a night. Then his pain stopped. He has his life back now. He stated he jus has to take that one pill a day and that is it.
My family and I got some $$$ together for a vehicle. Na much but we found a van for cheap. We are going to pick it up...on the way back I am going to see a ER doctor.
I will get Elavil today. I prey this is it...please Creator let this be my path as well.
 
Tried going to the hospital that did na work out too well. Waited there 5 hours before I left.I was in a lot of pain, seems like the waiting room chairs make my pain worse.
But something good has happened. Saturday I bought some Digestive enzymes...and they make me feel better! I can eat...no nauseousness(Well most of the time)and the pain has reduced. Today...my BM looked almost normal?!
Before the pain felt like a constant stabbing...now it feels like a bruise in my upperleft side.
I have read...that Digestive Enzymes can make Pancreatitis better(By giving it a rest)as well as Shingles. IDK what to think...they both suck. But shingles can be treated..where pancreatitis can not.
I will drop a bomb(na literally lol) here on the 15th!
 
LOL, good thing you clarified about that bomb. Can't be too careful about what you say these days!

I am so glad to hear the digestive enzymes are helping -- something so simple!! That really surprised me about the shingles; I never knew it could cause the GI symptoms. Have you looked up pictures of shingles rash to see if that's what yours looks like? What a shock if you should turn out to have shingles.

How's the new van? I hope your children are enjoying their summer. How hot does it get up there in the summertime? It was 100 degrees F here yesterday. Now that is warm!
 
I keep getting a rash off/on. They look like rasied bumps er lil blisters(which is what I read they look like)...sometimes I remember scratching til I bled....my wife says I do it in my sleep?! I kept pointing it out to doctors...they said it was na related. Starting to think that was the key to this all.
My young friend said it was mostly stomach problems for him too...with a lil rash that came and went. Shingles attacks the nerves.Basically there is a inflamed nerve,the one that give the pain in ULQ. That comes into contact with the gall bladder,pancreas and stomach(Affecting em all?!). I think most times shingles is in fact a really bad really painful rash. I heard it can happen without a rash(15% of those affected).
Pain is being manageable. Bowel movements are becoming normal. Still awake in pain and have hip pain.
I think my van is great...was a great deal. It needed a wire harness for the back right signal and left front signal cover and that was it. I jus put those on yesterday,went to pick n pull. Now we can pack the whole family in there and it has Air Conditioning. But financial hurdles(like buying the van) have taken their toll.We can na do much now. K days is coming up. Trying to save a bit to take my children there, even though they are terrified of rides lol.
In Canada we go by Celsius na F. Yesterday was HOT like 34 idk how much that is in F lol.
Also...may have to wait to drop dat bomb....legal system is dragging my case out...go figure.
UPDATE: I was neglecting my garden for too long weeds were overrunning my raspberries,strawberries,gooseberries,blueberries.blackberries,saskatoons, and carrots. I pulled weeds for almost a hour. I noticed my legs began to tremble. But I forced myself to go farther. Today...my legs feels like I ran a marathon.The back of my legs HURT. Hard to move...took a hot bath and tried some A535...feels a bit better. I had to torture myself for my garden, but i love it so. Even have some sunflowers right in front of my house which are doing really well. Want to do more but...the workload I have now is hard on me.
 
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Freaking out. I am scared now, more than ever. I am scared since I know this is my Pancreas. Results of ingesting the digestive enzymes prove it to me. I can eat more now(With out most of the pain and nauseousness), My bowel movements are looking more normal. I know now that my pancreas is not working like it should ve been for a very long time. It was like my body was pushing it to perform...but something is holding it back. Before the enzymes the pain was excruciating(6-8/10). It is better now...but I can still feel it(5-6/10). Upper left quadrant going round the back.
Appt w/ Warner @ the end of this month. Really canna wait for this one.
Thanks again for listening.
UPDATE:
Thought I was doing better...but yesterday. That was soo bad. Hot/cold feelings,Pain(8/10)in stomach,pain in left hip,nauseousness,no appetite,Blood in toilet(Hemorrhoids or stomach?). I was bed ridden all day. I did not want to move at all. Left hip was hurting bad...like my leg would fall off. Stomach was really upset...kept hearing and feeling it. Like thunder allover my mid section.
I think I may have gotten too confident and ate too much the day before.
 
