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06-11-2011, 09:57 AM   #361
Lisa
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my mini-vent.....last night my hubby and I were having 'relations' (I was actualkly still AWAKE at 11pm LOL)......well - there was a 'slip' and I hurt myself! now it hurts to pee dang it!....abstinence for a few days I guess until things heal.....GGGRRRRR!!!!!!!!!!!!!
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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.
06-11-2011, 01:29 PM   #362
DougUte
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I am hoping that everybody is feeling better. Can you tell me a little more about sleep apnea, Doug? My husband's doctor is suspecting that he might have that. I have many questions. I probably should google it.
Andi

I don't know that much about it either. I googled it last night. (mayoclinic.com) Sleep Apnea is when somebody stops breathing while they are asleep. They finally wake up gasping for air. Sounds scary.

There are 2 kinds, obstructive sleep apnea - when something in the respiratory tract actually blocks your breathing. This is 95% of all cases. The other is central sleep apnea - in which your brain just stops sending signals to the muscles that control your breathing. This is the other 5% of all cases. I apparently am one of the special 5%. By the way, the doctor who originally told me to get the sleep study done.... My G.I. doc. He was concerned about my energy level not being good months after my surgery.
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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
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
06-11-2011, 09:29 PM   #363
tayandky
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my vent is once in 6 years have I asked anyone to watch my two girls so my hubby and I can take a get-a-way for 2 days! He asked his brother and his wife but of course they have their head in their ass and won't help us!! Last year they stayed with us because they were splitting up and I did everything for her and she never did a damn thing! Not even watch my kids. Also I even watched her kids many times before over night and all day. They are my niece and nephew...it's family! Family helps family! Well not his brother! So now I have to ask friends which I feel bad. All my friends have stepped up and have said they girls can stay with them. I feel bad asking but I wish family would step up! GRR! Its 2 days seriously?? Can't handle 2 kids?? So we shall see what happens. I would love to have a mini get a way with my hubby.
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Surgeries:
NEC- 5/1984 had all my large intestine taken out and have 84cm left of small intestine
Ileostomy-1984-1989
feeding tube-1984-1989
SBS- 5/1984
Crohn's- 5/2011

Vitamins:
Iron x2 a day
vitamin c x2 day
daily vitamin x1 day
B12 injections 1-3 months
Budesonide 3x a day
liquid potassium 2 tablets a day

-Athena
06-11-2011, 09:33 PM   #364
Dexky
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Damn Paso....what the....how the...a slip and it hurts to pee!!! I really don't need to know but if you're brave enough to post that^^^^, I'm brave enough to ask anyway!

Doug, I'm assuming a breathing mask won't be enough to fix your SA. I have an old college friend who has been sleeping with one since his early twenties. He would never go back to w/o it!!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-11-2011, 09:38 PM   #365
rygon
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enjoy your get together i find friends are much better than relatives, and i will tell relatives when im peeved off with them as well (why shouldnt i)

I have girl problems, ok one day next day they are gits.. aghh sod them lol
06-11-2011, 11:54 PM   #366
DustyKat
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Damn Paso....what the....how the...a slip and it hurts to pee!!! I really don't need to know but if you're brave enough to post that^^^^, I'm brave enough to ask anyway!
Holy cow Dex!!! I think I am going to have to send you a PM explaining!!!

Dusty. xxx
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06-12-2011, 12:20 AM   #367
Crohn's Mom
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LMFAO DUSTY !! hahahahahhahaha (sorry Dex...LOL)
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
06-12-2011, 10:05 AM   #368
Dexky
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Oh, I see!! But Dusty, I'm pretty sure not everyone dives off the bed on their mate wearing leopard print negligee!! Still, thanks for the image!!
06-12-2011, 10:12 AM   #369
StarGirrrrl
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my vent is once in 6 years have I asked anyone to watch my two girls so my hubby and I can take a get-a-way for 2 days! He asked his brother and his wife but of course they have their head in their ass and won't help us!! Last year they stayed with us because they were splitting up and I did everything for her and she never did a damn thing! Not even watch my kids. Also I even watched her kids many times before over night and all day. They are my niece and nephew...it's family! Family helps family! Well not his brother! So now I have to ask friends which I feel bad. All my friends have stepped up and have said they girls can stay with them. I feel bad asking but I wish family would step up! GRR! Its 2 days seriously?? Can't handle 2 kids?? So we shall see what happens. I would love to have a mini get a way with my hubby.
Well when they want a favour next you know what to say...
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
06-12-2011, 11:29 AM   #370
SarahAnne
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I know it may seem like such a minor thing, but I am really tiny and I have lost a LOT of weight dealing with this stricture.

