Comments for Coping With Crohns http://www.coping-with-crohns.com Tue, 06 Jan 2009 23:14:44 +0000 http://wordpress.org/?v=2.6.5 Comment on Communicating with my Doctor - How Important by Debi http://www.coping-with-crohns.com/71/communicating-with-doctor-how-important/#comment-178 Debi Sat, 03 Jan 2009 02:31:54 +0000 http://www.coping-with-crohns.com/?p=71#comment-178 I truly was blessed with a wonderful GI DR. who...I call my Angel! I was over dosed at a local hospital with IV steroids and sent to another hospital where she saved my life...and I have been a successful Humira user for 3 yrs now! I am so thankful! You know your body...so definitely the Dr should listen to the patient suffering! I hope you are doing better! Sincerely...with high hopes I truly was blessed with a wonderful GI DR. who…I call my Angel! I was over dosed at a local hospital with IV steroids and sent to another hospital where she saved my life…and I have been a successful Humira user for 3 yrs now! I am so thankful! You know your body…so definitely the Dr should listen to the patient suffering! I hope you are doing better! Sincerely…with high hopes

]]> Comment on Communicating with my Doctor - How Important by Marianne http://www.coping-with-crohns.com/71/communicating-with-doctor-how-important/#comment-177 Marianne Sat, 03 Jan 2009 00:29:59 +0000 http://www.coping-with-crohns.com/?p=71#comment-177 I love the form! What a fantastic idea. You doctor does not sound like he/she is listening to you quite closely enough. I am so glad for my gastro. I just had to switch insurance and I don't know if she is on my new plan!!! I need o check that ASAP. I hope you get to feeling better. I am going to write up your communication form on crohnsdiseaserelief.com. I think this could help others a lot. Marianne I love the form! What a fantastic idea. You doctor does not sound like he/she is listening to you quite closely enough. I am so glad for my gastro. I just had to switch insurance and I don’t know if she is on my new plan!!! I need o check that ASAP.

I hope you get to feeling better. I am going to write up your communication form on crohnsdiseaserelief.com. I think this could help others a lot.

Marianne

]]> Comment on Nerve Pain and Prednisone Side Effects by Bridget http://www.coping-with-crohns.com/21/nerve-pain-and-prednisone-side-effects/#comment-176 Bridget Mon, 22 Dec 2008 17:06:59 +0000 http://www.coping-with-crohns.com/?p=21#comment-176 I just turned 16 a few days ago, and I was diagnosed with Crohn's when I was 14. I also JUST got over a flare about 2 weeks before my birthday, so that was a nice present. But as a total buzz kill, my doctor put me on Prednisone. I cannot tell you how much I hate steroids. I would honestly rather just be sick sometimes. I get all the side effects you mentioned (and more): moon face, breakouts, abdominal weight gain, mood swings, insomnia, super-human eating habits; and these are definitely hard to deal with as a sophomore in high school. My friends and acquaintances are very nice and understanding, but its hard when I'm always feeling self conscious. I never smile anymore because it just makes my face appear BIGGER. I'm weaning off the Prednisone now, and I'm due to be steroid-free on January 12th, but I know from past experiences that it takes several months for my face to be back to what I deem "normal". The weight gain sucks too, I'm just glad that I usually lose about 10 pounds when I have a flare up (my Crohn's is on the "severe" end of the scale), so I give myself a cushion to fall back on when the super-human hunger and unusual fat distribution come into play. Best of luck to everyone who takes Prednisone. I wish there was an alternative, the side effects are horrible, but I'm glad it puts me in remission. I guess a fat face is better than being dead. I just turned 16 a few days ago, and I was diagnosed with Crohn’s when I was 14. I also JUST got over a flare about 2 weeks before my birthday, so that was a nice present.

But as a total buzz kill, my doctor put me on Prednisone. I cannot tell you how much I hate steroids. I would honestly rather just be sick sometimes. I get all the side effects you mentioned (and more): moon face, breakouts, abdominal weight gain, mood swings, insomnia, super-human eating habits; and these are definitely hard to deal with as a sophomore in high school.

My friends and acquaintances are very nice and understanding, but its hard when I’m always feeling self conscious. I never smile anymore because it just makes my face appear BIGGER. I’m weaning off the Prednisone now, and I’m due to be steroid-free on January 12th, but I know from past experiences that it takes several months for my face to be back to what I deem “normal”.

The weight gain sucks too, I’m just glad that I usually lose about 10 pounds when I have a flare up (my Crohn’s is on the “severe” end of the scale), so I give myself a cushion to fall back on when the super-human hunger and unusual fat distribution come into play.