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This was the worst week EVER. Have na ate in three days. Ran out of medication. Symptoms of pain got worse up to ten. From my stomach down hurt. Yesterday was the baddest. I woke up feeling tortured and in agony.
Could na eat or drink. Pain began throbbing almost in the center of the stomach. I began throwing up bile. I was sweating and feeling dizzy. Had no choice to call the ambulance.
In the ambulance my heart was fluctuating, throwing up more bile. I was crying hard.
The hospital (Threw up more bile)gave me morphine and buscopan. Which did help. Then the doctor came in and said..."Your stomach is messed up because of all the medications you are taking and you are a alcoholic." Basically called me a pill popper and drunk. I told em that the pain started way before I even knew about any narcotic painkillers. I also did na take any painkillers for over a week.I take em only when it gets this bad(which is alot I will admit) I also never drank in over ten years?!.The nurse's mouth hit the floor. Doctor walked out and the male nurse said he had no right saying that to me. He said that was na the first time he said that to a native person and it wont be the last. I stormed out. The nurse went to talk to the doctor and came out with a prescription. He said he was sorry and informed me to make a complaint online. Which I will most definitely do. I thank the Creator for that male nurse.
I honestly thought I was gonna die yesterday. Felt like I wanted to end my life to escape the pain in my life.
Today I made my appt with Warner...who told me never to go back to that hospital. I asked her for Elavil,which she gave me....along with painkillers. Feel better now.
GI appt next week...Warner wants to see me right after.
I prey something is found or the Elavil works...cuz idk how much longer I can go on.:(
I will let ya know how the Elavil works out and the new GI appt as well.
 
Oh my goodness, how absolutely horrible -- both the shape you were in, and the way you were treated. SO thankful that the nurse was there to advocate for you.

I'm sorry for not remembering -- but have they ruled out your gallbladder??
 
They have not ruled out the gallbladder or pancreas. I did take a elavil and ...the pain is decreasing. I may have shingles without a rash(right now anyway). Thank the creator.
 
:ghug:..I just wanted to send you my support.

I'm sorry to hear that your still suffering. I hope the GI figures out what's happening.
 
OMG! The Elavil worked! Last night was the best night sleep I had in years! I can feel the pain decreasing. Without it I would toss n turn waking up like 5-6 times a night. It is a nerve in near my back. Inflamed it pushed against my stomach gallbladder and pancreas. That young man was right...bless em. I can still feel pain, but it is not as bad as before.
Now....I gotta start weening myself off of these bloody painkillers.
 
I am realizing now...this is shingles. I have a lil blisters on my hands and back right now. I get extremely itchy. Last summer was the last time I had a big rash. Been getting rashes for ages. I know now I have Postherpetic Neuralgia. Shingles reaked havoc on my nerves. I prey the pain completely goes away. Why couldn't the Neurologist see this? I have a rash,cold feeling from stomach down, fatigue,pain(Lasted over three years)effected my appetite, and effected my quality of life. This made me suicidal for too long. I am glad that I am feeling better. But I am mad...mad since no doctor could figure this out. I had to ask for Elavil...if I did na do that. I would be still rolling round in pain.
Then being called alcoholic pillpopper jus a few days ago(Was na the first time)makes it worse?!
 
Hi nativesith, Sorry to hear you are still struggling. I was talking to a medical friend of mine. He named a few different diagnosis for the rashes that have the blister-like appearance that you describe. Try looking these up: polymorphic light eruption, phytophoto dermatitis, porphyria, pemphiugs, pemphigoid,
He also suggested trying the East Edmonton Family Clinic if you need a new family doctor. I hope that you are feeling better soon.
 
Well...I will be moving to Edmonton soon. I want to be closer to my doctors and specialists.
I am feeling better today. Pain seems to be jus on my back now...but it is not as bad as before.
I am convinced that pain(Over three years)has effected my mind. Made me crazy.
Baby keeps getting a fever...we are both going in to the ER now.
UPDATE:Well baby has a infection in her throat. So she got antibiotics.
Doctor looked at me, took urine,blood and Xray(Chest+Stomach)tests.
Then said I have a infection in my stomach, he said it could be gastritis.
They were soo nice at that ER. Gave me amoxcillian ...but it is giving me watery green diarrhea. I also notice my stomach hurting a bit more today.
Could that be C Diff.
GI this week.
I can na believe it...but the upper left quadrant pain is almost gone!? Ever since taking the Elavil...it has been decreasing and decreasing! I had Shingles that went on to Postherpetic Neralgia. Past few days and taking Elavil proves it to me. This is the best I have felt for over three years!:)
Thank you Creator for guiding me and for bringing that young man into my life.
 
