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07-21-2014, 08:42 PM   #31
RowdyRowdy
 
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Yeah, def peaks and valleys with Crohn's. What helps me in the valleys is knowing they won't last forever. #hope.
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07-22-2014, 04:25 AM   #32
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Today I feel exhausted and its only 10.20 am. Keep running to the toilet. Think the Crohns is coming out of remission. My hip and other joints are hurting, feel like my weight is dropping too.

The two dogs in my avatar are Jen & Alfie, both rescue dogs. They look after me when my partner is at work.
I think this support group is a really good idea. I was struggling today before partner went to work, but when he asked me if I was alright, I said I'm fine. Dont like to keep moaning. But here people understand better x
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Diagnosed Crohns in 1993, Resection same year.
Fibromyalgia
Enteropathic Enthesopathy
Migraine Sufferer
Scoliosis
IBS

A wonderful partner, 2 children, 3 step-children, 3 grandchildren and 2 dogs
07-22-2014, 05:41 AM   #33
emmaaaargh
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This thread is such a great idea! Today I'm feeling kind of frustrated. I saw my GI yesterday and all seemed okay there. Platelets down, haemoglobin in range (finally), but my CRP was up. We agreed that if it was still up by the time of my next appointment, we'd move on to 100mg of azathioprine - which I'm fine with. Also, my vitamin D level is 20, so I'm now supposed to be taking 1200mg a day instead of 200mg.

But it's just that I'm kind of stalling when it comes to filling my prescription because we've had SUCH an argument with the pharmacy lately! I'm on 75mg azathioprine and for some reason my prescription fell out of sync - so I could order more 50mg, but not any more 25mg. I thought it'd been fixed - my dad rang the GP and they were really lovely, admitted they'd messed up, promised to fix it - but then we went to the pharmacy again and they only gave us 28 tablets of the 25mg. I'm supposed to have 100! I ran out the day before yesterday and haven't been able to get to the pharmacy yet, and I'm so tired of their not ordering the right medications when they're supposed to. With any luck they won't end up having to do all this for my 'new' vitamin D.

I've waffled on long enough - I'll leave it there for now. Just had to get it all out!
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Humira 40mg fortnightly
07-22-2014, 10:51 PM   #34
afidz
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I feel...discouraged today.
I went to my GI, basically it came down to "there is nothing else I can do for you until the hernia is fixed". He isn't sure if my symptoms are because of Crohn's or the hernia, and since he can't scope me, there isn't really a way to tell. He did however order an xray of both of my hips to look at the sacro illiac joints. He said that sometimes Crohn's can effect those joints, (as well as AS) so he wants to see if they are damaged. I am eager to get those results back because I really want to start figuring out my back pain.
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
07-22-2014, 10:55 PM   #35
afidz
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I'm glad everyone likes this support group! I feel like, even if I dont get a response back, I was still able to get it out. I also like reading everyone's posts. Reminds me that we are all in this together. I hope everyone has a better day tomorrow
07-23-2014, 12:43 PM   #36
PE91
 
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Today I am depressed, all the possibilities of getting to move out onto my own are all crumbling apart. My eyes are hurting and look like a vampire or zombie. My face hurts and is so puss filed it looks like its going to pop. Yesterday my family and I joked why I couldn't get a job. Well welcome to SubWay do you seriously want me making you food. I look like I'm gonna start the apocalypse. Walmart check out "costumer starts thinking maybe I should start prepping for doomsday". Anyway I can no longer live at home. My stomach hurts and keeps growling and digesting I hate that feeling. I am on heavy antibiotics to try and help my face. And I have an appointment at ophthalmology at JPS on monday to see about fixing my eyes. I feel so stuck in place and can't move. I hope I get some positive news in a few days from some attorneys.

Take care all.
07-23-2014, 03:41 PM   #37
RowdyRowdy
 
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My ileostomy bag leaks at the worst times. It's like it waits until I'm in a very important meeting then decides to come unglued. Now, even when it's not leaking, my mind feels as though it is. Today, I told God I thought it'd be better if I was never born. (See: Book of Job, :/ ). Anyway, I'm certain this will pass. But until then, hmmmm....
07-23-2014, 06:36 PM   #38
afidz
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PE91- iritis and uvetis are common with people with IBD, so thats possible thats what is bothering your eyes. They are the same thing, the only difference is what part of your eye is inflammed. Its important to get it treated asap as inflammation causes scar tissue, and in an eye, is impossible to get rid of. I had a couple month flare last year, I was on steroid drops and a dilator for a while to clear it. Eventually, it went away but it can come back at any time.
07-23-2014, 10:52 PM   #39
Cosmojo
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Today I feel alone, I made my boyfriend stop what we were doing and go back home cause I'm just in so much pain. He is usually very understanding but today was a hard day for him too I guess. I am constantly in the bathroom and I'm at that phase in my disease that I've had no energy to keep up on my friendships so I feel like I have no one to go to.
I have a GI tomorrow which makes me hopefully, but we all know 1 appointment doesn't change much its just the start.
This is going to sound selfish but I just want to be taken care of and have someone help me out but my work is really competitive so I can't show weakness. Its lonely.
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Currently on:
wellbutrin, levothyroxin, propranolol, B12, multi vitamin, naratriptan, xanax

