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Crohn's Disease Forum » Your Story » Something to think about for all Crohns Forum Members


 
12-20-2011, 12:30 PM   #61
erinever
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Great tips, Mike! Thank you for posting
03-14-2012, 12:36 PM   #62
goldbrick911
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Your empathy and incite is impressive!
03-14-2012, 02:43 PM   #63
CLynn
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Excellent, great job!
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Cheryl
Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
03-30-2012, 10:32 PM   #64
Concern411
 
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Mike you are a scholar and to sum everything you said is, we are connecting communities and helping them to live. We are our own support group that should understand any story that hits this air wave. WE ARE ONE.

Sorry I've been away, but I am a soldier in this army of Crohn's and will share with you all in the near future. My wish today is for everyone to have a good day. Talk to you soon

Last edited by Concern411; 03-30-2012 at 10:35 PM. Reason: spelling is bad
03-30-2012, 10:33 PM   #65
Concern411
 
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Please forgive my spelling.
04-03-2012, 05:50 AM   #66
goldbrick911
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Thanks to all of you for your support. Some of the info. I share is highly emotional and private. I do it because I really feel for the young people who have been "body slammed" (no pun intended) by this disease, just when they start thinking they can master the complexities of this world. REMEMBER, and listen, doctors and politicians, every time this disease is allowed to "plow up" our bowel lining like a field, we get one day closer to an obstruction. You have NO RIGHT to tell us NO to ANY tool that helps us master or temporarily control this disease!! Many blessings to all my brothers and sisters!
05-25-2012, 03:03 PM   #67
punkgirl
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I feel so welcome here after reading this. Great post, TY
06-05-2012, 09:27 PM   #68
Diamondinside
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Hi. I am not a parent, but I did get diagnosed with Crohns when I was 10. It can be pretty difficult growing up with the disease, emotionally and physically. It's a very scary thing to deal with. And like you, I don't like the idea of taking medications. When I was young they put me on everything, and most of it was trial and error. The trick is really trying to find what works for you. Unfortunately, everyone with this disease is affected soooo differently it's hard to just give or get advice. I also have crohns in my esophagus as well as rarely suffer from diarrhea (I'm more likely to just stop going). My mouth is affected greatly from it; I get ulcers in my mouth weekly and if I get sick or even just stressed out I'll have quite a few at once. I really have to take good care of my teeth and gums and brush my tongue really well.

I also had a really difficult time with my monthly cycle growing up bc of the Crohns where I would have a flare-up every cycle. For me birth control pills really straightened everything out, BUT I had some really bad reactions to some that actually put me right into the hospital so be careful!
06-05-2012, 09:49 PM   #69
revaro
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Dear Diamoninside...You certainly are a DIAMOND. Thank you for sharing your story. And to all others.

I have come to realize that Crohn's affects so many people, which I didn't before, and that it's just not a select few who have the disease -- often described as Jewish people from Eastern Europe heritage (which I am),when Googling "What is Crohns." Seems so many of us out there.

I was diagnosed some 30 years ago, at that time only had occasional flair-ups. Thought it was GI distress. It wasn't until five years ago when it was discovered I had 3 lb. benign mass -- I was one sick "puppy," operation successful. Living alone it wasn't easy post-surgery but I have a good support system (friends). After that I thought I was "Scot Free," stopped taking meds after a year, and continued eating whatever I wanted not realizing Ol' Crohns would rear its ugly head. Crohns got to me two visits to Eroom, tests and medication up the WAZOO. I'm one of the lucky ones who has been able to function with few side effects. For that I am grateful.

Thank you everyone for sharing your personal stories. It's healthy for us to be able to express how we feel, how we're doing, etc., especially to those who really know and care what it's like to have Crohns Disease.