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I still can na believe this all...all I went through(looking back at this thread).Years upon years of unrelenting pain. I diagnosed myself?! Shingles and PHN. I am getting better now on Elavil, I even have a job now. Now I need a anti viral?Still get nauseous and vomit, that is na a daily thing anymore. I can still feel pain,my in a area near to my spine.Pretty sure that was where the nerve is that inflames and pushes against my gallbladder,pancreas and stomach. Pushed against those organs...it mimicked Crohns/UC?
I think I need to see a psychologist. I lost my mind going through this. I really did.
The levels of pain I felt were unreal. It gave me SEVERE depression. How could it not?
Next appt Aug 25th...hopefully I will finally have a real Dx.
 
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I do feel better then I did before the Elavil...but. There are a few days in between when my stomach still acts up. I still get nauseous and vomit once in a while. Still get pain I still see blood when I use the toilet. Like today feel pain in the left front(5 on a scale of 1to 10).
My appt? That one got me really mad and upset. First, I had to gather enough
for my ride(gas $)and the medication,which was really hard this time. Anyway...on the way to Edmonton the docs office phoned and informed me my appt was pushed back a couple hours. So I had to kill a couple hours. Then when it was time, they told me it was canceled all together...I was crushed. I told em I had to see a doctor that day. I seen the walk in doc. He would na even listen to me....cut off every sentence I tried to make. After all that,then they tell me Dr. Warner is no longer at that clinic?! Why could na they tell me that from the beginning? It is like they hate Warner and they wanted me to stay at their clinic.That walk in doctor barely helped me at all. Then I forgot the medication I got in the van that gave me a ride. I am sure it was stolen since they just took my sleeping pills and painkillers. Tracked Warner down but she is na taking anyone til October in the new clinic. Until that time comes, she is at the old clinic(The one I was jus at?!). Trying to straighten this out now.
Creator please help me see doctor Warner. I am soo tired of getting this kind of treatment.
 
Well..went to the Closest ER again a couple days ago where the doctor thought I was constipated(Which I am not)from the Codiene Painkillers. Would even let me speak. I wouldve said I am peeing frequently with pain around the kidney area(I can feel it now). Feet/Legs felt cold with extreme fatigue. That ER doctor thinks I am a pillpopper.
Then I found out Werner in a Walk in doctor now so that is what I did. She gave me Valtrex(Shingles),upped the Elavil to 100mgs(Had a goodnight sleep :)). She also tested my pee right there and said I do in fact have a kidney infection on top of my usual pain.And yes she also gave me medication for the infection.She also gave me Percocet for the pain and said when I run out to go see her immediately. She also said we are soo close to getting medical marijuana...hopefully next week.
Soo happy she is a Walk in doctor.My Family are now on the way to see her. We are all neglected by the medical community around the this area. My son Elvis(Always has a bad rash),wife Cheryl(Needs a scope to fix a valve in her esophagus),sister Dawn(Needs stronger medication for Schizophrenia), and my uncle(Diabetic with chronic pain in knees and legs). My uncle Jim,my ma, and I went yesterday. Werner said she would love to see me EVERYDAY if I could. I love that doctor.
I am better now, pain is manageable now.Happy that my kids are seeing her and two of em(Emily and Eli) are now in the school I used to go to ...Pigeon Lake Regional High. They will receive a real education off reserve now. There are too many people in the Local school who work there that do not even have a grade 12 diploma. I like the idea of a school on reserve...but they need qualified people working there(Not the Chief n councils uneducated family and friends).
I prey for you all everyday. I could NEVER thank you all enough for the support you have provided me...means the world to me.
 
Thanks for the update! I'm glad to hear things are better and that you and some of your family members are seeing a doctor who cares. It is heartbreaking, the kind of treatment you have gotten, and there's just no excuse for it. Also, great news that the children are in a better school! I hope they have a happy and successful school year.

How's your little baby doing?
 
