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04-15-2014, 03:49 PM   #1
CrohnsNewbie2
 
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New to Crohn's

Hi. I'm 26 years old and I was just recently diagnosed with crohn's disease. I am having a really hard time. I've had stomach issues for about 14 years. And all the time doctors would say it was an 'upset stomach' or IBS. Within the last 2 years I have been sick to my stomach, unable to eat, and just plain unhappy. Right now, my day is very off. My joints are achy and I couldn't even get out of bed. My sleep is being affected and the treatment seems to be going nowhere. I have an MRI tomorrow so I'm hoping some of the inflammation went down. I'm in such a bad mood today I don't know what to do anymore...no social life just work...and being uncomfortable Any one have any advice?
04-15-2014, 04:36 PM   #2
mdd
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Hi! Wecome ! You are in the right place. Its hard to take in. You will have good , ok, not so good days. Talking here can help. We do not judge. I take one day at a time. Ive had cd for over twenty years. What meds are you on? That can upset your body! Take care ! Maria
04-15-2014, 04:44 PM   #3
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If your treatment is going nowhere you can talk to your GI about increasing your Prednisone/Entocort dose and escalating to a more powerful drug to keep you in remission.
04-15-2014, 04:46 PM   #4
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Hi Maria! My doctor prescribed me prednisone. I feel achy most of the time and get some stomach pains. I try to eat as much as possible when taking the medication in the morning. I thinking I'm losing more weight too...which I'm not too happy about.
04-15-2014, 04:47 PM   #5
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If your treatment is going nowhere you can talk to your GI about increasing your Prednisone/Entocort dose and escalating to a more powerful drug to keep you in remission.
Hi Orchid. Yeah I'm going for an MRI tomorrow to see if the inflammation went down at all. It just feels like this treatment is not working...Is it normal to feel really bad before getting any better? I just want to feel like myself again!
04-15-2014, 04:57 PM   #6
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Prednisone has one of the nastiest side effect lists you'll ever see, so it's quite possible to feel worse on it than you did before treatment but it's still an important drug for getting better.
04-15-2014, 06:05 PM   #7
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Prednisone has one of the nastiest side effect lists you'll ever see, so it's quite possible to feel worse on it than you did before treatment but it's still an important drug for getting better.
Good luck with the testing! Prednisone works wonders but I gain a lot of weight quickly on it. Not to mention that it does horrible things to my mood. Hopefully it gets you eating and feeling at least a little better.

04-15-2014, 07:18 PM   #8
Allison M
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Good luck, Newbie2! I hope you feel better soon! That's a long time to feel bad.
Allison
__________________
Diagnosed December 2013
Partial gastrectomy Jan 2012
Cholecystectomy June 2012
Rectal Prolapse Feb 2013 with repair and removal
Pancolitis multiple times before diagnosis
Stricture and resection after prolapse May 2013
Current Meds: Prednisone, probiotics, 2 b/p meds, MV, Zoloft
Past meds: Prednisone, Flagyll and antibiotics (?)

[/SIGPIC]
04-16-2014, 07:24 AM   #9
mdd
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How was your MRI? What did it say? Let us know! We are here for you! I was on prednisone and my dr. Weed me off fast. They could lower it . What you need to do is ask! Your dr. That way you will see if the dr. Is on your side! Some will not listen to you . Its your body!
04-16-2014, 03:53 PM   #10
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Thank you mallowpufft, Allison, and mdd!

MRI was a little nerve-wracking. The nurses were very nice but it was a bit of an uncomfortable experience. They had me drink that stuff and I had to go to the bathroom a lot. I had an IV this morning and also an injection for when they were doing the MRI. I went to work after which I probably shouldn't have. I'm still at work now and I don't feel like I can do a lot. The results are going to my doctor so hopefully I get a call tomorrow.