ro-ro

Wishing ALL THE BEST to everyone.
06-19-2012, 03:23 AM   #70
hunnibunny
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my mum and I both have crohns, we are both on the SCD diet and my inflamation on my last visit to hospital was greatly reduced! infact my gastroenterologist was amazed and said it was more or less the same as a person without the disease! I started the diet about 5 months ago and after just 2 weeks on the diet I went from going to the tolet 20 times a day(unless i took my lopermide hydrochloride) to just 1 - 2 'normal' bowel movements a day(I DO NOT HAVE TO TAKE THE DIARRHEA TABS ANYMORE I have....i am 95% pain free too! the fact that my mum has had a similar improvement after following the diet with me is clear evidence that FOR SOME PEOPLE the SCD diet is very benificial. There is a list of legal foods like chiken, fish, any vegtable except gasy ones like brocilli(unless you can tolorate it) any fruit, extra virgin olive oil only! honey...there are some great recipes its not as hard as you think..I grate corgettes to make pasta cook it with some onions and fresh garlic squeeze of lemon juice and its amazing..i can eat tons of it...banana pancakes made with nut flour and topped with blueberries roasted peppers with tuna.. sorry to ramble on.. I just had to leave a message because I know how terrible this disease is and after 2 years of misery(my mum for nearly 20 years ) we are living life again. Check out the 'legal and illeagal list of foods I know it sems like there is a lot you CANT eat but there is an awful lot you CAN!! you have to change your way of thinking...if you can PLEASE give the diet a go..theres nothing to lose ..we also both take digestive enzymes and Acidophilus complex xxx
07-27-2012, 09:40 PM   #71
BadGut
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Hello. My 11 year old daughter has just been diagnosed with Crohn's. I am still in the denial stage as I don't see her symptoms as that bad. I worry that the medication they will recommend will make her feel worse than she does right now. I am wondering if anybody has had similar symptoms and what has happened over the years? She currently is anemic and hasn't grown much in the last year, has inflammation in her stomach, esophogas and a little in the colon; but also has a few ulcers in different places. The one that bothers her is in the esophogas as it hurts a little when she eats. She doesn't have any diarrhea or stomach pain. Am I delusional to think this will be the extent of her symptoms? I so desperately want her to avoid long term medication and its side effects. Is it possible to monitor the inflammation by taking blood tests every few months and being careful with what she eats? And then, if it gets out of control, take the meds?

Where should I post her story? I'm not even sure this post will work. I've never posted on any website!

Thank you in advance for your help, anybody.
Jojg--welcome and I'm glad you are finding some good advice. I was 13 when I was diagnosed with Crohn's and I can tell you it was very difficult. That was the age you "don't want to be different" but here you are with a disease that makes you different. Your support will, probably already does, help your daughter sooooo much. My mom helped me find the most important message in all of the ordeal and please, Let her know that she has a choice she can control the disease (hopefully...I think we all find ways of doing so) or the disease can control her.
I was put on Predisone 50 mg a day and it put A LOT of weight on me...mostly water. But I was finally able to go do something without finding the closest restroom! But I can still, like everyone on here probably can, tell you where all the bathrooms are in all the stores around town. Anyway, you and your daughter have all of us to help you out in anyway we can!
07-27-2012, 10:58 PM   #72
723crossroads
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Dear badgut,
I am so sorry for what this must do to you as a mother. I am a grandmother and would hate to see my grandchildren go through crohn's or Ibs of any kind. I have crohn's and I am able to control it when I take my meds and stay away from fried foods and things that cause me the runs. You should start a food diary and see if you can figure out what causes your daughter's symptoms to worsen and then avoid those foods. That's what I have done. I cannot eat fried foods or popcorn. I avoid whole nuts but can tolerate peanut butter. Everyone is different, so go by that as much as you can. god bless and I hope this has helped. Love, Teresa
08-28-2012, 04:18 PM   #73
KevinHumphries
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Last night i wrote a post on the pain and addiction thread, but im more than happy to share my thoughts directly to you about this. Chronic pain is something that nobody should have to deal with, not when there is medication out there that can help you. I understand your concern about addiction, but there is a big difference between addiction, and dependance. I am dependant on my oxycodone, but i dont let it control my life. When taken properly, and by that i mean only taken for pain relief, not to relieve mental pain, or to get high, there is very little chance that you will become a addict. My main point in what i wrote last night was that we have a chronic disease, so if you end up taking them, there is no reason to quit. Therefore no reason to worry about becoming dependant. You deserve to have a normal quality of life, one that doesnt include chronic pain. And if you're worried about feeling loopy all the time, dont, that will go away after a little time to adjust. We all deserve a good quality of life.
08-28-2012, 06:43 PM   #74
lseibert
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Kevin,

You are so right, thank you for the post!