Elisha is the happiest/healthiest member of my family. She makes me feel better jus by being herself. She smiles all day long and she stays by her ma's side.
I promise to post a pic by the end of today.
Sorry about not posting the pic. But I have been in agony for the past three weeks. But this pain is different. It is round my kidney areas. Like something inside is pushing against my back. I can hardly move...bending is extremely hard. Putting on clothes is hard. Going for a xray in about a hour.
I will get that pic up today.
 
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I am hurting again...from the stomach an down. Effecting my appetite...scared to eat. Seems like the more I eat ...the more pain I feel. Now I feel pain in the lower part of my stomach in front(Even seems to go down my legs, especially my right). Idk what is going on in my body. Crohns,UC,er Shingles...whatever this is. I hate it...hate the way it makes me feel an act.
Father...has died! My step-dad...one man I called father for over 20 years is dead?! I jus heard yesterday. My aunt and uncle found em on his front step. Why now?
He was on his front step for how many days. Feel so guilty fer na going to check up on him. I would go see em at least once a week to check up on him and his dogs. But I was in too much pain for the past few weeks.
My Ma is keepin it together the best she can...but she is crying alot. My whole family is in tears. Now we are preparing for the wake n funeral of my father Peter.
Creator help us.
 
Oh, I am so sorry to hear about your father, Peter! What a sad thing for your family, and you don't need anything more to make you feel worse. I will keep your family in my prayers.

Did your x-ray from 9-4 show anything?
 
sending love and support to you and your family. I pray that you too find some relief with your health my dear friend.
 
Thank you all for your prayers.
My father Peter was buried today.My Ma went to the funeral...wife went to the wake. I could na bring myself to do anything. Still having a hard time dealing with that death. We were informed he choked on something he was eating...his body was in front of his house for two days. It was a closed casket.
I started a journal. I write down how the pain is effecting me...also write down what I eat.
Notice I am seeing blood when I use the toilet. I can feel pain in my lower stomach...from my ribs down I have issues. My legs ache(more so on the left)and my feet feel really cold. However the elavil and painkillers help...I can function a bit more.
But I can na push my push myself too hard.
I have also applied for Medical disability...which my doctor said she would help. I prey that goes through. Can na help but feel useless to my family. If we get that at least we will have a bit more money.
 
Hi Nativesith, just wanted to check in and see how you're doing. I am so sorry about the way you lost your father... what a sad thing.

Hope your family is well.
 
Losing a family member is always hard..lettin go. I have a hard time lettin go.
My wife also let me know that I toss and turn all night long(Even when I am sleeping)making it almost impossible for her (And Elisha)to get any rest. I knew I turned and tossed before I actually went to sleep. Now thinkin about it...that is when I pain starts lately. Bottom left side. As soon as I lie down...BAM wall of pain. I fight the urge to take painkillers...since I must pay for them. $40 for 10 days worth.
Makes me lose my mind...reminds me how broke I am. Applying for disability takes MONTHS. I have to bring a form to Doctor Werner on the 15th.
Lost my journal...looked everywhere. Restless...know the meanin of it better than most.:(
 
Seeing blood... Stomach pain. Feels better staying in bed.
My family is having a hard time now. My uncle hung himself a few days ago. My family and I are in shock and disbelief. My Ma checked herself into a mental institution. She fell for a romance scam on the internet giving up all of her money. Some one saying he was a general she he loved my ma but needed money to come see her. I tried telling her that seemed fishy...but she believed it. All of that ...so hard not to bring me down.
Pain and loss...so hard to deal with it all.:(
 
Oh my, I am so very sorry about all your family is going through. How horrible about your uncle. Did he have a wife and children? I can't imagine what you all must be feeling. And your poor mother, it's awful how she was the victim of that scam. No wonder you continue to feel poorly, with all of this happening around you. Thank you for the update and I will continue to pray for all of you.

Did you ever find your journal? I hate losing things... happens to me all the time, but then the lost item eventually turns up.

Are you snowed in yet?
 
