Heading to ER, thought I'd say Hi first!

Hi Everyone

My parents have stormed my doctor's office today in frustration so I'll be heading to emergency soon but I thought I'd introduce myself first. I've been reading this forum for a good long time now and wanted to get out of lurker status. I have much to say but I'll keep it short-ish as I'm peeing blood! (In lots of pain and kinda weird feeling so please excuse the craziness )

I'm pretty desperate at this point as I'm sure a lot of people are who come here looking for clues, support, answers, what have you. I've lurked on other forums but I keep coming back to this one. I feel like it's where I would belong but I'll share my story in as condensed a manner as I can in case I may be going down the wrong path. If anyone has any ideas or any thoughts it would be greatly appreciated.

1982 - Pyloric Stenosis at 9 weeks. I have a 3 inch scar from that surgery. 3 weeks prior to that my inexperienced dad fattened me up with Pablum while my mom had her gallbladder removed. He had the same surgery when he was 5 weeks old though and it is hereditary so I'm not sure if that is related at all. I have been told by docs on a few occasions throughout my life that my stomach pains could be from adhesions but no treatment has ever been recommended.

My childhood was painful. Lots of bone pain all over, especially my legs. (Was told it was growing pains. I'm still growing at 28 years old I guess.) Lots of stomach aches, couldn't eat fried eggs, sausages, ice cream, etc. most times or I'd be hurtin'. Lots of dizziness, headaches, abdominal pain, fainting spells, low blood sugar, low blood pressure, swollen lymph nodes, itchy/sensitive skin, muscle spasms/twitches, weird random allergic reactions to things (like raw mushrooms one time sent me to hospital with a horrible rash all over), and so on.

1997 - Diagnosed with mitral valve prolapse and valval regurgitation. Was on beta-blockers for a year or so. Around the same time I started getting a new kind of stomach ache. This one burned and I always felt like it was something eating me from the inside. It only goes away if I lay down or it will just keep getting worse. Sometimes it goes away for months, other times I get it just about every day.

2000-2001 - Started getting D bad. I was about 19 when it started I think. Maybe still 18. Had my own bathroom though in my own house so that was nice. Played a lot of Diablo, Sims, etc. and did a lot of pooping. It petered out eventually and I forgot it was even a problem for a long time.

~2005 - I had Erythema Nodosum on my shins so I was referred to a GI. A colonoscopy wasn't done because I was pregnant at the time so I never got a proper diagnoses even though by the time my GI appointment actually rolled around my daughter was already born. They just said I had IBD but they didn't know "which one" after giving them a very lengthy medical and family history. I didn't know what IBD was at the time. I had heard of IBS and ended up confusing them to make a very long story short. The docs were less than stellar about giving out helpful info.

2006 - Had an incomplete miscarriage 5 months after my son was born. Lost a lot of blood, almost died. When bleeding stopped, my blood count continued going down but they never did anything to figure out why. My white blood count has been both high and low on different occasions. Never know why. It's currently on the low side which I was surprised about. I was expecting it to be high.

Anyhoo, can't remember when but a few years later during one of many ER trips a nurse corrected me when I said IBD and said no, I had IBS, so I've been treating myself for IBS and steadily losing weight. Right now, I'm having bladder issues now too. My mom must have let the doc have it this morning because I should be getting a colonoscopy in a day or two. I'm fairly certain I'm full of inflammation at the moment yet my CRP was negative a few weeks ago. Any other way to check for inflammation for people who normally NEVER show abnormal results?

My tests were neg while I had a gallstone stuck in my bile duct one time. My whole life has been like that. Negative test after negative test yet the pain and symptoms continue getting worse.

Hopefully I'll get some more answers in the coming days though. Not sure how long they'll keep me in there. I don't trust doctors, many nurses or most hospitals at this point. I've been burned too many times already and I'm not 30 yet. I'll be back though and will provide an update. Maybe I'll get a real diagnoses!

Oh yeah, I'm tapering off Pred right now. Doc finally gave me some after he said "are you sure it's not IBD instead of IBS?". It worked awesome right away but made me severely constipated so the pain from that was worse than any pain the pred took away. Skin tag came back along with a lovely case of Hemmies. Worst case yet. It hurt so bad, like I was being ripped apart. Now the other pain is back with a vengeance too. My right shoulder has also been throbbing and keeping me awake for years and it just stopped for about a week. It's starting to get sore again now though. Most of my pain starts on the right side, especially right groin and my bottom ribs. Even the arch of my foot hurts. When the pain is really bad it throbs and I limp. Bending over hurts. Eating hurts. Everything hurts!