It's summertime, the kids are out of school and we live a mile from the beach. I am so exhausted all of the time but I'm determined to have some fun even if it kills me. I've lost so much weight since last year that I've been searching for a new bathing suit...I have been crying non-stop...I hate clothes shopping when I am sick. I bought a bathing suit yesterday, it is a girls size 16. I'm 34 years old, how embarrassing.
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Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
06-12-2011, 11:41 AM   #371
Lisa
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@Sarah...wear it with PRIDE!!!.....to hell with everyone else, a few years back (ok, a lot of years now!) I went to Fla to visit a (male) friend for a long weekend.....I was probably around 100lbs and I'm 5'5.....we went to the beach, I have some god-awful pictures of myself too...but you know what, I had FUN!.....

@Dexky - well...umm.....let's just say I don't EVER want to repeat this!!!!!.....

With the way things have been going around here, with my friends' son being deathly ill, my Mom's best friend visiting and knowing it is most probably her last visit (stage 4 cancer).....I needed to post something that would get some responses to make me laugh!!!
06-12-2011, 12:59 PM   #372
Mountaingem
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I know it may seem like such a minor thing, but I am really tiny and I have lost a LOT of weight dealing with this stricture.

It's summertime, the kids are out of school and we live a mile from the beach. I am so exhausted all of the time but I'm determined to have some fun even if it kills me. I've lost so much weight since last year that I've been searching for a new bathing suit...I have been crying non-stop...I hate clothes shopping when I am sick. I bought a bathing suit yesterday, it is a girls size 16. I'm 34 years old, how embarrassing.
After all you've been through, you deserve some fun! Go to the beach and ROCK that bathing suit Girl!
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Jeannette

I WILL STAY STRONG
I WILL FIGHT
I WILL WIN


Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
06-12-2011, 10:31 PM   #373
AndiGirl
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It was Scott's day off, but he decided to go shooting with a couple of buddies. I wanted to do something together. The upside, he did come home with a canoe. One of his friends from work is getting a divorce and is getting rid of things. Our home is right in front of the Campbell Creek. It's literally in our back yard. I going to make him take me canoeing.
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Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Multivitamin
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
06-13-2011, 08:30 AM   #374
SarahAnne
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Andi, you are so lucky! I would kill for a canoe or kayak around here. Maybe just the relaxation that you need!
06-14-2011, 04:47 PM   #375
Cat-a-Tonic
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Andi, have fun with that canoe! Hubby and I actually have a 2-person kayak, but we haven't taken it out since I've been ill. We did a lot of kayaking back in the summer of 2009 (I got ill in Oct 09) and that was really fun. I told hubby the other day that we really should take the kayak out again sometime soon. I've decided to be brave and hope that I won't need a bathroom while we're out kayaking (and I'll take extra Lomotil and Zofran with me, ha ha).

My mini-vent today is that my hip freaking HURTS. My arthritis went from a dull ache to a sharp poking pain yesterday. It seems worse when I am sitting down and it's actually not terrible when I'm walking, so I'm going to attempt to walk the dog tonight. We live right by the dog park, and there's a lady who also lives in our neighborhood who owns a tiny corgi puppy that looks just like a small version of my own corgi! So I really want to see this puppy again, and the lady said she takes her puppy to the park most evenings. So, this will be my reward - if I can drag my sorry butt and sore hip to the dog park, hopefully I get to see my dog play with her adorable tiny doppelganger.
06-15-2011, 12:20 AM   #376
littlemissh
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Kayaking must be in the air. Our friends have just bought a 2 person inflatable canoe. They have said we can borrow it whenever we want ..even for our summer camping trip where we are by a river...let's hope my insides are behaving themselves by then.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
06-15-2011, 07:53 AM   #377
Lisa
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My head hurts this morning!.....started augmentin yesterday, this morning feel nauseated a bit, took some headache meds (not really working yet - might take another soon!)...have a achyfeeling in my chest- kind of like heartburn right behind my breastbone.......