Be kind to yourself......
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Linda

[SIZE="1"]Crohn's Disease and IBS
Diagnosed: 2001(symptoms for 22 years prior)
Currently on:
Desipramine for IBS, Vicodin for pain
Surgery: Small bowel strictureplasty 02/19/11 and 11/17/11, then a small bowel resection 4/6/12, Hemicolectomy 9/2016
Supplements:
Multivitamins & Vitamin D3
Prednisone: Never again
Imuran (azathioprine)= Pancreatitis
Entocort EC (Budesonide) and medical adhesives = Rash
Humira=numb feet & hands
10-14-2012, 10:33 AM   #75
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You have a mastery with words. It could not be said better than this. The worst pain you have experienced IS the worst pain. It is not a competition of who is sickest. That in itself is sick in a different way.
11-10-2012, 07:56 AM   #76
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New here. I appreciate all of the post.
02-10-2013, 10:27 PM   #77
lizbeth
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Hi Kevin,

Your post is amazing, I've been on a cocktail of pain relief for over two years to manage other issues yet when I was in hospital before Christmas I was made to feel like a junkie for requesting some meds, its not right that staff can with hold something that is prescribed by a GP, I was so glad to get home and manage my own meds, they even took me off my regular insulin and I had to fight to get back on it! I completely agree with what you say about not being worried about addiction, we need pain relief in order to function but as long as we are sensible about it there shouldnt be a problem.

Im new to the forum and so far I think its been brilliant, thank you everyone.
02-25-2013, 05:10 PM   #78
Jim (POPS)
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thank you for that message, very good. Wel said
03-04-2013, 08:47 PM   #79
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Thank you - wise words :-)
03-05-2013, 01:35 PM   #80
lizbeth
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Thank you and you are very welcome
03-17-2013, 07:37 AM   #81
ThankGoodness
 
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This was the first time I read this. This was great, thank you.
03-18-2013, 11:14 AM   #82
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Hear hear mikey,

I can still remember what it was like when I was 16. Then I was classes as a child who ' didn't need to know' the details. That was my parents job. All well meaning but I was sooo scared and didn't really know what it was all about. Most of my knowledge was gained through trial and error. I know more now but after having numerous investigations as a 16 yr old it left me heading in the opposite direction when someone said oscopy!

Thanks for getting it all into context.
03-20-2013, 11:04 PM   #83
Jan Bernstein
 
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I enjoyed what you wrote. I have a daughter who id 19 diagnosed with crohns. She has had one surgery, (diagnosed last year) and is now so depressed. Since I suffer from derpression I can certainly relate, but my heart is brreaking for her. She is in college but does not attend classed, too ill still. She won't drop out because she says that the disease then won. She is almost out of money for college and my heart is breaking. I can't afford to help her out financially. I am drained and don't know what to do. She is seeing a therapist that has stated treating her with meds, but so far no good. Help, pplease
03-20-2013, 11:57 PM   #84
723crossroads
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Jan, I don't know how to help you but I can say that worrying is only going to make it worse for you. I went thru years of worry over my son and daughter who were addicts. I ended up with cancer and crohn's. Don't do this to yourself. I have found that turning all my cares and children over to God and trust him to work it out helps me so much. He is much bigger than us and our problems. Believe in Him and trust that He will eventually work it out.
I hope very much that your daughter does a complete turn around and can finish her schooling. I will pray for her.
06-12-2013, 08:14 PM   #85
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Hi there! Thank you for your words of sensibility and sensitivity. I agree wholly that ones disease is as individual as individuals. The old adage of : thinking of others is a great example for living. Our mutual journey has indeef many stops and one could be stranded at any one stop for any amount of time.
When they say: that this disease is debilitating-how rigjt they are! Depression, anxiousness, fear, tiredness, procrastination etc are in my experience only a handful of the negative side-effects of this disease.
I would like to thank you's for accepting me into this fellowship of IBD sufferers and look forward to offering my support to yous all!!!
Thanks Anthony Amcco
07-16-2013, 11:02 PM   #86
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Thank you Mike. You described some issues I met the last period when I was telling about my Crohn to family and colleagues. They say they understood and some say that there are people who even more experience more sickness than I am like cancer diseased patients. Felt misunderstood then. There's a awful lot of misunderstanding out there, so that's why I became to this forum. Here are people who know CD from the inside, how it feels and how it affects your daily life so much. And when they read your text in the topic start and feel it by heart this forum will be a place of understanding and a place to find the courage again to cope with everydays life with CD within!
09-16-2013, 01:25 PM   #87
mmelmarc
 
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Anyone use Collidal Silver to help with Crohn's
12-12-2013, 09:24 AM   #88
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Although, being diagnosed with Crohn's almost 25 plus years. I was in remission for 18 of those years. I am trying to get reacquainted with this disease! I am new to this forum and am very appreciative to have found such a wonderful support group in all of you!

I loved your post! It makes me feel so very welcomed!!
12-12-2013, 10:41 AM   #89
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Welcome, Gins.
12-12-2013, 11:39 PM   #90
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I mean Gina

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