Despite the pain, the main issue is that I can't stop losing weight. I was 89.5lbs this morning. I'm 5'3". I want to have another baby. My periods are so weird from being underweight. I need to be a mom again and get my life back. It hurts so bad to see my kids look at me the way they do, wishing they could do something to make their mommy's tummy feel better. I can't have my family seeing me like this. It's killing me. I tried Ensure but that just makes the pain worse right now. I've done the low residue diet, cut out sugar and starch, red meat, all that stuff. Nothing is helping. I can stomach fresh farm eggs and apple sauce usually. The nausea doesn't help but I smoke a bit of weed in the vaporizer to stimulate my appetite and control it. Doesn't help with pain much but it helps relax my body so I can control the pain with my mind. I discovered it helped my stomach aches and insomnia a couple years ago and started vaporizing awhile after the nausea started getting really bad.

I do a lot of meditating. Meds I've tried so far just don't work very well for it, except sometimes Buscopan. I've tried progressive muscle relaxation, deep breathing exercises, yoga, belly dancing, music therapy, OTC stuff, herbs, supplements, hot baths, heating pads, you name it. Chamomile tea is my favorite though. That calms my tummy right down and I can stop D with it and peppermint tea too. That gives me heartburn sometimes though. But anyway, I have to stop typing!

I still left tons of stuff out but I have to go pack a stupid hospital bag now and this is already tremendously long. In the meantime, my heart goes out to each and every member here and everyone's family. I don't know if I really have Crohn's or what it is, but it takes a very special and strong person to overcome things like this and I think everyone here has a bit of angel in them. Gentle hugs to everyone and I hope I make it back here soon!

:ghug:

:welcome: Gassycass..catchy name! So glad you joined us! I could't help but read every word because your journey is almost mirror image to mine! I had a miscarriage but only in the first trimester and for that you must of suffered greatly. I am without a doubt in my mind( my opinion only) that you have some kind of IBS. It took many tests and blood work , negative results every single time! I was so sick lost 40 lbs in 2 months, and that was enough for me! I demanded to see a specialist in Toronto and my gp and gi in Brampton Ontario sent me to a teaching doc and was dx within minutes. I have had 2 resections, appendix out, gall bladder out, dx with a Hiatus hernia, and arthritis comes and goes but I am much older than you! I had Pyoderma Gangreosum, thank God only a very mild case! After that boom my second surgery was inevitable. Like you I tried everything under the sun, you name it, been there done it. Buscopan does squat though for me. Dicyclomine works way better and it is working for me.

You are welcome here even if it turns out to be IBS, but I am moving towards Crohns symptoms , I know it isnt nice to say to have but getting a proper Diagnosis helps to gain perspective and treat it. I do not bleed but my sister does, everyone has different symptoms ...but your post was my story almost in a nutshell.

Please let us know how you do, I have another Colonscopy on Thursday, so as much as they are not fun, (worst for me is no food lol) they tell more of the story IF they can get past the appendix towards the Ileum. Biopsies will tell more but you have to wait for that. Good luck, hope you stick around!:ysmile:

hi gassycass welcome, wow you are been through alot. I hope you stick around

Hi Cass, welcome to the forum and keep your chin up. Easier said than done...I know.

You have been through a hell of a lot and I wish you all the best for the future.

Liam

Welcome Cass,
Wow, what a story! Hope all goes well at the ER, been there done that. I always dread the moment you know you're going....:goodluck::goodluck::getwell:

Hi Cass and :welcome:

Whoa, you have certainly been through the wringer! To me a lot of the symptoms both intestinal and non intestinal certainly sound like what many people suffer with IBD. Don't be too dismayed with the negative test results either 'cause that seems to be a common thing around here too. Roo was one that was plagued with normal results, the only time anything showed was a white cell count that was in the septic range the night before what turned out to be emergency surgery. I hope you get the answers you need with this hospital visit and then some much needed relief! Good luck and welcome aboard!!!.........................................


