My painful Story

Crohn's Disease Forum

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Hi i'm on here for a very close friend who is shy and has Crohns. I'm doing everything i can to be there for her and help i'm hoping being on here will help. She was diagnosed with Crohns last year was taking Imuran. She was in the hospital and almost died from weight loss and loss of appetite. Her hair loss started with the Imuran. She was on it for bout 5 months then onto Humira for the last 8 months. She's stopped because she's desperate to stop losing her hair. Her lashes and eyebrows as well. She is now taking Mezavant hoping the hair loss will eventually slow down and possibly stop. Even growimg back eventually. I hope no one minds that i'm on here for her she's a sweet girl and i need to do what i can to make her smile again. Can anyone help me help her?? Has anyone else experienced these symptoms???
 
How did your appointment go native? Thinking of you drake and hope hair loss stops soon. It's awful as if we don't go through enough. But hair loss makes our confidence even lower nothing like knocking us when we are down. I had the same for about 5 months in 2011-2012. I was really really sick so not sure what caused it. I've had another op and its been fine.
 
I was too thought I was going to have to get it chopped short you could see bald spots:( it's upsetting but it does get better believe me. Mine fell out from nov 2011 to may 2012 its still not back to normal thickness but its much better than what it was. Is she able to see her doctor or a hair specialist? I was on pred and that probs didn't help me either
 
It was a pretty wild past few days...When I went to the specialist My BP was normal...went to Warner and it was normal. I have na taken any BP meds for- over a week. I HAVE NORMAL BP NOW?!
Also I started being a bit naughty...I ask myself what I would normally do...and then I do the opposite...and it has made me feel great. May be living like a outlaw has made my blood rush n feel good.
Was all good til last night , when I seen blood, think I strained too hard. Then pain started radiating to my left hip...So that pain was the riods the whole time?!
Understanding this better. Dr Al said I was too low on b12 at a point, now Dr Warner says it is Iron. Did a blood test yesterday. Feel kinda bad today...make me wanna be BAD( like the late MJ lol,Who Bad?).Sorry I have na been on too much, but my Laptop is officially dead, jus gotta say the last rites and bury her.:( She was a organ donor so I will save what I can.
Hair? Wish I could help ya there, but myself? I had suffered bald spots on my head through out my life. I NEVER had any type of treatment.
One Thing I know that works strengthening hair...
Make some tea, drink a bit and save some. Comb your hair, but when you do dip the comb in the tea. That will strengthen it. Native way? Take the hair that fell out, roll it in a ball. Find like a swamp or marsh type of Area. Bury it with a bit of tobacco on the top, say a prayer to who you pray to and wait.
 
Hi everyone. Been away for a few days i work long hours. Sorry. How have each of you been doing?? I see some people have tried Biotin. Is there a recommended daily dose for that?? My friend has been in good spirits lately...her bday is Tuesday! Hope all is well with each of you...
 
Sorry not been on ages smashed my phone(accidently) so couldn't use it :( was lost without it but it's sorted now. Great news Native glad your blood pressure ok hang in there we here for you. Just keep us posted you got any more appointments? Drake glad your friend is in better spirits has her hair stopped falling out yet??? Hope so
 
Feelin a bit better . I still get pain ,past two days were kinda bad. Dogs in the neighborhood making sleepin a problem. A female dog was hanging round my 3 boy dogs. She was barkin at everything making the others go crazy. So I went to drop er off down the road. Thought it would solve the dog problem ,but no.My sister has a female that is attracting all in the neighborhood .
I said to my sister I want to get rid of that dog. But she does na want to. Normally I would na have a problem with that . However I am the one taking care of HER dog.
I can na care for pups in the upcomin winter . Did that last one and I do na want to again. I am ill and this is how I am done . But stray dogs are really becoming a problem . If EVERYONE took proper care of their pets there would be no problems. Seems like I am the only one that cares.
Everyone round here is like my sister . All have dogs they barely take care of.
 
Thats some crazy stuff bout the dogs! And people really do need to take care of their pets in a much better manner in regards to their neighbors and noise levels. And no her hair hasn't stopped falling out but she's now taking more Biotin to see if that helps. Cheerbear that sucks bout the phone! They can be expensive nowadays. So much reliance on them in today's society. I'm jus as bad! Using it now!! My friend is taking 5 Biotin a day now instead of 1 cause of a post i seen elsewhere on here. Hope thats alright for her!!!
 
I love my pets and it pains me a great deal to see others not care for theirs.:(
I did make it to my stress test today. Went all right , I guess.
They hooked me up to the heart monitor and noticed my skin, which lead to me telling my story. Everyone there was AMAZED. They could na believe I lost soo much weight. They could not believe my BP is normal after being high for like 4 years.
Treadmill was hard on my bones like my hips, knees and ankles. But my heart performed as it should.
I am jus glad I had a good night rest and felt better today then I did the past few.
This will na beat me. I am getting better. Gotta stay positive.
It is my son Elvis's birthday today...he is 8. I made enough for a cake and a few things. He will be happy...which make me happy today.
 