on a good note, got my mammogram results back with NO abnormalities found!
06-15-2011, 07:57 AM   #378
SarahAnne
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Threw up twice yesterday, second time it was into the trash can as I was sitting on the toilet. I am going to have to call my GI soon if this keeps up, no way will I make it to my June 27 appointment. I know he put me on pred for inflammation and partly to help me gain weight, but I have lost weight since I saw him. I told him I was throwing everything up, did he think I was exaggerating?
06-15-2011, 11:08 AM   #379
Mountaingem
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Please go to emergency. The hospital can run tests and get you some relief.
06-15-2011, 10:31 PM   #380
AndiGirl
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I can't wait to try out the canoe. I'm suffering a case of nausea from HECK right now.
06-16-2011, 09:43 AM   #381
Cat-a-Tonic
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Andi, I feel for you. I've gradually been feeling a little worse every day, afraid that I'm slipping towards a flare. Woke up this morning with abdo pains, nausea, and weakness. Stupidly I went to work anyway but if this gets any worse I'll be headed home sick. The good news is that I already have a GI appointment scheduled for Monday morning.
06-16-2011, 02:43 PM   #382
Lisa
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Good luck Cat!!!!!
06-17-2011, 03:51 PM   #383
dreamintwilight
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This is more than just a mini vent, but I don't really want to go into detail about it. I'm going through some upsetting family problems and am really sad about it.
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Marisa
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
Biotin
Allegra
06-17-2011, 03:57 PM   #384
Cat-a-Tonic
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Sorry to hear that, Marisa. Try not to let it get you too down (easier said than done I'm sure), you know what stress does to our insides. I hope the problems get resolved soon.

On the plus side, I feel better today! My hip is the only thing that still hurts. I'm hobbling around like an old lady. My husband bought a cane years ago because he got awful sunburn on his feet to the point where he could barely walk. I think I might have to ask him to dig out his cane soon so that I can use it! Stupid arthritis. I don't know what to do - I did the exercises my physical therapist showed me, and for a little while it felt better. Then it felt much worse, so I stopped the exercises, and for another little while I felt okay again. But now I'm back to bad again. To exercise or not to exercise?? I wish my body would just pick one already!
06-17-2011, 04:01 PM   #385
Crohn's Mom
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Sorry you're having such a bad day Marisa
I hope things turn around for the better real soon...family problems are so stressful!

hugs ,
~T~
06-17-2011, 04:22 PM   #386
dreamintwilight
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Yeah, unfortunately, I don't think these problems are going to go away anytime soon. They've been around all of my life, but something life altering is brewing... I really do appreciate the kind words and support though.

I'm glad you're feeling better today, Cat.
06-17-2011, 04:26 PM   #387
Mountaingem
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Sending Hugs Marisa!
06-17-2011, 09:57 PM   #388
AndiGirl
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Here's a hug for you Marisssa. I know that family problems can be the worst kind; it can really stab you in the heart. I've been there. Be kind to yourself.
06-18-2011, 06:31 PM   #389
Cat-a-Tonic
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My mini-vent today is that I feel fat. I bought a pair of too-big pants on sale a couple years ago and put them aside so that I could take them in (I sew, so buying ill-fitting clothes isn't a catastrophe - I have altered many clothes). But they got shuffled to the bottom of my sewing pile and I never took them in. I was going through my sewing pile today and saw these pants - it's probably been 3+ years since I bought them. I'm sure I got them before I became ill. And, even though I've lost some weight lately, my stomach has been bloated, so much so that these pants fit perfectly when I tried them on again today. If anything, they're a little tight! Makes me feel fat that my once too-big pants are now on the verge of being too small.
06-18-2011, 06:59 PM   #390
Mountaingem
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Me, too Cat-been on Weight Watchers and lost 15 lb, but so bloated I look pregnant and nothing fits! Bless my neighbor-she brought me over a pair of maternity pants-LOVE them!!
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