My uncle did have a family. But his wife had left him...he could not live without her. Living on a desolate reserve does not help the depression.
My Ma is mad at me for not believing her. I get angry when I think about all the money she wasted.
Cheryl and i cleaned the house thoroughly and we did find my journal. I can now update it.
Jus seen blood a few minutes ago.
 
nativesith said:
I am hurting again...from the stomach an down. Effecting my appetite...scared to eat. Seems like the more I eat ...the more pain I feel. Now I feel pain in the lower part of my stomach in front(Even seems to go down my legs, especially my right). Idk what is going on in my body. Crohns,UC,er Shingles...whatever this is. I hate it...hate the way it makes me feel an act.
Father...has died! My step-dad...one man I called father for over 20 years is dead?! I jus heard yesterday. My aunt and uncle found em on his front step. Why now?
He was on his front step for how many days. Feel so guilty fer na going to check up on him. I would go see em at least once a week to check up on him and his dogs. But I was in too much pain for the past few weeks.
My Ma is keepin it together the best she can...but she is crying alot. My whole family is in tears. Now we are preparing for the wake n funeral of my father Peter.
Creator help us.
Click to expand...

I am so sorry about your father. Prayers.

2
 
Losing my father was hard...hard to let go.
Even my Ma jus like she needed someone to replace him in her life.
Loss. Even lost my best dog...3 Socks. He was the best dog I had ,loved him soo much since he was a lil puppy. Never seen his death comin. It did snow lot...but most of it melted. real icy outside.
Jus used the toilet...and seen mucus.
 
Felt soo bad yesterday...did na want to get out of bed. I felt angry at my body. Seems to never let me do anything. I did na make it to my uncle's funeral. I had bad diahria.
First Christmas without my father. Even my Ma does na want to come home for Christmas.
In fact, she does na want to come home at all. Everything here reminds her of Pa. Last Christmas was great. I was on Prednisdone and feeling well. Both Ma and Pa were home. Children had a lot of gifts and Elisha was jus a newborn. This one well be jus my family with my sister's(Her n my nephew) and brother's(Him, n my sister in law, nephew and niece)...no elders this year. Jus seems na right. Idk...
I wish you all have great holidays this year. I honestly , can na wait for this year to be over. Lost too much.
 
Wish I could say I am at a hundred percent. I do know ...I can deal with this all better than I use to. Proof of that is reflected in my weight. I did manage to put a few lbs back on. Pain continues...but on elavil it is better. Before that drug...it was way worse.
I do feel stronger...:)
 
Cheryl and I jus got a call today from the local AISH (Assured Income for the Severely Handicapped) office. I WAS APPROVED!
Finally my family and I are getting the help we need...Thank you Creator...Thank you with all I got :).
 
I think I have to say something...Never told this story that much.
While trying to think back to when this all started...
One of my uncles came over recently. My uncle Fred. He said I am sick because of what I went through when I was 5 years old.
Back then I stayed with my grand parents. They were never home...they played bingo too much. One night one of my uncles came home loaded with a lot of lsd.
Somehow I ingested a huge amount...I cant remember taking it. Next day I woke up and my nightmares came to life. Then my grandparents found out what had happened. They did not take me to a hospital. My grandfather said I was in the spirit world...and he had to go in to save me. I began seeing a lil person...a lil indian who said his name Coyote. He protected me for a time from evil spirits. But he said I would have to rise up and fight.My Grandfather called all other medicine men...some as far as New Mexico. When they arrived they began ingesting Peyote singing songs with a rattle and water drum...even made me take some. Soon they were all seeing what I was seeing. Evil spirits...snakes scorpions and one huge spider. They were trying to drag me into a pool of water. The huge spider dragged me under all the elders watched. That is when Coyote said NOW. Kill it! I began punching with all I had. Soon the spider was no more...I swam back up. The elders saw me emerge and it was over.
I still can na believe it all...but it is true. My uncle says I was never the same after that. I became smarter...but at what cost?
I do not know how to tell people this story let alone my doctor. I know my grandparents may have gotten into soo much trouble for that...but they helped me. I do na dare to think what woud ve happened without em.
 
nativesith,
Thank you for sharing your story.
Perhaps there are some unresolved issues from your time in the spirit world that could be helped by journeying there again with the assistance of a shaman, after you have done some preparation for such a journey. I found this book very helpful in learning about the shamanic spirit world: http://www.amazon.ca/Singing-Soul-B...d_sim_b_4?ie=UTF8&refRID=0HTDRGGSV7Z90CDSR234

Many people believe that we can journey to and in the spirit world by putting ourselves into a trance-like state by listening to drumming, without needing to ingest any kind of substance. Perhaps this method would be less frightening for you given your past experience. I have found this process very helpful at various times in my life.
 