It was great time .
Now? Think I found a great job. Best part? The foreman is one of my uncles who knows what I am goin through. He will na push me too hard. Hopefully startin monday . I prey it all works out,prey I can push past the pain . My family needs this.
 
Still waiting on the job...but honestly I am glad they did na call me this week.
It was bad...top of it all I had the lactose tolerance yesterday. That made me feel soo bad...
All the symptoms became worse...Pain(in stomach and joints), itchy,fatigue,nausea,no appetite...even made my vision blurry for a while.
Hospital jus called and informed me that I am severely allergic to dairy products. Now they want me to visit a dietitian.
Now...I am feelin a bit better. Better than yesterday...but no more dairy....damn.
 
You a dairy person?? I guess there's still lactose free milk. And other ways to get calcium. Sorry to hear bout you not feeling well with the joint pains, etc, its good your feeling better. A dietician can help a lot its amazing these days with all the knowledge and science of what the body needs and when and why. Can really help physically an mentally. Best of luck to ya!!
 
Sorry that you need to give up dairy.

Remember Ensure also contains dairy.

Hopefully you feel better without dairy and with improve health won't miss diary as much.

Thinking of you.
 
If it is an allergy, Lactose-free contains dairy. I'd stay away from all milk products and see if you can get better!
 
So many poisons went through me...all ordered by doctors. I have clung to my life...fightin this whole time. More tests coming...I fear that I am allergic to soy,eggs,etcetera . Why me and why now? EVERY thing I eat seems to cause pain . I have to take something for pain jus to eat. My iron n b12...calcium...how am I supposed to live like this?
 
Its hard when you ask questions inside your head like that. Why me? Why now? What did i do to deserve this? My friend asked all the same ones and its so hard to hear and try to know what to say. To be a comforting voice for her. I remind her everyday that no matter what she will always be the most beautiful person to me. To have hope and faith that things are going to get better even though they might be at the worst now. And if she loses hope and faith even for jus a min or a day or a week then i say i'll cling to to hope and faith for her. I won't let her lose those. One day when the struggles are no more near as hard as the yesterdays you'll find you've become so strong inside. With a determination and strength of will that others around you will envy and look up to. My friend now looks in the mirror everyday instead of covering it with a towel. She smiles more. She's realizing jys how strong of a person she really can be and is. So hang in there!! Don't give up.
 
Try to remember that you are not alone. Many of us ask those same questions. I cannot eat gluten, dairy, fresh fruit or most fresh vegetables, not much beef either. It sucks to be so restricted by diet, but after I asked, why me? I found out about my brain tumor. So remember, there are others asking those same questions. Keep fighting the good fight and do what you can to find the positives in your daily life, like your kids and your job and such.
 
when Elvis was born,doctors informed us he was allergic to dairy,wheat,eggs,soy,seeds/nuts. I remember crying with my wife,while he scratched til he bled. I preyed to Creator, take me...but save my son. I can take it,better than my child. He was my baby the past decade,and I will never let have this. He is normal now,eats everything ,he laughs n plays all day long. My son Eli is turnin 12 on the 18th,he is way bigger n heavier than me?! Emily is my oldest 15,makes me wanna buy a shotgun lol. She acts jus like me,eats how I eat.
Its hard...livin like this. That list of allergies . Last night..I tried some meat with a bit of ketchup ...big mistake. Lookin at the label it says may contain wheat soy milk n nuts!? That is what messed me up bad yesterday. Appt on the 20th...I will be back.
 
Had the date of my appt all messed up, it is today the 21st. Feel a it better. Glad about that.
Feel stupid more than anything. Many in my community believe I am one of the brightest people. Most do na know how hard i was for me to achieve what I did(As little as I did). I struggled eating and keeping up with others. Seems like everyone else had no cares in the world. In n out of the hospital with no real answers til now. Allergies....severe allergies?! Read all the food labels, an I learned never to trust em.
Get hungry and now the question is what do I eat? How much will this special diet cost me? Been through too much in such a short time...I can na believe I made it through all this.
Warner today, dietitian later this week.
Visited both Warner and the dietician. Learned what I eat everyday is too little. I honestly can na believe all the food one is supposed to eat everyday. Thinkin about it...I have never ate like that.
 