Best of luck to everyone who takes Prednisone. I wish there was an alternative, the side effects are horrible, but I’m glad it puts me in remission. I guess a fat face is better than being dead.

]]> Comment on Pain Management by kit http://www.coping-with-crohns.com/8/pain-management/#comment-174 kit Mon, 15 Dec 2008 09:37:03 +0000 http://www.coping-with-crohns.com/?p=8#comment-174 This is a great post! I am trying to conceive with my husband and it's not suggested that I take T3s or any other meds that would actually take my Crohn's pain away, lol. But baths really do help, and so does some gentle stretching like yoga. Sometimes when I'm really 'feeling it' it seems counter-intuitive to do any exercise, but after a half hour of gentle poses, it's a world of difference. Also, hot water, herbal (mint or chamomile) tea, or even hot water with lemon seem to help warm me up and relax my abdomen. Good luck and my best to you. This is a great post!
I am trying to conceive with my husband and it’s not suggested that I take T3s or any other meds that would actually take my Crohn’s pain away, lol. But baths really do help, and so does some gentle stretching like yoga. Sometimes when I’m really ‘feeling it’ it seems counter-intuitive to do any exercise, but after a half hour of gentle poses, it’s a world of difference.
Also, hot water, herbal (mint or chamomile) tea, or even hot water with lemon seem to help warm me up and relax my abdomen.
Good luck and my best to you.

]]> Comment on Switching Digestive Care Specialists by Marianne http://www.coping-with-crohns.com/63/switching-digestive-care-specialists/#comment-124 Marianne Fri, 21 Nov 2008 14:19:58 +0000 http://www.coping-with-crohns.com/?p=63#comment-124 It sounds like a good thing you are switching doctors. I think its really important for your GI to be really good and pay attention to you since chronies end up spending a lot of time in the GI office, if you know what I mean. Now, I think I need to find a new neurologist... It sounds like a good thing you are switching doctors. I think its really important for your GI to be really good and pay attention to you since chronies end up spending a lot of time in the GI office, if you know what I mean.

Now, I think I need to find a new neurologist…

]]> Comment on Still sick.. still lower abdominal pain. by Linda http://www.coping-with-crohns.com/14/still-sick-still-lower-abdominal-pain/#comment-20 Linda Mon, 10 Nov 2008 19:04:52 +0000 http://www.coping-with-crohns.com/?p=14#comment-20 I have had Crohn's for 50 years and during my colonoscopy this summer I was hoping they would say they had been wrong and what I had could be cured. I think that is one thing that seperates Crohn's patients from other disease's. We don't complain a lot, we live and work with the pain and we are optimistic. And I gotta tell you, we have made wonderful strides in the last few years. When They first found my problem they didn't have a label and all they could do was a resection (2 of them at 10 years old) Then just lots of prednisone in the 70's and more surgery. Today we have wonderful pain medicine, great drugs to help treat it and tests like the colonosscope. Now I am just waiting for a cure (and sleeping a lot and taking a handful of medicine) I have had Crohn’s for 50 years and during my colonoscopy this summer I was hoping they would say they had been wrong and what I had could be cured. I think that is one thing that seperates Crohn’s patients from other disease’s. We don’t complain a lot, we live and work with the pain and we are optimistic. And I gotta tell you, we have made wonderful strides in the last few years. When They first found my problem they didn’t have a label and all they could do was a resection (2 of them at 10 years old) Then just lots of prednisone in the 70’s and more surgery. Today we have wonderful pain medicine, great drugs to help treat it and tests like the colonosscope. Now I am just waiting for a cure (and sleeping a lot and taking a handful of medicine)

]]> Comment on How are you feeling with Crohns? by Linda http://www.coping-with-crohns.com/33/how-are-you-feeling-with-crohns/#comment-19 Linda Mon, 10 Nov 2008 18:45:34 +0000 http://www.coping-with-crohns.com/?p=33#comment-19 What a weekend. I had severe pain in my abdomen and was extremely nauseated. I have been dealing with Crohn's since my first surgery in 1959 (although it wasn't labeled at that time) We have made a lot of progress in treating it, but I am just soooo tired of the constant pain and trips to the bathroom when I am trying to work. Not to mention the 1 year old and 2 year old I am raising - at 59 years old. I have no energy, too much pain and too little time to take care of myself. Thanks for listening What a weekend. I had severe pain in my abdomen and was extremely nauseated. I have been dealing with Crohn’s since my first surgery in 1959 (although it wasn’t labeled at that time) We have made a lot of progress in treating it, but I am just soooo tired of the constant pain and trips to the bathroom when I am trying to work. Not to mention the 1 year old and 2 year old I am raising - at 59 years old. I have no energy, too much pain and too little time to take care of myself. Thanks for listening