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Thanks...that is a story I ve never told or come to grasp it all.
Pain continues...always there. At my left side.
The other day my son offered me a cool drink of coke...I do not know what I was thinkin drinking it. I must 've swallowed too much er too fast. But it hurt my throat bad. I stopped what I was doing n grabbed my chest. I could feel that cold liquid going down.
Made me feel very sore after...
But now my family and I get financial support of Alberta. For that I am eternally grateful and shocked at the same time. My doctor is amazing and brilliant for helping me.Feeling like I survived a natural disaster that was all on my own. I as always look to my family.
My son is becoming a man...much bigger than I am. They are the world to me...the children.
 
I think about a week I was feeling very well. I was hungry, I felt lil pain. I almost forgot about this all.
Then it came back. I awoke feeling pain. I went to the restroom. I tried to have a bm, but every time I would push I would feel something coming up. I was throwing up while I was trying to have a bm.
Soon afterwards I felt very cold. I wanted to stay in bed all day. Every time I tried to get up...I would get cold and feel pain again. I feel cold now...I can na even think of stepping foot outside my house.
I am getting my med refill today..maybe that is why I felt soo bad...going without for a few days takes its toll.
 
I am on a waiting list for different GI. Wish I could say I m better. But the medication I get now makes a great difference. Managed to gain a bit of weight back.
Turning 40 this month...feeling kinda old lol. Ma says it makes her feel really old. My oldest child Emily turns 16 on the 27th?!
Hope you all feel better :), you will all be in my prayers.
 
Hope your med puts you back to feeling better. Your not old... 40 is a great age!!!
Happy early birthday... take care my friend
 
A few days ago I was in soo much pain, I wondered why. I am doing all I can...all the doctors instructions. I looked back...what was I doing. I was na eating...all I was doing was drinking hot tea.
Then I realized that had to be it! I drink tea and it hurts me. I pee too much, or when I need to pee it does na come out for a while. I even pee at night...I wake up feeling the need to go.
I know this is my left kidney...I know now it is not working like it should. kidney and bladder were the reason my stomach is sore.
I feel like I lost soo much. There are soo many foods I cant eat. Now I cant drink anything but water. The more I drink...the more it hurts.
I have practically all the symptoms of kidney disease.:(
 
Omg...Think I am on the right track.
After I stopped drinking tea the pain in my back left went down. Now I limit how much I drink. When I drank tea or pop the pain would get bad. It kept me up at night. It made me cry many times.
But now...I am understanding the way my body is. Making a appt with Warner and requesting to visit a urologist.
I understand what this is now...and I am afraid of it now more than ever. Doctors all thought it had to be the stomach. But stomach problems can be a side effect of messed up kidneys and/or bladder.
 
Omg...right side just above my hip hurts soo bad. 3rd day. Yesterday even sitting was a problem. Spent most of the day in bed tryin not to cry. It woke me up several times last night. I can feel it going down my right leg...so walking is slow. I did have a bm this morning as well as yesterday,so I know I am not constipated. This does not feel like it's my stomach.:)
 
I am doing the tests soon. Tomorrow I will take the blood test and book the ultrasound.
I know it is my kidneys. I mean..first I noticed tea would make my sides hurt. Now it is pop/soda and some juices.
Other day my family and I ran out of bottled water...all we had was pop. I tried to stop myself....but I was thirsty. After that four days of pain.
If I consume drinks like that, then I know I will have to endure great pain.
In those four days, I felt soo bad I would lie down. That is when I can really feel it. I felt a throbbing pain in my side/sides and it shoots down my legs.
I guess it is nothing but water and cranberry juice for me.
 
Hi Nativesith, I haven't been into the Crohnsforum in awhile and just realized I needed to stop in here and see how you're doing. So sorry to hear your kidneys are giving you trouble. Otherwise how are you and your family?
 
Well my family are doing great. Kids all passed their grades in school. My son Eli has grown soo much. He will be in grade 8 and is now BIGGER then his mother and I. He looks like I did when I was that age...I mean almost exactly. Emily,my oldest, will be in grade 11?! she is now 17?! Elvis is also getting taller. Elisha is walking and terrorizing everything she can lol. Myself still hurting. But I try not to let it get me down.
My brother in law was attacked ,received a broken arm and he was stabbed. The local hospital practically gave him tylenol?! I could not believe that. He came to stay with us for a while,since he feels safer around me. I maybe sick...but I would never back down to protect me and mine. All who have known me know that.
 

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