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feel soo bad today, past two were really rough. Doctor and dietician wanted me t try lactate with some dairy. I told em both dairy is poison. But they had to know...feels like some sick experiment.
Jus spent half my morning in a hot bath, and I want to go back in. Appetite is gone,tried banana only to have more pain.
Feet feel cold,nose running,sneezing,stomach pain above all. Felt this bad for a year now ...idk know if I can do another like this. Dietician really scared me, I have never ate what one is supposed to. Never had what I needed to perform well. I have always been a malnourished native son. Slept for two hours last night so, I am gonna try an rest.
Skin test to see all of me allergies next, an another colonoscopy(so bloody sick of those)to check stomach and take care of the severe internal hemeriods.
While I was lying own I became very nauseous...I threw up the banana with some bile. Pain hit harder after that...that was a 8 on a scale of 1 to 10.
I started sweating. I could not stand, I was even lying on the floor next to the toilet. I ingested a handful of painkillers... Jus so I could function.
What is going on?
I suspect I am having a allergic reaction to the suppository I jus tried the past couple days. Could be
Scared the living hell outta me...have na ate since.
The pain came from my stomach...left side and front left. It became unbearable. It was worse when I tried using the toilet an when I was wretching. it was like all of it cramped up into one lil ball of pain.
Really scared me.
 
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could it have been the milk products caused this? I would not think a suppository would. Did you call that dietician? Make sure you let them know what happened right away. I am sorry you had to go through all of that. I sure hope it helps them see what part of the problem may be..... what was the point of it?

keep us updated. take care
 
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Both the doctor and dietician wanted me to try more food. They both also wanted to test me. They wanted me to try lactate...so we could find out if it was a lactose allergy or a complete milk allergy. The way I feel now I am sure of a total milk allergy. I tried the lactate with a bit of yogert....but that was days ago. I feel soo confused and worn out. Tried eating a bit of fruit...but it caused pain straight away. Even swallowing my spit hurt for a while. I was on the verge of dialing 911. My uncle found me on the bathroom floor. God I wish this would stop.
The reason why I suspect it is the suppository...is because soon after taking it I had a hard time breathing...like it hurt to take in a full breath. I made myself take shallow breaths. That is a side effect of protomicin.


Today hurt more than most of the pain I have felt this year. It was worse than the test they did at the hospital....this was BAD. I prey I do na become like that again.
 
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No more Protomicin for YOU!!! Make sure you put that on your allergy list. I wonder if it is the milk protein, or sometimes you can have small amounts of dairy products and it doesnt effect you because it is in smaller doses. Are they having you keep a food journal?
 
Hey, ive read your story and really recognize alot of the things you've said from my own disease. I've had crohns for some years now, and I've never been in remission, always had the pain. Nothing really works for me, tried all the meds(currently on remicade). But ive been lucky with good doctors at least, who have helped me out alot. Ive had pretty much side-effects of all
the meds, same way it sounds like you have.

I wanted to share a few things that have helped me out a bit, with pain and side-effects etc. So it can hopefully help you and others feel a lil better, even if it's not much.

Like one thing i read that you've been on is iron pills, you really should NOT be taking those, they are really bad for someone who has stomach problems, and really blocks up your bowels. Try talking to your doctor about getting iron intravenous instead. I always had low iron, cause of bleeding, but now i get iron maybe a couple times a year, and it really helps on energy.

Also i read you have problems with your skin, rashes etc. Because of remicade, that im taking for crohns, ive developed alot of skin issues, i get rashes everywhere and developed a skin disorder called psoriasis. I've been at a dermatologist for this. And he prescribed a cream for it, it helps with ANYTHING. It's really amazing, called Betnovat Chinoform cream. You combine it with a normal cold creme, and it really works wonders. Like one rash i had on my cheek, that had been there for weeks, disappeared after 2 days using it.

And there's a thing you could try, for back problems. Really easy thing to do. You can use a blanket, or a tennis ball for this. If you use a ball, cut the ball in two, and while sitting or laying down, have each ball facing with the point toward your back on each side of your spine. You can also use a blanket or whatever to get the same effect. Cheap and easy way to get rid of some of the pain.

I dont remember what types of things you said you tried for constipation, but if you havnt tried Laxoberal, you really should. Never had any problems with it. And you can use it to maintain your constipation. If you dont take alot, and not that often, it only makes things softer, instead of diarhea.

Sorry for the wall of text. I just wanted to help, cause it sounds like you have so much going on that isnt good, so maybe a few things can help improve how you feel. :) I really hope they figure out exactly what is wrong with you, the stress of not knowing is the worst, and only makes you feel worse.
(And sorry if my English isnt 100%, im from europe.)
 
Thank you my friends...:). You guys...gettin emotional.
Umm. I will try your advice, iron shots and food journal. Did start the journal.