]]> Comment on Pain Management by josh http://www.coping-with-crohns.com/8/pain-management/#comment-17 josh Tue, 09 Sep 2008 18:09:06 +0000 http://www.coping-with-crohns.com/?p=8#comment-17 I fully understand your suffering, I was diagnosed with crohn's last year around this time. I am a second year music student at capital university, and having crohns was one of the hardest things to deal with last year. In fact I had to drop out second semester to have a resection. This tore me up on the inside,(mentaly and physically lol) because I had left home to persue my life long dream, and now there was something that was tottaly beyond my controll holding me back. The stress from the conservitory, and from my illness almost drove me insane, not to mention the deploreable conditions of the restrooms and showeres, but I made it back this year and am doing preety well. Any ways to get to the point I was trying to make, I had a perferated ear drum over the summer and was prescribed vicodin, and when ever I took it I noticed that my cramps would go away, and my bowels would slow down. For me this was a god send, expeasly in such a stressfull enviornment, because the vicodin relaxed me, and made me feel alot better aobut things. So say what you will about addiction and taking the drug for reasons other than pain, I say if it makes you feel that much better, and Its not awful for your health, then you should do whatever you can to improve your condition. I might add I'm not taking the drug to get high, seeing as how what I was prescribed is basicly one step above tylanol (5-500), I just take it like i would a pain killer, because like I've herd from so many other people with crohn's, tylanol just does not cut it. God bless and take care. I fully understand your suffering, I was diagnosed with crohn’s last year around this time. I am a second year music student at capital university, and having crohns was one of the hardest things to deal with last year. In fact I had to drop out second semester to have a resection. This tore me up on the inside,(mentaly and physically lol) because I had left home to persue my life long dream, and now there was something that was tottaly beyond my controll holding me back. The stress from the conservitory, and from my illness almost drove me insane, not to mention the deploreable conditions of the restrooms and showeres, but I made it back this year and am doing preety well.
Any ways to get to the point I was trying to make, I had a perferated ear drum over the summer and was prescribed vicodin, and when ever I took it I noticed that my cramps would go away, and my bowels would slow down. For me this was a god send, expeasly in such a stressfull enviornment, because the vicodin relaxed me, and made me feel alot better aobut things. So say what you will about addiction and taking the drug for reasons other than pain, I say if it makes you feel that much better, and Its not awful for your health, then you should do whatever you can to improve your condition.
I might add I’m not taking the drug to get high, seeing as how what I was prescribed is basicly one step above tylanol (5-500), I just take it like i would a pain killer, because like I’ve herd from so many other people with crohn’s, tylanol just does not cut it.
God bless and take care.

]]> Comment on Prednisone Packs on the Weight by Black Beans and Rice Salad - Cooking with… http://www.coping-with-crohns.com/23/prednisone-packs-on-weight/#comment-15 Black Beans and Rice Salad - Cooking with… Sat, 23 Aug 2008 18:36:58 +0000 http://www.coping-with-crohns.com/?p=23#comment-15 [...] seasonings, I just use salt (or the No-Salt Salt, since I need to watch my sodium because of my crohn’s disease and presdnisone issues). But you could use chipotle seasoning, red pepper, or whatever suits your [...] [...] seasonings, I just use salt (or the No-Salt Salt, since I need to watch my sodium because of my crohn’s disease and presdnisone issues). But you could use chipotle seasoning, red pepper, or whatever suits your [...]

]]> Comment on Nerve Pain and Prednisone Side Effects by The Mom http://www.coping-with-crohns.com/21/nerve-pain-and-prednisone-side-effects/#comment-14 The Mom Sun, 17 Aug 2008 05:10:36 +0000 http://www.coping-with-crohns.com/?p=21#comment-14 This all rings so familiar. Hubby went through this...was down to 130 then gained like 50 pounds in a short time...he has stretch marks in his armpits and inner thighs! He gets joint pain in his ankles too. Could that be sciatic nerve pain? Hang in there!! I just want you to know that I offer love and support...we've been there, could possibly get there again and know how tough it really is! The Moms last blog post..<a href="http://cheaperthantherapyjen.blogspot.com/2008/08/word-association-saturday_16.html" rel="nofollow">Word Association Saturday</a> This all rings so familiar. Hubby went through this…was down to 130 then gained like 50 pounds in a short time…he has stretch marks in his armpits and inner thighs! He gets joint pain in his ankles too.

Could that be sciatic nerve pain?

Hang in there!! I just want you to know that I offer love and support…we’ve been there, could possibly get there again and know how tough it really is!

The Moms last blog post..Word Association Saturday

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