In the past:
Humira weekly- didn't work
Remicade every 6 weeks- had lots of side effects after being on it for 4 years
Prednisone & all steroids- I get manic episodes so I can't take
Pentasa- didn't work
Imuran- not currently using but did seem to work
MTX- stopped, my kidneys were getting lots of infections

Just trying my best to get through graduate school
07-24-2014, 12:24 PM   #40
Grumpy1
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Sad today, have to go back on prednisone. Crohn's out of control. Will gain more weight yay me! Have to see a Rhumotologist for the arthritis. Maybe able to try Humira again once I get my immune system to stop being so miserable. But tomorrow is another day and it will be better - right?
07-24-2014, 12:32 PM   #41
Lam123
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I'm in the same boat. Going through a flare, on prednisone, trying humira weekly, have to see a rheumatology dr, knees aren't great, keep getting inflamed.
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Crohns for 26 years
Previous meds: Pentasa, Imuran
Current meds:
Humira weekly
- multi vitamin and vitamin D
- B12 shots monthly
Mother of one beautiful boy and a puppy! 👪🐶Happily married to an amazing and patient man, that I call my best friend❤️I'm just living life one day at a time and trying to figure out this crazy disease! 🍀🌞⭐️
07-24-2014, 12:35 PM   #42
Grumpy1
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I'm in the same boat. Going through a flare, on prednisone, trying humira weekly, have to see a rheumatology dr, knees aren't great, keep getting inflamed.
Humira caused what they think was serum sickness or could be just because I have a really nasty immune system that isn't allowing me to take anything. I have always had issues with taking prescription drugs big time allergies and now is worse. I hope that things get better for you soon!
07-24-2014, 12:36 PM   #43
Lam123
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My crohns symptoms have improved, just the knees. Might have to try methotrexate aswell. Have u ever taken it!
07-24-2014, 12:44 PM   #44
Grumpy1
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No, started with prednisone, then Imuran which caused me to have pancreatitis and my gall bladder to become inflamed, then we tried Remicade which caused serum sickness and then Humira - now back to prednisone.
07-24-2014, 12:47 PM   #45
Lam123
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Oh ok. I'm on humira and Imuran now, but I think the Imuran isn't doing anything. Not sure. I go see my dr Aug 18, have to get bloodwork done soon. This is definitely a much different flare then what I'm used to.
Where is ur arthritis?
07-24-2014, 12:50 PM   #46
Grumpy1
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Ankles, knees, one hip and one wrist lower back - its ugly - I walk at least 3 miles a day and I'm not used to being unable to get up a go but my get up and go got up and went. Where is yours?
07-24-2014, 12:52 PM   #47
Lam123
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My knees and back. Knees are worse, they keep feeling swollen and liquid on them. I would like to get back to the gym, but not sure what exercises would not bother my knees.
07-24-2014, 12:54 PM   #48
Grumpy1
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Swimming is supposed to be good. Not sure about anything else - but if you ask somebody here will have the answers.
07-24-2014, 12:59 PM   #49
Lam123
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I think I would be able to handle the bike, because I am sitting. Not sure. I hope to be able to go for walks soon.
07-24-2014, 12:59 PM   #50
Lam123
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Feel better soon!
07-25-2014, 09:10 PM   #51
valleysangel92
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I had a nice day today, my boyfriend came to see me and we got coffee and lunch and then went to the cinema and then came back to my house to watch films and eat etc. It was the first real outing I've had since my hospital stay at the end of last month, and it went pretty well.