:goodluck::goodluck::goodluck:


Take care,
Dusty

Hi Cass
and welcome

My God! You've got the Full Monty and then some! All the Crohnie symptoms everyone talks about all in one fell swoop, all the treatments and tips, you've tried them all!
I really hope you're ok in hospital, and I'm sure you hate the lot of them! So do I!
From what I've learned about IBS, you don't lose weight with it! hope you get a diagnosis soon, glad you found us, let us know how you are
lotsa luv
Joan xxx

Hi Cass, welcome!! Well, normally, I'd prefer advice from a nurse over most docs but I wonder about the ER nurse who overrode your IBD dx with the blanket IBS!! What did he/she base that turnaround on?? Apparently, they were wrong as you are not being helped by the IBS treatment.

I gotta say, I've never seen a story quite like yours on here...the doc asks you if you are sure it's ibs and not ibd!!!! Isn't that their job to determine?? I hope you find a competent doctor who can make a firm dx instead of all this wishy washy maybe stuff you've been left with til now!! Good luck!!

Some hope

Hi, this is Cassie's mom. We did indeed admit our skeletal daughter on Monday, but the surgeon we had hoped would see her Monday afternoon to schedule a colonoscopy didn't show up until Tuesday night, after I ran into a doctor who is a friend of mine who said he would remind the surgeon not to go home until he had seen her. If I hadn't run into him, I was going to phone the minister of health's office in my official capacity as a reporter to see if I could get any action. This should not be necessary, but, sadly, it sometimes is. To our great fortune, there is a nurse on the ward who has gone through the same kind of hell our daughter has, in fact they used to be on the high school yearbook committee together. It took her 10 years to get a diagnosis of Graves disease, and she was very ill. She is fine now so is completely on Cassie's side and is pushing for more tests. She assured me that the dietitian had poured over her diet info (she's been keeping notes) and the powers that be were interested as well. As of tonight, Wednesday evening, she has now had a x-rays, a CT scan and there are plans for a either a gastroscopy or colonoscopy or both. Both, we hope. The surgeon admitted she is a zebra and that he will not stop looking until he finds something! How rare an attitude! I have been taking my daughter to doctors since she was five weeks old, and if they can't find anything wrong, which they usually can't, they just say come back if it gets worse. And of course, it always does. We are hopeful this time they really will try to find out what's wrong. She has almost nil quality of life the way things are. She was in tears because she was in hospital on the first day of her daughter going to grade one. I have been very frightened. The last time one of my loved ones was so sick she died in my arms. Thank you to everyone who responded to my daughter's story. Whatever it turns out to be, knowing she is indeed not alone has been incredibly important in keeping her going. Thank you so much, and we will keep you posted. Hopefully the next post will be hers!

Hi Gassycass's mom, Thank you for posting to let us know what is going on. I truly hope that she finds answers this time around and gets on the road to feeling better. Please keep us posted and let her know she is in my thoughts and prayers..
good luck

Thank's for the update Cassie's mom ( love her name, 3 yr old g-daughter is Cassie also) I will send healing thoughts and praying that the Drs find something and positive things happen.
Tell her I said good luck and sending her cyber huggs.

Thank you so much for letting us know!!! I wondered how she was doing. If we can help you or your daughter in anyway, please let us know. My heart goes out to both of you! ((hugs))

Welcome Cass and Cass's mom
I hope you are doing better and gaining weight! AND I hope Ms. Cass is hanging in there as well. I can relate to the running around the block and not taking things seriously. I have gone to a doctor a long time ago and got in trouble for not going in sooner and having the symptom get worse (a different city) and now they are doing what they did to Cass... come back when it gets worse..or atleast it feels that way. I hope they did the scopes and everything is ok. Peeing blood would be scary. Did they ever figure out why?

Anyhow, just wanted to say hello and welcome you. There are a great group of supportive people here.