Really wish...my life was some kind of normal. But then...when I think about that...did I EVER experience normal. My life was a rollercoaster constantly going up n down na knowin what was going on. I try to make life....idk...na all about me. Like I will always try to ignore the pain or the way I am feelin for the sake of those round me. Like today, I awoke several times during the night. Stomach cramping and with water diarhia coming out. My stomach area seems on fire, my body is hot in jus that area. I am congested...running nose.
But today...today my baby is coming out into this world. I can na miss this...I missed soo many of my children's births. Most of the time I do na feel very well. Love my kids so much. It is amazing I can still produce em.
Wife went n late last night...I could na leave my other children and I felt like poo. Seeing all the lights go round n round made me dizzy. There were red and white as well as the dreaded red n blue oohh scary'.
I can not make THIS day about me...no matter how I feel.
Help me Creator!
 
My daughter was born at 142 pm weighing jus over 6 lbs...she is soo cute. I spent hours staring into her eyes while holding her. I made it jus in the nick of time...minutes before she came out. Seeing all that made me light headed an dizzy. But it was soo worth it...my lil baby girl.
We were going to give the first name of Elizabeth....but one of my wife's family had a girl...and guess what they named her. So we had to come up with another first name for her...Her mother chose Elisha...Elisha Stormchild ...right when she was born a Snow storm(It is still happening)!
I will have pics by monday...she comes home that day...her Mom was bleeding pretty bad so they want to monitor all weekend. My family ...makes me wanna be a better man.:)
 
Wow, I've been following your story for months now but don't think I've ever posted a comment to you -- but I just had to say congratulations on the birth of little Elisha Stormchild!! What a pretty name! I know she is a beautiful baby and would love to see a picture if you can post one.

:hug:
 
So happy for you... a little girl :)
also hoping your feel better soon my friend.
Let us know how your wife is doing.
and if you can, send pictures of your new little Elisha Stormchild.. beautiful name:Karl:
 
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Thank you all..my friends. The storm in honor of my girl is still going on?! Two feet of snow fell. Roads are really bad making it quite the journey to the hospital.
Had a rough night with pain on my left side. Woke up and let my dogs loose...they love the snow. I watched em jump, roll and play.
I must make it to see my wife and lil girl. I will na let the storm hold me back. Luckily my sister jus bought brand new winter tires for the truck...so I know we will be all right.
 
Congratulations to you and your wife on the birth of your little girl., Seth.
Take care in that snowstorm---safe journey.
Feel better soon.
Hugs and best wishes
Trysha
 
Omg...today. Woke up in pain...na only that...but Elvis woke up coughing. So I made em stay home with me. I wanted to take em to see a doctor...but last night the fan and heater stopped working in my truck. Had to have it repaired today...I mean I can na pick up my wife n baby in a ICE box. It came up to almost four hundred dollars and took all day. Elvis n I did na make it to the hospital til aboot 6pm. When we got there we visited his sister and his mother said she would take em the ER. I spent aboot two hours lookin after my baby girl til I went down to see what was going on. The nursery is heaven...ER is hell. Staff stared at me like I was a criminal....they ignored me for the longest time. When they did speak to me it was demeaning. They talked down to me like I was stupid. I wondered...what did I do?! Why am I being treated like this?
Finally got in there an found out Elvis has pneumonia...and had to be admitted. We were both crushed...I thought...I am forced to leave my son with people like this? I cried...Elvis cried. I tried to lie to him and myself and say it was na that bad. But it was...I hate myself for lying to my son.
His Ma said she would stay with him an our baby.
My babies...around monsters like that. She asked me to go get her a few things...probably since she knew what was happening to me.
Why?! Because I have long hair n braids?! wth...so unfair!
When I got back they continued their racism all the way through...it was a gauntlet of racism. I feel soo angry and confused. They made me feel like it was my fault my son is sick.
Really ruined a day I was trying to get some happiness out of.
:(
I pushed myself aside for my family...I do na remember eating.
My children are EVERYTHING to me. In a world like this?!
 
olb1.jpg


This is my lil baby girl...Elisha Stormchld :).
 
What a beautiful little baby Elisha is! Thank you for the picture. I know you are proud!!

I am so sorry about Elvis having pneumonia, and about the ER. That was a couple of days ago though; how is he feeling now? I hope he is better and that everyone is home.

Saying a prayer right now for you and your family.
 
she is soooooo beautiful...... thank you do much for sharing. keep us updated on elvis and love to all....
 
Elvis recovered really fast,maybe because we,his family rarely left his side. I was there alot...and his grand ma(kokom) was there when I was na. My Ma did na feel so good...doc checked her. She has pneumonia too?! I know it is my house...it is soo cheap. There are many cold drafts round the doors and windows of my house. Elvis rarely goes outside,since he his a small one and prone to gettin sick easily. Wonder if that has something to o with the way I feel.
Yesterday was really bad...I could barely move. Pain seemed to move to the front part of my stomach(round the bellybutton). I woke up in pain...and it got worse as the day continued. I refused to take any painkillers, thinking I could do this. I went to he toilet soo many times...I bled. I soo wanted that day to end. Thought to myself wish I could sleep this off. If I could knock myself out, I would ve ...yesterday. I know many would say go to the ER...but the way they treated me last time(And many times before that)makes me never want to go there again.
I prey today is ....idk....better than yesterday.
I could barely sleep...and the baby was up. So I checked on her....changed her diaper and spent some time with her...she made me feel a lil better.
 