I'm suffering for it now though, it's 3 am and everyone is asleep but me ( mum dad and boyfriend) . My tummy feels like it's got a knife in it. I've had paracetamol (Tylenol) and tramadol and buscopan and I've got a heat pad on, but nothing is making much difference. My tummy is pretty bloated too. Living in a small village makes things a lot more effort, it takes me 45 mins on a bus to get my boyfriend from the train station, then another 20-30 min bus to the nearest cinema, and then the same the way back to my house, and I live half way up a mountain, so have to use steep steps to get to and from the bus stop. I feel I'd be able to get out so much more if I lived somewhere flatter or with more around. Here it's basically walk in the mountains or go to the small pub/ hotel, otherwise you have to get a bus somewhere. Which is fine if you have the money and strength. But I don't have much of either right now. I feel like I'm 3 x my age.

But, I did have a good day, and it was nice that me and my boyfriend got to be a couple and have a date and not just sit at home, we don't get to do that sort of thing very often, partly because we live 50 miles apart, partly because I'm so sick again right now and partly because of the amineties around me. So all in all I'm in a lot of pain and very tired. But mentally good.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
07-25-2014, 09:22 PM   #52
dave13
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I had my post-op visit this week for my fistulotomy and setons.Dr. said they were doing well.I thought I had five setons,but found out he put in three.That's good news.

I start remicade in five days.I'm not looking forward to it.

I did go for a motorcycle ride for the first time since having setons.I was a bit tender from the surgery still,but it was a fun ride.
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07-25-2014, 09:45 PM   #53
lenny
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Today was a pretty good day for my son. He had a decent amound of energy and he didn't have pain in the bathroom.

Which would be fine if I were talking about my grandfather, but I am talking about a 17 year old. yippy.
07-26-2014, 03:05 PM   #54
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Just jumping on here to add my small bit of advise. I see some of you do keep journals..I find this tremendously helpful. Been doing it for about 10 years ..not always faithfully.. sometimes I get lazy . But always come back. We can go back and read how sick we were ..how hopeless we felt each and every time this monster decides to visit. Especially when it completely ruins holidays time after time. We can see all the meds. we tried and how long they took to help ..or not. They say the sun always comes out after the storm. Some storms are sure dilly's though aren't they ! We're all a bunch of "Storm Troopers" I'd say ! Pun intended... Ha Ha
07-26-2014, 03:45 PM   #55
Lam123
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Hi everyone! I am feeling great today! Been going through a flare since April, today is the first day I am feeling well enough to go to the gym. Felt great. Exercise always helps me in so many ways. Not sure how I will feel tomorrow, but today has been a great day. I also started juicing again today.
07-28-2014, 06:47 PM   #56
afidz
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Worry about tomorrow tomorrow, thats all we can do.
I feel awful today. Between Crohn's, my period, and the hernia, I just want to hide under the covers with all my pets around me. My lower back/ right hip have been killing me at night, and I have a puppy that thinks its fun to get up early so needless to say I am not getting much sleep. But good news, I finally was able to make an appointment with a rheumy (still have to wait for 6 weeks). Around the same time as the rheumy, I am going to a weight loss clinic that my GI approved. I am hoping to loose the weight I need to be able to go forward with surgery. The rest of the year is going to be very challenging to say the least, but I feel like 2014 is the year that I finally get my health in line.
07-29-2014, 06:10 AM   #57
Lam123
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What weight loss clinic are you going to?
07-29-2014, 09:03 AM   #58
Gram214
 
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Hi all..must be hip pain season. My R one has been horrid now for over a week. Just had my Remi and even started a round of prednisone. My tummy is misbehaving as well seems like it doesn't want to conform to the regimine. I have a call in to my GI. Iam not seeing a Reumy at the time. Have in the past and found my GP is just as thorugh and can do as much for me at half the price and no 6 month waiting list.
Always something ...don't you just love how if one thing is feeling good another won't be ?
07-29-2014, 03:04 PM   #59
Grumpy1
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Hi all; Feeling better today - prednisone is kicking in. I see my reumy in November but have booked myself a vacation to Oregon in October so am looking forward to it. Now if I can just convince my body to behave..... I hope that everyone feels better soon!
07-29-2014, 05:11 PM   #60
Ali29
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Bad tummy Sunday through today - cramping, diarrhea, nausea, and of course pain (all worse than normal).

It was been a rough week, my father in law passed away Wednesday after a long battle with liver cancer. My daughter drove us to San Antonio for the funeral (hubby had been there about a week because I haven't been able to travel & he has had to be there many times since January without me - which he and his family totally understood). I took all my meds to the best that I could (and didn't eat near drive time) so we could make the trip without an accident in the car - many stops there and back but we made it (much longer journey). Thank the Lord I was able to be there.

I think the stress of the death and funeral made my symptoms twice as bad when we returned home. Trying to de-stress as much as I can right now.
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
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