05-17-2012, 10:10 AM   #961
Lisa
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Until next Wednesday. I need chocolate chip cookie dough ice cream....
DEF GO FOR IT!!!...Hope everything comes out clear!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
05-17-2012, 10:11 AM   #962
Lisa
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My daughter gave me her cold......BP still hasn't come down quite enough (hanging around the 130s' lately - going to get it checked now).....slept like crap....had to hit the bathroom 2x before heading out the door and it wasn't pretty.....

and to top it off, I wore the 'wrong' under-drawers and have one hell of a wedgie!!!!!!!!!

Last edited by Lisa; 05-17-2012 at 10:12 AM. Reason: can't type/spell today! lol
05-17-2012, 11:07 AM   #963
LindaS
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Until next Wednesday. I need chocolate chip cookie dough ice cream....
I hope by now you've heard good news!
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05-17-2012, 11:19 AM   #964
Mountaingem
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Hi Linda, no nothing yet, it's driving me crazy! I'll update once I hear something. Thank you for the shout out
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Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
05-19-2012, 10:07 AM   #965
VenomousDuck
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A quick shout out to my [email protected]$$ GI, who kept pushing me to my primary care and ignoring/not working on the fact i have had constant Crohn's symptoms for 9 months.

And to the er that never admitted me, even after 5 visits, never tried to solve my problem.

It took threats of hurting myself and placement in a psych/med until to get the medical part of my problems solved.....so a big thank you to St Mary's in MI.

And a big F you to the Metro health system in Grand Rapids MI.

End rant.
05-19-2012, 03:57 PM   #966
Goldfish
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A quick shout out to my [email protected]$$ GI, who kept pushing me to my primary care and ignoring/not working on the fact i have had constant Crohn's symptoms for 9 months.

And to the er that never admitted me, even after 5 visits, never tried to solve my problem.

It took threats of hurting myself and placement in a psych/med until to get the medical part of my problems solved.....so a big thank you to St Mary's in MI.

And a big F you to the Metro health system in Grand Rapids MI.

End rant.
God that's awful. What a nightmare. I hope they are taking you seriously now and you are getting some well deserved looking after.
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05-19-2012, 05:16 PM   #967
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More blood tests and no answers! GI appointment is going to be sometime, but who the hell knows when.

ESR was zero. Literally zero. Doctor had a bit of a weird face when she told me that one but said while it's not normal, but it's not necessarily 'abnormal' given all my other normal tests. She started bringing up IBS, but I know it's not IBS.

She's trying. But no answers is trying my patience.

I'm considering just eating everything that makes me sick and putting my nose to the grindstone until I get an answer, because I know there's one to be found.
05-20-2012, 08:14 AM   #968
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Chin up Gulk. Very frustrating but as you said at least she is trying. Hope you are ok.
05-20-2012, 09:16 AM   #969
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Somehow managed to pop a blood vessel in my PALM yesterday!!!!!! And pinched my hand leaving a mark...and the same hand is stiff, stiff, stiff!!!!
05-20-2012, 03:23 PM   #970
Mountaingem
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Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!
05-20-2012, 03:30 PM   #971
Goldfish
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Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!
Thank Goodness. Dont wait to be paid , start charging!
05-20-2012, 03:56 PM   #972
Gculk
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Chin up Gulk. Very frustrating but as you said at least she is trying. Hope you are ok.
I'm doing good. I'm not severely ill like some folks, but the fact is that I'm often in considerable pain, and KNOW something is wrong with me, but nothing is showing up, nothing showed up in the past, on anything, including colonoscope/followthrough/sigmoid/ct scan.

I know that there's more than a functional disorder (oftentimes during my first flare, for a month or so, I would feel tearing pains in my right hand side, then the next day pass a clot the exact same size and shape as the pain I was having). It was handwaved away as hemmorhoids. I suppose that it healed prior to my scope and small bowel followthrough because nothing showed up, and it was swept under the rug by the docs.