Wendy

hi Cass & Cass's mum.. welcome both of you to the forum!

really sorry to hear what Cassie's going through right now, and what she's had to go through in the past... it seems incredible that nothing in the way of diagnosis has come forth before now, but thank goodness it seems that she's in safe hands now. well done to you for all the pushing and fighting you've done to get help for her - as parents we shouldn't have to, but all too sadly and all too often it's our stubbornness that gets the results.

please keep us posted, and give Cass our love & good luck wishes. x

Hi Cass and mum
Hope everything turns out ok for you,let us know what happens,stay strong lol.
peakey 1553

Still sticking up for tests

Cassie is able to read all your encouraging responses, but the phone doesn't have enough jam for her to log in. Thank you so much for all your support. She is doing her best to throw her 87 or so pounds around and told her doc this a.m. that she wants the colonoscopy asap so she doesn't lose any more weight. Best to all on this forum and thanks again.

thank you so much for the update on cassie. We appreciate you keeping us posted. I sure hope cassie is getting all the testing done that she needs and they figure it all out. I am praying for you cassie, take care of yourself and dont back down.
I have to laugh at picturing you throw your whole 87 pounds around, cause I only weigh 84 and do the same thing. lol
You are in my thoughts and prayers. Get some rest and kick some butt......

lots of hugs to you

mesenteric artery ischemia

This is Cassie's mom again. Today she had a barium swallow to confirm what they think she has. My daughter always does have to do something different. They believe she has chronic mesenteric artery ischemia. We've googled it and it certainly fits. She is waiting to see an internist and will probably have to have surgery to correct the artery, and we are execting she will lose some of her bowel as well. It's a pretty scary diagnosis, but it is at least a diagnosis and now they can begin treatment. There are no anecdotal sites I can find and no forums such as this one to get any info from people who have actually experienced it. It is not all that common, at least not commonly diagnosed. Her spirits are pretty good, but she knows there is no easy fix. Please keep her in your thoughts, and thank you for all your responses.

thanks for the update and cassie is always in my thoughts and prayers. I hope this is start to the road to feeling better.... she has been through enough already. Give her hugs and tell her to keep up the good spirits...

In our thoughts and prayers

Hi Cassie's mum, thanks for keeping us updated. Did they tell you what they think caused the problem?

I hope and pray all goes well with the surgery and you will all be in my thoughts.......................................


:goodluck::goodluck::goodluck:


Take care,
Dusty

Hi Cassies Mum

I've never heard of this so I googled it, it looks promising that this is what is happening to Cassie! Really hope they can sort her out, she's been through enough!
Give her my love and best wishes, and hoping for a speedy recovery if she has to have surgery
Joan xxx

Tube feeding

They are feeding her with a tube so she won't lose more weight. It was pretty awful because it made her horribly nauseous. It was very hard to see. But, after a while, they were able to calm her with a sedative, I think it was Atavan, so she could sleep through most of it. She's had two bags of food so far, and is also able now to sip herbal tea and eat watermelon chunks. We are still waiting to transfer her to the specialist's care, but in the meantime she is getting some nutrition which will help her get enough strength to get through the next round of tests and treatment. Her tests are showing that none of her organs, including her bowel, have had any lasting damage. Thank heavens! That was one of our fears. Sje's not out of the woods yet, but it's looking much better. She is thinking about all of you.

Thanks for the update.

It's a relief to hear that there is no lasting damage. I hope everything continues to settle and she can get some much needed rest and nutrition. Please continue to keep us posted and good luck with the upcoming tests and treatments!

Keeping my fingers and toes crossed, :hug:
Dusty

Thank you Cassies mom for updating us on her. It is great that her testing shows no damage to her organs or bowels. I hope she can get some strength back but the feeding tube. I am sure she still has many tests and of course the treatment but at least now they are helping her.
I am praying for her and she is in my thoughts.

lots of love and hugs to you all

Cassie is one lucky girl to have her mom with her every step of the way. You're a very special momma.

hi Cass's Mom, and {waves} to Cass

sounds like things are moving forwards in leaps and bounds now! it's scary to get any diagnosis of something, especially a condition like you describe, where not many people have experienced it that you can find - but like you say, it's a diagnosis, an explanation for what's been going on, and now hopefully Cassie can get exactly the right help she needs to get her back on track.

i'm glad to hear that the organ test results were so encouraging - that must be a massive worry off your minds - and also that she's now taking in nutrition. i don't know if this is the same set up as i had, i was given feed bags via an IV tube straight into my jugular when i dropped to 5.5stone in hospital many years ago, and it gave me such strength, my weight increased in a matter of days.

i'm keeping everything crossed for Cassie, & she's in my thoughts... please give her a hug from me and keep us posted!

thanks

Thanks everyone for your positive thoughts. Each day we have more hope. I'll keep you posted.

