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Crohn's Disease Forum » Your Story » Just talking about everyday life with Crohns


02-16-2017, 10:35 PM   #1
meowser89
 
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Just talking about everyday life with Crohns

Hey nice to meet you all

Unfortunately it has to be under the terms of us all having one thing in common: Crohn's Disease

I wanted to join this community to freely talk about my experience and get to know other people who are dealing with this nasty disease because sometimes it can be so isolating and lonely being the only one you know dealing with these constant symptoms.

Just a short intro of myself: I'm 27. Female. From Virginia. Dx in 2005 but definitely knew I had this my whole life. I am forever thankful for my parents pursuing my issue and not stopping when being told " its just an upset stomach" or "your daughter is just lactose intolerant". I have had a bowel obstruction (which I heard is worse than child birth and I completely believe that cause my god that pain was unbearable).Laparoscopic surgery for bowel restriction in 2009.

I just wanted to be able to know that I am not alone. I constantly get tired of feeling so nauseous and sick to my stomach everyday of my life. That's not including the constant diarrhea that can occur over 10+ times a day. I am not the type of person who also likes to complain but I feel like Crohn's disease is such a part of me that I am constantly having to say I don't feel well today and this that and the other. I still however get my work done and am about to graduate from Ultrasound school. I just feel that I sometimes complain to much to my boyfriend, to my parents, to my friends. But I don't do it because I have nothing else to say...its just that one day I wish I wouldn't have to worry about constantly thinking about my stomach.

I have been on multiple medications like I am sure many of you are currently on right now. My medication I am on now is Humira, I hate how these medicines have such bad side effects and can potentially cause Cancer. I have been currently reading up on CBD oil and all of the benefits that it has towards patients with Crohn's. My state is currently trying to pass a bill to expand the list of ailments that this oil is available to and Crohn's happens to be one the list.

Sorry from my randomness but I just wanted a place where I could come to that I would feel comfortable talking and possibly have someone once in my life relate to some issues I am having

Thanks for listening and have a great day
02-16-2017, 10:41 PM   #2
ronroush7
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Welcome. I am sorry you have this disease. Thanks for sharing your story. Feel free to come here anytime. Nice to see a fellow Virginian.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-16-2017, 10:49 PM   #3
meowser89
 
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Welcome. I am sorry you have this disease. Thanks for sharing your story. Feel free to come here anytime. Nice to see a fellow Virginian.
Thank you

Hope your journey with Crohn's disease at the moment is going well.

And yes Virginia is awesome born and raised here!
02-16-2017, 10:51 PM   #4
ronroush7
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Thanks. I am struggling a little right now but my mother used to say that there is always someone worse than you.

02-16-2017, 11:30 PM   #5
GI Jane
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Welcome,
I used to be stationed in Virginia nice place, miss those blue ridge mountains. I know what you mean. It gets old answering my family when they ask how am I doing. I want to tell them fine and I sometimes do but not too often.

I am impressed going through school with that stress. All the side effects always are scary. I seem to get the rare ones. Lupis from Remicade but Envivio is doing well for me right now. I've had two doses and some of my markers are better. They think after my soon to be surgery I will do well with Envivio keeping it at bay.

Take care.
02-17-2017, 12:01 AM   #6
Hypocrohniac
 
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Hello Meowser89. A very warm welcome to you. This is a great place to come when you are sick of being sick, tired of being tired, and always saying "I'm ok" even when you are never actually feeling ok. Ever.
Fingers crossed for CBD oil approval in your state!
02-17-2017, 12:58 PM   #7
scottsma
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Hello and welcome,You've come to the very best place for support,understanding and friendship.I know what you mean about feeling you're always whinging.I often say "I'm fine",we all do it.But when I say that and I'm NOT fine,I want to take it back,because I need them to know how much I suffer in silence,if you get my meaning.I have such respect for those of you who manage to struggle through education,work and raising a family,while trying to cope with this damned disease.
02-17-2017, 01:04 PM   #8
ronroush7
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A lot of times my wife will come to the bathroom door if I have been in there for a while and ask if I am okay. Unless I have had an accident, I will say I am okay.
Not sure if that is the right approach.
02-17-2017, 05:03 PM   #9
Hypocrohniac
 
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Sometimes I will wince, or groan, or cry, and say "I just can't hide it today". Maybe try that, Ron. I think it helps people to understand how much we do hide, and gives them some perspective on what we are going through when we admit that some days it is just too much.
02-17-2017, 05:10 PM   #10
ronroush7
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Thanks
02-19-2017, 02:16 PM   #11
christine richter
 
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Our son is 21, has had crohns since 13, with surgery at age 18. Had a bad flare last year, started using cbd capsules, curcurmin, some mj, and double doseof Remicade. Feeling better but the emotional toll is tough.
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