I still believe I have crohns...it comes and goes...with varying levels of pain.
When I get like this it lasts for weeks...then I get a lil better. Enough so I could eat.
However, when I am in this amount of pain...I can barley eat. It seems like no matter what I try to ingest will make it worse. I did na have any milk products...I can na understand it. I can na understand any of this. Makes me feel soo powerless over my life and it's direction.
The past ... three nights. I have been getting pain in the top left of the stomach...it almost feels like the bottom of my lung. But it does na seem to be related to my breathing. First night it was slight...now it has built up. What next?
 
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Yesterday...I really did na feel too well. But I had to go to the band office, adding a new member to the family n all. I sat in this chair...that felt like it was leaning forward. My hip has been bugging me ever since...pain has been building an building. My limp has become severe.
I soo wanted to go back to work...but is that possible. Everyone else at the band office seems to think I can na handle it. Now even sitting in chairs is giving me problems...I am starting to agree with them. I can na work...I can barely function. Even doing a few things seems like concurring a mountain. Who am I kidding? Workers at the office want a updated medical release from my doctor...I am going to have to agree with em and do that.
Appt next week...I do na feel soo good. :(
 
I think you need to find a new positive outlook. While you are going through a lot of difficulty, you do have some great new positives in your life. A new baby, your other son recovering from his illness. You are still here to enjoy your family. It can be difficult to suffer through any chronic illness, but there are good and bad ways to live with illness. You can get out of bed and choose to have a good day, even if you have pain and are having trouble eating. Most of of us here have the same struggles, and wish that you were having more success with diagnosis and medication. A lot of how you feel and how you cope and are able to appreciate and enjoy your life is really on your own shoulders. When you are feeling miserable, look into the face of your new child and use the love and joy you feel to boost yourself up.
 
My babies make me feel better. Doctor did give me anti depressants and they do help.I still continue to work out of my home on computers...jus got a job last night. But my hip...omg...it is now worse than yesterday. It is my right hip ...wish it would stop now. 3 days now. I feel like draggin my leg when I walk. I am trying to have a positive outlook...but this is getting in my way. Sitting in a chair...I can na believe it. I have to do soo many motions throughout my day that require the use of my legs an this makes it all soo much harder. Wish lookin at my kids would take or make this feel better. My other children have a day off of school,hearing them laugh and play makes me smile. My wife has been spotting for LONG TIME now she went t see the doctor....it is jus the baby...my other three kids(Emily,Eli n Elvis) n I at home today. I am caring for my baby. Put on some a535...kinda feels better.
I prey Cheryl is all right,love her soo much. Going through all of this, I have seen her be soo strong...makes me love her even MORE.
I am wondering if how I feel is related to me carryin my lil one every day.
Feels like the pain is centered in my back now...round my kidney area. It does na feel that bad in the morning ...but it gets WORSE throughout the day. I also read that it could be from a inflamed colon. Jus wish all these stomach issues would stop...so tired of pain.
Tried a heating pad...seemed to make it worse...guess I gotta try cold.
This is what I am going through....
Severe abdominal pain
Diarrhea, sometimes bloody
weight loss
Lack of appetite
Rectal bleeding
Joint pain
Skin problems(Rash on my stomach and hips)
Slight re occurring Fever

I am losing weight again...I can feel it. My wife noticed my weight and the rash.
I was soo pre occupied with pain that I did na realize I had it. My appetite...t is like...I literally have to build myself up jus to eat. I feel better when I dont eat.
In soo much pain now...it is hard.
 
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Omg ....I love Dr.Werner. She jus prescribed me Salofalk. Even without a diagnosis. She listened to me ...I talked about my rash, joint pain, fever, sever abdominal pain, and weight loss(lost ten pounds since I visited her last). She said...This is Crohns...I am jus gonna give you a crohns medication and we will see how that works...since you are in agony. She said it is soo frustrating watching me get smaller n smaller with no diagnosis.
I hugged her...I did na wanna let go. She also prescribed a STRONG painkiller that must be approved by Ottawa, which will take a week.
She also ordered a xray of my hip n lower back. Going back next week for results of xray and to receive the painkillers.
I feel like she saved my life.
 