Still waiting

Hi, Cassie's mom here. We finally have a colonoscopy scheduled. But she's also still in hospital waiting to be moved to a specialists care. She's eating, but it hurts.

Hey Cassie's Mum,

Thanks for keeping us updated. I hope Cassie finds some relief soon. Thinking about you all.

Take care, :hug::hug::hug:
Dusty

I tell you my heart hurts for these young people. I want to start my own foundation that would allow me to go and sit with each one and just be with them for support and a hug! I hope Cassies procedure goes well.

Ann

Hi Everyone, this is the actual Gassy Cassie here!

I escaped for a few hours before heading to a different hospital. I wanted to log in and thank all of you so much for all your words and support which have meant more than you can know to me and mom. I wish I could reply to each one of you right now but I'm running out of time.

I have no idea what to expect from this point on but at least I got the colonoscopy which was negative, big shocker there. My joint/muscle pain has been getting difficult to deal with again but nobody seems to think that's a clue. I've had many nurses ask me if I have Chrohn's and I keep thinking, "You tell me!". Doctors are pretty stingy with their IBD diagnoses I guess.

I'm off to see the wonderful wizard of Saskatoon though and apparently he's very good. I'm hoping he'll get to the bottom of this right away so I can come home to my family. I'm enjoying my hospital hiatus right now but it will be short lived. I have to run now and prepare for who knows how long of a stay but I hope to be home soon and say thank you to you all. Bye for now!

I Love You Mom!!!

Hey Cassie,

Thanks for the update! I so hope you can get some firm answers at the next hospital. Hoping all goes well..............

:goodluck::goodluck::goodluck:

Thinking about you, :hug:
Dusty

Hey Cass or Cassie's Mom, have you learned any more about the chronic mesenteric artery ischemia? Or is that what the Saskatoon wizard is going to be concerned with? Best of luck ladies!! Update when you can .

HI Cassie, I am assuming you live in Saskatoon? I have been at the hospital in Winnipeg for lithotripsy, 3 times but hopefully not again. We have a good hospital and amazing surgeon here so hopefully I will get my appt soon. I hope you get all your answers and feeling better soon so you can go home. Your mom is awesome to keep us updated. We are looking forward to learning more about you. Thanks for sharing your update with us!!

Hey Cass: Hope all goes very well in Saskatoon!!!!

If you ever get sent to a wizard in Edmonton, stop in and we'll share a glass of...Ensure.

There is no wizard

We've been very sadly disappointed. We took her to Saskatoon Sunday, being told the wizard would meet us in emerg. Not so, apparently. Finally, three hours later, the nurse told us no way would he be showing up, but he had agreed to admit her, and she was to begin tests in the morning, so she was not to eat after midnight. The next morning, this wizard rudely told her anyone who had been as sick as long she has been wasn't likely to be diagnosed. He told her he would do some tests just to humour her GP, who he said "begged" him to see her. He even said she could stand to lose a few pounds more, since she's a hefty 90.5 lbs as of Sunday. Meanwhile, he has taken her off all pain meds and also wanted to take her off IV. I don't know if she's off it yet or not. He said she was probably just going to have to learn to live with the pain and figure out for herself what she can eat. Later, another doc came to see her and said he would try to get a gastroscopy on Thursday. With no pain meds, she said she could not wait that long. So he said he would try to get something tomorrow. She now has a gastroscopy scheduled for 11. No doubt they will see nothing because that is what they are expecting to see.
This morning I phoned the quality care people, they won't talk to me because she's an adult, so she'll have to phone them herself, and her GP says for her to keep buzzing for pain medication, take the tests and hope to make the wizard eat his words. What's making this even harder to take is that Sunday night in emerg, the doc who talked to her on behalf of the wizard asked more questions than any other doc has ever asked her and said it was pretty clear there was something rare or unusual and that they would be looking hard to find it. Yeah, right!
This is starting to sound very awful. Sorry for venting, but thank you for being out there. Knowing someone cares and believes is so important. As the Celtic saying goes, may the blessing of light be on you - light without and light within.

Dear Cass and Mom: Cannot imagine what you are going through during this disappointing time. Unbelievable. Take good care.

That sucks Cassie's Mum.....