This time again, nothing showing up on blood, and the doctor doesn't think anything will show up on colonoscopy/followthrough. It really is tempting to just push myself until something bad happens and let them sort it out, because I'm going a bit nuts!
05-20-2012, 04:22 PM   #973
LindaS
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Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!
I'm glad you posted, I was starting to get worried. Sorry you still don't have a firm diagnosis, but I'm so glad it isn't lymphoma!
05-20-2012, 04:28 PM   #974
DougUte
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Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!
Jeanette, I understand your frustration, but I so happy it is not lymphoma!
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
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05-20-2012, 07:33 PM   #975
Mountaingem
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Thanks guys for the good wishes!
05-20-2012, 08:40 PM   #976
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Palm feels better, but my hand feels very stiff. Plus I got a bit of a sunburn working outside ........
05-21-2012, 08:47 AM   #977
Goldfish
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It really is tempting to just push myself until something bad happens and let them sort it out, because I'm going a bit nuts![/QUOTE]

I know what you mean but please dont do it. I'd rather hear that your frustrated than to hear something awful had happened. Keep us posted and take care.
05-21-2012, 03:12 PM   #978
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My mini-vent is that I just wish things would calm down already. It's been one thing after the other for a couple weeks now. I'm still in remission thank goodness, but I've still taken a bit of a beating health-wise. First I had a bout of food poisoning (hubby didn't thaw some ground turkey properly - he got a bit ill too and he will be thawing the proper safe way in the refrigerator from now on and not just leaving it in the sink and forgetting about it!). Then my GERD decided to act up for no discernable reason. And then I got rear-ended and got whiplash! I'm feeling mostly better now, the next hurdle will be getting my car estimated (there appears to be only very minor bumper damage but I am a bit afraid that there might be frame damage that I'm not seeing) and then I'll probably get to fight with the other guy's insurance company to get them to cover my medical bills from the whiplash. The accident wasn't my fault at all but I just know I'm in for more stress due to this situation. So yeah, food poisoning, GERD, whiplash, possible car issues and stress. I just want everything to calm down for awhile now - is that so much to ask???
05-21-2012, 05:03 PM   #979
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I'm currently in bed for the second day. Last night I had a terrible BM it was so painful that I was screaming out loud in tears through it. Today I cant even get out of bed on my own cause I'm so weak and dizzy. I'm currently on Pentasa which is doing nothing and 2 to 3 months till I'm financially able to be on Remicade. My best friend was supposed to drop by so I wouldnt feel so lonely but she didnt as all my friends currently acting if I'm not going out with them, they hardly remember me. I don't know how much longer I will be able to go on.
05-21-2012, 08:42 PM   #980
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Nancy, hope you feel better soon. I am 26 years old and I also was on Pentasa when I was in high school from about age 16-18 and unfortunately, it did NOTHING for me either. I had surgery when I was 18 to remove 6 inches of small intestine. Felt great for about 3-4 years after surgery but when I was about 22 I started getting flares that would occur every few months. Up until now it's been manageable because my flares only happened every few months and each time they only lasted about 1-2 days. The last 6 months has been the worst my Crohn's has been since before I had surgery 8 years ago. I really don't get why it has gotten so bad. I have been on Entocort for the last 3 years but it basically has done nothing for me. I have also had a lot of days like you where I cant get out of bad and don't want to because the pain is so excruciating. What a sickening disease!!!
05-21-2012, 08:58 PM   #981
Gculk
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I know what you mean but please dont do it. I'd rather hear that your frustrated than to hear something awful had happened. Keep us posted and take care.
Gah, if I sit around on my arse waiting for it to get worse before I get tests, well then if there's something going on I'm getting close to the point where I get taken seriously for a real bad reason. That's how it's seeming it'll be too, cause my doc doesn't think anything will show up, and the GI I am going to see never thought it was even IBS. I'd rather just not rest whenever the pain comes up, keep going as I do without pain, and have the pain for a simple reason like that, then real cumulative damage.
05-22-2012, 04:54 PM   #982
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Nancy, hope you feel better soon. I am 26 years old and I also was on Pentasa when I was in high school from about age 16-18 and unfortunately, it did NOTHING for me either. I had surgery when I was 18 to remove 6 inches of small intestine. Felt great for about 3-4 years after surgery but when I was about 22 I started getting flares that would occur every few months. Up until now it's been manageable because my flares only happened every few months and each time they only lasted about 1-2 days. The last 6 months has been the worst my Crohn's has been since before I had surgery 8 years ago. I really don't get why it has gotten so bad. I have been on Entocort for the last 3 years but it basically has done nothing for me. I have also had a lot of days like you where I cant get out of bad and don't want to because the pain is so excruciating. What a sickening disease!!!