I'm so happy to have found this group my friends don't really understand what is going on and my fiance (he's amazing) is getting a lot of my anger and frustration. I just feel so crappy lately.
04-16-2014, 07:05 PM   #11
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Please make sure you communicate with your doctor. I waited too long to say anything and ended up in the hospital for 2 weeks and that is no fun at all. So if you don't feel better after a few days of taking a med please call them. I wish someone had told me that when i was starting my first round of meds. Especially if you are going to the bathroom a lot, for me it was 15+ times a day in some cases. Dehydration/malnutrition is no joke. Once you find the right medications you will feel a million times better. I didn't know how bad off i was until i got better. Hopefully the same will happen for you!
04-17-2014, 12:02 AM   #12
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It's troubling, especially at the start. There are lots of uncomfortable tests. When I first got my diagnosis I was anxious even about having blood drawn. Now I don't bat an eyelash at it, it's happened so much. Make sure you find a GI you like and you're going to need to be on top of your health insurance situation. I deal with insurance problems almost twice as much as I deal with disease problems.
04-17-2014, 04:46 AM   #13
mdd
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Thank you mallowpufft, Allison, and mdd!

MRI was a little nerve-wracking. The nurses were very nice but it was a bit of an uncomfortable experience. They had me drink that stuff and I had to go to the bathroom a lot. I had an IV this morning and also an injection for when they were doing the MRI. I went to work after which I probably shouldn't have. I'm still at work now and I don't feel like I can do a lot. The results are going to my doctor so hopefully I get a call tomorrow.

I'm so happy to have found this group my friends don't really understand what is going on and my fiance (he's amazing) is getting a lot of my anger and frustration. I just feel so crappy lately.
Good to hear you got though the MRI. You will have more so now you know what to expect! Rest is best after the test. I get exhalted after the test, and go home and rest. You will feel weak its ok. Tired. Its part of it! You will feel strong too. Friends! Well you will find out who are yourl real frends. Thank God you have your fiancé , keep a eye on him they tend to take alot in. Its riugh for them to! Its ok to cry i still do at times, depressed also, at times i need to get it out. Feel releaved . Im here let us know what the dr. Report sayes Maria
04-17-2014, 11:26 AM   #14
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Thanks Chadlu and jumpingjacks! I'm going to contact the doctor on my break to find out the results and the next steps. The only difference I'm noticing with the medication I'm on now is weight loss. I am really achy and I get a hollow weird feeling sometimes near my stomach. Right now my stomach is having some pain which is weird...I'm trying to not get anxious about it but it's hard to work when I keep having to get up to go to the bathroom or when the pain just suddenly hits me.

Thanks mdd! I definitely need rest...I am a zombie at this point it's so bad. Thank goodness for my fiance he is like superman. He has been doing his best to get more information and he is wicked supportive. I want to get him something or do something special just to say thank you for everything he has done. I get upset a lot and I don't mean to but it's so hard at times. After I let it out though I feel much better. I sometimes get that helpless feeling which sucks. You've been awesome!! Thank you I hope you are doing well!!
04-17-2014, 01:29 PM   #15
mdd
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Thanks Chadlu and jumpingjacks! I'm going to contact the doctor on my break to find out the results and the next steps. The only difference I'm noticing with the medication I'm on now is weight loss. I am really achy and I get a hollow weird feeling sometimes near my stomach. Right now my stomach is having some pain which is weird...I'm trying to not get anxious about it but it's hard to work when I keep having to get up to go to the bathroom or when the pain just suddenly hits me.

Thanks mdd! I definitely need rest...I am a zombie at this point it's so bad. Thank goodness for my fiance he is like superman. He has been doing his best to get more information and he is wicked supportive. I want to get him something or do something special just to say thank you for everything he has done. I get upset a lot and I don't mean to but it's so hard at times. After I let it out though I feel much better. I sometimes get that helpless feeling which sucks. You've been awesome!! Thank you I hope you are doing well!!
Thank you im doing ok! My husband likes that word. Ok ! It helps him know im ok. He can tell in my voice whats up. Your fiance will notice that for you. I still cry. My family knows i need to let it go. And i feel better. Ill do it in tne hosptial, and nurses come and want to know whats up! And my husband will tell them shes ok shes letting it out shes over whelmed ! Who cares what people think!!! Keep in touch , ask questions lots of us know some thing remember your not alone!!! Love Maria!
04-17-2014, 03:02 PM   #16
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Thank you im doing ok! My husband likes that word. Ok ! It helps him know im ok. He can tell in my voice whats up. Your fiance will notice that for you. I still cry. My family knows i need to let it go. And i feel better. Ill do it in tne hosptial, and nurses come and want to know whats up! And my husband will tell them shes ok shes letting it out shes over whelmed ! Who cares what people think!!! Keep in touch , ask questions lots of us know some thing remember your not alone!!! Love Maria!
I can't tell you how happy I am that I found this forum. It's great to know that I'm not alone. My fiance worries about me constantly so this has put him on edge a little...but we are getting through it and getting stronger. I will definitely continuing posting...I hope I don't become a pain Thank you soooo much! xo Bess
04-17-2014, 03:13 PM   #17
mdd
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One day at a time. I go by that!
04-19-2014, 03:11 PM   #18
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I am going throught the diagnosing process currently for Crohn's and I am 23 years old. It's been so scary and I know exactly what you are going through. I haven't been prescribed medication yet. I just found out a few days ago so I have a follow up appointment soon. This forum is definitely a HUGE help! Let me know if you need anything! Sounds like we are going through the same process
04-21-2014, 03:22 PM   #19
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Hi Paigey! It is very scary. I don't like taking medications and they have me on Prednisone and Azathioprine too. I have an appointment in the middle of May. However after taking the azathioprine for two weeks I need to go for blood work just to make sure everything is okay.