I'm glad to hear you've found a good doc! Now make sure you are extra careful with your eating, stay away from dairy and those foods you know are causing you pain. Give that medicine some time to work and you'll be feeling better in no time!
 
nativesith said:
Omg ....I love Dr.Werner. She jus prescribed me Salofalk. Even without a diagnosis. She listened to me ...I talked about my rash, joint pain, fever, sever abdominal pain, and weight loss(lost ten pounds since I visited her last). She said...This is Crohns...I am jus gonna give you a crohns medication and we will see how that works...since you are in agony. She said it is soo frustrating watching me get smaller n smaller with no diagnosis.
I hugged her...I did na wanna let go. She also prescribed a STRONG painkiller that must be approved by Ottawa, which will take a week.
She also ordered a xray of my hip n lower back. Going back next week for results of xray and to receive the painkillers.
I feel like she saved my life.
Click to expand...

This is good news! Praying that you will improve and feel better soon.
 
This is fab news not that you have got crohn's but good news that you have finally got a diagnosis after all these yrs. hoping you start to feel a lot better when you are on the medication. Keep us posted on how you get on. Big hugs
 
Thanks guys...could na have gotten through this with out ya.
Did feel great til this morning...woke up with bad cramps in my stomach...my hip hurts bad again....running nose. IDK may have gotten a bit too confident...and I tried to eat too much. But I am gettin soo skinny...I feel weak this size...and with my hip. I live in a bad neighborhood...must protect mine at all costs...even if it takes my life.
I have to be strong now...more than ever.
I had some fruit cocktail , berries an plain ol meat last night . Tried kind of what my ancestors ate. Thought it would be best for me.
Used to the stomach pain...but my hip so na use to that. I find myself na wanting to go out at all. I hate this limp.
But no matter how I feel....my lil Stormy(Our new nickname for Elisha) always brings a smile to my face. She is doing great! She is the healthiest child my wife n I had yet.
 
One week since I started taking Salofalk...n I feel better. Pain has lessened...appetite is increasing. Jus do na wanna eat too much...n get over confident. I see the doctor today for results of the xray(My hip feels better now?!) n to tell her how I feel.
 
Sounds like you are getting better! Just take your time and increase food intake only in small increments. Stay on track, it sounds like you will be feeling great soon.
 
I really am feeling better. One week since I started taking Salofalk...it feels like waking up from a nightmare. My mind was soo clouded by pain...most days I could na get past it. I had to force myself to do many things throughout the day...like eating.
Now I feel like actually keeping active...I feel like eating. When I do eat now...there is less pain.
Cant believe it took this long. Doctors had told me there was nothing wrong. I was told that men my age should be working(Really?!). In june...that was the month I got REALLY bad. I thought...I am going to die...SOON. GI and two family doctors gave up on me completely(One was swearing at me).
I love Werner...she saved my life. She said to hell with a specialist diagnosis...and gave me Crohns medication. 500mgs of Salofalk three times a day.
My hip she said is the tendons...which will need physio.
But yeah...today it was like ...Yay you have Crohns?! Sounds messed up...lol.
 
I'm so glad your feeling so much better I'm glad you found a doctor that knows what she's on about and listens to you. Keep us informed and I also can't believe how long it has taken
 
Thanks ...and thank the Creator. I feel good...n when I eat it does na feel like razor blades going down...I do na feel nauseous...even using the washroom seems normal ...er lol.
Felt soo good...I made enough money(fixing a lot of pc/laptops)to buy a Moss bag for my daughter. It felt good to provide the traditon. I will post pics later...she is getting soo big. 28 days old an she is almost twice the weight:)
 
Pain in hip came back today...but I noticed it came after I wore jeans. Wearing jeans is what is making my hips hurt. I bought new pair..since all of my old clothes were too big. I wore it right before the last time it hurt...it is a pain that builds n builds(it gets worse then my stomach pain) going from left to right....also notice it makes the affected area hotter and effects my mobility.
Seems like I can only wear big sweat pants now.
 
Feelin better latley...but. Havin a few issues. Like hiccups..had em most of today. Hurt my throat an chest. I got rid of em...then after eating they came back.
Also getting rashes. On my chest, face, hips and stomach.
Here is a upated pic of Elisha in her Moss bag.
be84.jpg


I wish I could have ...at the very least...a lil flash of normal in my life.
Woke up with the sore feeling in my stomach...tried using the rest room.
Only thing that came out resembled saliva. Thinking aboot that...know I seen it before(other times it was pink/red saliva). Did na eat anything I am na supposed to.
Jus wish life would be...easier.:(
On top of the saliva like poo...I have the feelin of like...pills stuck in my throat and my butt feels numb(more on the right side). I got the feeling right after I got heart burn from eating potatoes of all things.
When I think aboot this...I realized...it has been happening for quite some time. I can remember the feeling of my throat getting smaller an making it hard for me to swallow really anything. It ruins my day most times and stops me from eating.
 