Thank you for sharing your story, this disease is horrible you can never predict when it will give you some peace or when it decide to act up again, I only had two months of semi remission last year. Did your doctor suggest something other than Entocort? I couldn't go on it for a long time I had terrible reactions to it. If the GI isn't helping beyond Entocort, find another GI, I find it completely unfair that we have to deal with this disease and unhelpful doctors in the same time. I'm still in bed and its 36 Celsius outside and yet I'm really cold. I have my doctor appointment tomorrow and honestly I don't know how I will make it to the clinic, its very close to where I live but still, hopefully I will find someone to walk me to it. I just wish I get better news tomorrow.
05-22-2012, 10:01 PM   #983
ace2848
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Hopefully you are able to make it to your appointment so you can try to get some answers and hopefully some pain relief. I am currently weening off of the Entocort. It has done basically nothing for me the entire time I have been on it. It is the only medication I have taken since surgery besides Prednisone from time to time if I was having a bad flare. I have become pretty skeptical when it comes to any kind of pills really making my Crohns feel better. It seems the disease itself can become such a beast, medications may only go so far in truly getting into remission. Good luck with your appointment!
05-23-2012, 12:13 AM   #984
Mountaingem
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Oh my God I came home to a HUGE FREAKY FLYING COCKROACH sitting on my back banister. Two swats with a broom and two drownings with Raid barely fazed it, cat finally took it out. Now I have to move.
05-23-2012, 10:46 AM   #985
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Oh my God I came home to a HUGE FREAKY FLYING COCKROACH sitting on my back banister. Two swats with a broom and two drownings with Raid barely fazed it, cat finally took it out. Now I have to move.
You made me laugh out loud That's why I love cats I have 8 and they never let any kind of bug inside the house and they are really sweet
05-23-2012, 10:53 AM   #986
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Hopefully you are able to make it to your appointment so you can try to get some answers and hopefully some pain relief. I am currently weening off of the Entocort. It has done basically nothing for me the entire time I have been on it. It is the only medication I have taken since surgery besides Prednisone from time to time if I was having a bad flare. I have become pretty skeptical when it comes to any kind of pills really making my Crohns feel better. It seems the disease itself can become such a beast, medications may only go so far in truly getting into remission. Good luck with your appointment!
I wanted to update you about what happened at the doctor's appointment. Thankfully my husband came back from work early and he helped me to get there. Doctor suggested Imuran till I finance Remicade. He suggested a surgeon consultation, still not sure. I will do some blood work and go back to him. I don't think as well there's anything they can do to control Crohn's it's more of a trial and error of each GI. I asked the doctor after he said that he want to control my symptoms, what about my colon? he just looked puzzled
05-24-2012, 12:47 PM   #987
Lisa
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Not sure what the heck I got into - but day before yesterday I noticed a spot on my ankle that was bugging me - not really itching...but bugging me...took a closer look, and found blisters!.....no real itch (like poison ivy would have) - and I had some blisters along the red area....attached a picture (don't mind the hairy leg lol).....still red today and slightly painful...little blisters - the bigest one I popped and covered before I ripped it open.....

Does this look like poison ivy to you guys?

aarrgghh.....of course now that I took a new picture of it I will be thinking about it....
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File Type: jpg IMG-20120524-00930.jpg (33.4 KB, 36 views)
05-24-2012, 01:51 PM   #988
Mountaingem
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Oh paso...looks like shingles honey! My aunt and grandma get them. Does it hurt?

Hope I'm wrong, please go get it checked and keep us updated.
05-24-2012, 06:15 PM   #989
Lisa
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Don't tell me THAT Mountaingem!!!!! I only have the one spot- although it has gotten worse and I think a few new, small blisters have popped up......of course on a holiday weekend!!!!!

Now I need to do some research on shingles.....
05-25-2012, 06:27 PM   #990
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It will drive you mad worrying about it Pasobuf. Can you see anyone about it? My dad had shingles but no real marks, maybe a rash but not blisters but if you touched his head you would swear you had hit him with a bat or something he screeched so much. Keep photographing it until you can get it looked at. At least that way you have a kind of diary to show how it progressed. Not much helped i'm afraid but hope you get it sorted.
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