Thank you! And if you need anything as well let me know.

What is your diet like? I'm eating chicken, sweet potatoes, chicken/rice soup, and ensure. Peppermint tea is the greatest too!!
04-21-2014, 03:30 PM   #20
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Hi Paigey! It is very scary. I don't like taking medications and they have me on Prednisone and Azathioprine too. I have an appointment in the middle of May. However after taking the azathioprine for two weeks I need to go for blood work just to make sure everything is okay.

Thank you! And if you need anything as well let me know.

What is your diet like? I'm eating chicken, sweet potatoes, chicken/rice soup, and ensure. Peppermint tea is the greatest too!!

So far, I have been staying away from spicy and fried foods. I have been keeping my diet the same to see what my trigger foods are. I have figured out that cream based foods are a big no no... haha It's kind of a trial and error process so far. I have also found the ground beef has been upsetting my stomach as well. Sweet potatoes have been amazing! I have also been taking benefiber and eating activia. With my case of Crohns, I have constipation instead of diarrhea so I have to try and regulate myself. I'm kind of a random case it feels like. Good to know about the rice! I will try and include that more into my diet as well
04-21-2014, 05:29 PM   #21
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So far, I have been staying away from spicy and fried foods. I have been keeping my diet the same to see what my trigger foods are. I have figured out that cream based foods are a big no no... haha It's kind of a trial and error process so far. I have also found the ground beef has been upsetting my stomach as well. Sweet potatoes have been amazing! I have also been taking benefiber and eating activia. With my case of Crohns, I have constipation instead of diarrhea so I have to try and regulate myself. I'm kind of a random case it feels like. Good to know about the rice! I will try and include that more into my diet as well
Yeah same here...although I did cheat a little because it was Easter so I had a bit of candy this weekend. Yeah cream foods are definitely a no-no for me as well. I tried activa in the beginning and I was fine but then I couldn't eat it anymore . I've been getting a lot of constipation lately as well...how is the benefiber? Maybe I'll try that...
04-21-2014, 05:54 PM   #22
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Speaking of Easter, another food I noticed that seems safe for me and has lots of cooking utility is eggs. I think like 90% of my diet at this point is eggs after some fashion.
04-21-2014, 07:07 PM   #23
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Yeah same here...although I did cheat a little because it was Easter so I had a bit of candy this weekend. Yeah cream foods are definitely a no-no for me as well. I tried activa in the beginning and I was fine but then I couldn't eat it anymore . I've been getting a lot of constipation lately as well...how is the benefiber? Maybe I'll try that...
Benefiber is great so far! My doctor did tell me that if you aren't used to it, start it in small doses because it can make you constipated. I started with just one teaspoon, once a day. It says on the package, 2 teaspoons 3 times a day. I quickly moved it up once I got used to it. Its great because you can't taste it AT ALL and its not gritty. I put it in my tea. You could put it in your peppermint tea!! Let me know if it works for you
04-21-2014, 07:38 PM   #24
CrohnsNewbie2
 
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Benefiber is great so far! My doctor did tell me that if you aren't used to it, start it in small doses because it can make you constipated. I started with just one teaspoon, once a day. It says on the package, 2 teaspoons 3 times a day. I quickly moved it up once I got used to it. Its great because you can't taste it AT ALL and its not gritty. I put it in my tea. You could put it in your peppermint tea!! Let me know if it works for you
I will definitely try that out and let you know
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