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Durin this time of the year...things always seemed to get bad for me. Past three were extremely bad. Kinda felt the same today. Woke up feeling pain and nauseousness. Has na gone away. Had to do some shopping and I was like a zombie...must looked like one lol.
But I also had a appt with Werner. She asked how I felt on Salofalk on a scale o one to ten...ten was feeling great. I said about a five...but it was worse without it. Now she gave me Predisone with Salofalk.
Hope it works an makes this the best holidays I had in a long time.
Merry Christmas and happy holidays EVERYONE :).
 
This past holiday was the best I had in a LONG time. Prednisone has worked wonders. Before... ANYTHING I ate did na go easy. Looking back I can only think of SEVERE flare up.Started the meds on Christmas eve. Each day it seems like I am getting better,eating more. Still have a bit of pain, but it is na as bad as before. Getting joint issues, like pain in my knees and elbow.
 
Prenisdone worked great. Weening off of it I felt symptoms coming back. Symptoms like pain,panic attacks(episodes getting hard to breathe), bruising easily(Have a huge bruise o inner right knee I have no idea how I got it?!), Cramping in legs and feet.
However when I was on it(especially in the beginning)it was great. In fact, I never felt that good in a LONG time. I remember Werner saying if it worked well she would basically keep me on Imuran. Appt today.
Also...I m having a hard time jus stepping out in public. Every time I do, something happens that makes me na wanna step out again. Few days ago I went out to get a few things and my foot cramped up really bad. I had to take off my boot and massage my foot. My brother thought I was crazy:(.
 
Taking care of a newborn baby is hard work and time consuming. Find myself pushing everything aside for my daughter. She has gotten soo big....I swear she is the size of a 5 to 6 month old at 3?!She has the most beautiful smile.
I felt good for a while. I get that low circulation feeling(Sometimes feels like burning) in my feet and legs after I have a bowel movement(Which lasts all day, the feeling na the movement). I think that is my internal hemorrhoid pushing on something else from the strain.
Stomach issues still arise(But I know with out the crohns meds it would be way worse). Yesterday i woke up with pain. Had a movement soon after. When I tried to eat I became very nauseous with increased pain. Makes me scared to eat now.It was a bad day yesterday..but I got through it.
I was also fighting another issue. Facing the public and/or going out. That is becoming harder for me to do. I do not know why...wish I was na like that.
That is hard for me and my family to deal with.
Do have a scope coming up...wish it was sooner than it is. Months away really.
 
Thanks for the update Nativesith.
It is hard work minding a baby but also very rewarding.
Sorry to hear you are having a bad time with the crohn's---it can be like that---good days and bad days.
If symptoms increase you may need to phone your GI specialist for some advice
Feel better soon
Hugs and best wishes
Trysha
 
This is a bad...a really BAD day omg. Feels like I have a wound inside...I can almost pinpoint it. Top of my left hip. Pain radiates round it...hurting my left leg. Hard to walk today.
It was a hard night, barely had any sleep. I woke up with pain and had a movement(something I work extremely hard on doing everyday).
Doctors office called reminding me about the GI in April?! April of all times...I prey I can make it til then. Seems soo far.
 
April does seem to far away especially when you've got problems. Is there any chance you can go on a cancellation list.

I hope you feel better soon..:ghug:
 
Suggest you call your GI and let them know what is happening
Sorry it is such a bad day for and hope for better things.
Feel better soon
Hugs
Trysha
 
That is a problem...I am going to see a new GI in Red Deer. I do na even know his/her name yet. All as the bad time continues...feel soo bad. Like a alien in gonna burst out of my front bottom left stomach. Appetite...gone. Energy...gone. My nose is running...especially during the first half of each day. Have a slight fever and rash(over my stomach hips and chest). Bruising too easily.I am having a bm at least once a day.
This disease is messing with my head. Like I am na good enough for anything...find it hard to go out in public.
Gonna call and make a appt with Werner tomorrow. Hope tomorrow is better.
 
Pain has gone down a bit....that was hard to bare for a couple days.
I kind of go through the same situation everyday.
I awake feeling pressure on my side/sides. Wakes me up early(No matter what time I went to bed the night before)and it will na let me go back to sleep.
It is during this time of the day I MUST try have a bowel movement(Which is almost ALWAYS diarrhea). If I do try later during the day ...I strain and bleed. The only time(during the later part of the day) I do is when I know it will come out.
Also during the morning is when I get a runny nose. This is na a virus. Everyday I feel like I must keep drinking a hot drink just to relieve it a bit. Some days that lasts until the evening.
Again in the morning...I get the feeling of low circulation in lower half of my body. Sometimes it feels like it goes from the stomach down...others it is my right or left side. Makes me move slow,limp and or stumble.
Without my medication...I know it would be way worse. Without it I was in agony...with it I would say I am feeling less(like about 40% less).
I got a letter(Who uses mail these days lol)from the GI I visited last year. He wants to see me in May. So I have a GI appt in April...and another(different GI) in may.
I prey to the Creator...one of em provides a CLEAR Diagnosis.
 