Please keep us posted of any developments and let Cass know we are all thinking of her............:hug::hug::hug::hug::hug::hug:

Thinking of you,
Dusty

Gosh, I'm in tears. I have never been so moved by a story before.

You poor things, least you have a diagnosis now (always let's you feel a bit at peace) and are in the best place for treatment.

I'm sending thousands of good vibes to you and your family!

I feel like such a wuss, when I read stories like this! xoxoxo

Hate to hear that your daughter is having such a difficult time. What the he** is wrong with some docs these days???? It reminds me of a scene from one of my all time favorite movies, "Terms of Endearment." Shirley McClain goes into a rant at the hospital because her daughter is in pain. "Give her the God Damn pain shot." Don't be afraid to be that mom! I think docs forget, and we do too, that they work for us, not the other way around. They are not always right. Demand answers. Don't stop until you get them. And by all means, demand pain relief for your daughter.

treehugger said:

Gosh, I'm in tears. I have never been so moved by a story before.

You poor things, least you have a diagnosis now (always let's you feel a bit at peace) and are in the best place for treatment.

I'm sending thousands of good vibes to you and your family!

I feel like such a wuss, when I read stories like this! xoxoxo

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Sending the reiki your way!!

GassyCass said:

We've been very sadly disappointed. We took her to Saskatoon Sunday, being told the wizard would meet us in emerg. Not so, apparently. Finally, three hours later, the nurse told us no way would he be showing up, but he had agreed to admit her, and she was to begin tests in the morning, so she was not to eat after midnight. The next morning, this wizard rudely told her anyone who had been as sick as long she has been wasn't likely to be diagnosed. He told her he would do some tests just to humour her GP, who he said "begged" him to see her. He even said she could stand to lose a few pounds more, since she's a hefty 90.5 lbs as of Sunday. Meanwhile, he has taken her off all pain meds and also wanted to take her off IV. I don't know if she's off it yet or not. He said she was probably just going to have to learn to live with the pain and figure out for herself what she can eat. Later, another doc came to see her and said he would try to get a gastroscopy on Thursday. With no pain meds, she said she could not wait that long. So he said he would try to get something tomorrow. She now has a gastroscopy scheduled for 11. No doubt they will see nothing because that is what they are expecting to see.
This morning I phoned the quality care people, they won't talk to me because she's an adult, so she'll have to phone them herself, and her GP says for her to keep buzzing for pain medication, take the tests and hope to make the wizard eat his words. What's making this even harder to take is that Sunday night in emerg, the doc who talked to her on behalf of the wizard asked more questions than any other doc has ever asked her and said it was pretty clear there was something rare or unusual and that they would be looking hard to find it. Yeah, right!
This is starting to sound very awful. Sorry for venting, but thank you for being out there. Knowing someone cares and believes is so important. As the Celtic saying goes, may the blessing of light be on you - light without and light within.

Click to expand...

Cassie and Mom

Just heard of a program at NIH ..."Undiagnosed Disease Program"...here's a toll free number for info...don't know if this is posibility but I guess at this point it wouldn't hurt to give them a call..hope this will be in someway helpful.The number 866-444-8806....sure hope something turns to the positive for Cassie.

Jerry

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

Hiya Cassie and Mom

My God! I'm appalled! I'll tell ya what! if a doctor said that to me about one of my kids, he'd have no bollocks now!
I love that scene Julie in Terms of Endearment, and that's exactly what I'd be like! Demand some pain relief! Cassie can not be expected to just put up with this, why the hell should she?
really hope something gets sorted soon, thinking of you both during this horrible time
take care
xxxx

Hi, Cassie's mom,

You are proof that a mother knows what is best for her child, no matter how old her child is. Bless you for not taking "no" for an answer.

I hope Cassie is feeling better each day!
Tina

Hi Cassie's mom, there are alot of good doctors and bad, I have had my share of rude and not help worthy in the Canadian system. Never heard of this Wizard, doesn't sound like he will ever be of good help to Cassie. There are many specialist and you to keep seeing one till they believe her. Lose more weight??? What kind of idiot would say such a thing. Give her our love and strength, and keep fighting for her like a good mom should! Hope you get some answers soon, keep us posted!

Cass and Mom, just wondering how Cassie's doing? How did the scope go?