I'm sorry to hear your still in pain.:ghug:

Hopefully with 2 GI's one will figure out whats happening.
 
Thank you my friends :) Idk how I would ve got through last year without you all.
I understand it all better now. I know it is a battle everyday. I know I MUST try to have a bowel movement at least once a day. I know even doing that I am na outta the woods. Joint pains,stomach pains, blood...are all hard to get over.
Kinda freaking out about the runny nose thing...it has been everyday for years now. My wife noticed how much Toilet Paper and tissue we use as a family. She thinks it
is the kids being wasteful...to ashamed to tell her it is me.
Did a bit of research on running noses and pain(that can not be explained by tests).
It might be in my head...literally. I may have a tumor in my head :(....Creator help me.
 
Appt today with Werner...totally forgot aboot the nose. We talked aboot my stomach. she figured since I gained a lil weight that I was doing better. I informed her it was a war jus to put on 10 lbs. No matter what I do I feel a pain jus left of my belly button...like a wound. A wound that can feel the slightest of movements...like a bump er a shift of weight(Can feel it bad if I lean forward). I know without the Salofalk it would be like soo much more worse...least I have that.
But now I have two appts with two different GIs...one in April the other in May. I do na know what to do. You see I am wondering if I should stop taking my Salofalk(even jus got a prescription for Prenisdone today) in the hope of receiving a actual Diagnosis. Jus the thought of doing that scares me though. My Doctor says it might be a good idea. Idk though.
My daughter is doing very well...bigger than EVERY baby her age(4 months). I will post a pic of us soon :).
My wife even bought me a Chihuahua to make me feel better...and it works lol. Love that lil Taco(His name). Think he knows I am sick...as he is always by my side. Actually feels good when he is on my side. :)
 
"This is a bad...a really BAD day omg. Feels like I have a wound inside...I can almost pinpoint it. Top of my left hip. Pain radiates round it...hurting my left leg. Hard to walk today.
It was a hard night, barely had any sleep. I woke up with pain and had a movement(something I work extremely hard on doing everyday)."

That's a good description of me too sometimes. Same area exactly. I wonder what's there functionally that would give two people such a similar issue? Anyway, I had a laparoscopy some years ago and they found an adhesion there and cut it and it was gone for a while. But I think they missed another one higher up, closer to the flexure near the transverse colon. That one pains me like this if I'm not on top of the fish oil and daily aspirin.

Just wanted to let you know that you're not alone in this. There are others like you and hopefully you'll soon feel better.

Not sure if those meds will help you. It's worth trying and seeing. Over time, some meds have helped me, and others have not. For me, yogurt/kefir helps more than most things except antifungals, I'll take any excuse for a dose of antifungal. I know that works for my body. With some experience, you will know what works for you.

Keep researching and maybe consider a book called "Death by Food Pyramid" by Denise Minger, it really helps if you're on a journey to find your health again. No need to buy it, it's probably in a library. (hugs)
 
Having more rough days. On top of the pain yesterday I had more issues. I prepared a pizza(for my family na for me)that was smothered in garlic. The smell made me sick. I became nauseous. Soon after my left arm and leg started to feel funny...like they were about to cramp up. I thought...am I going to have a seizure? I had to lie down and rest. When I awoke I went straight to the toilet where I saw bright red blood.
Day 4 off of Salofalk...:(.
 
If you feel better taking the salofalk then keep taking it.
This is something to discuss with your GI who prescribed it and let them know it helps you a lot.
This point can also be helpful to your diagnosis since it is a drug used for inflammatory bowel disease..
It sounds as if you should be on medication since you find it helpful.
Feel better soon.
Hugs and best wishes
Tryhsa
 
GI never prescribed it it was Werner.
Today is bad omg...I want to take the salofalk and prenisdone...but Werner said it would be a good idea to stay off em til after the scopes. I do na know if I can make it that long without em.
The end of every month is always bad...seems like it is always worse during this time. My scope was re scheduled from April 7th to the 30th.
I am fighting it..with all I got.
 
It has been a while...since taking Salofalk. It is hard without it...hard to use the toilet. Seems like my stomach wants to stop and constipate itself.
Cold feelings are coming back. Past few days I ave felt really cold...especially in the lower part of my body. I want to stand on a heater all day:(.
Top of all dat...I have started sleepwalking alot recently. My wife found me dazed n confused wondering round my house late at night. Happening more n more...scares the bejesus out of her.
 
Omg....pain nauseousness, cold feelings,no appetite(weight loss). It is happening all over again. Eight days til my scope with the new GI and my GP asked me to try stay off the meds(Salofalk & Prenisdone). IDK if I can do it anymore...feel way better when I am on at least one of em.
Seems like I will put put through a wringer with a GI scope on the 30th and again on May 7th. Creator make them see this...how can they not?
Creator help me get through this.
 

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