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Crohn's Disease Forum » Your Story » Finally decided to post!!!


 
02-06-2017, 03:23 PM   #1
Supernatural16
 
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Finally decided to post!!!

Hi everyone, im a 16 year old girl nd i was diagnosed with crohns 6 months ago nd since then iv read a lot of posts on this forum and it has helped me soo much ( thankyew everyone fr ur advice ) but iv been too scared to post bt today I thought u know what let me just do it.
Iv never really had any health problems so being diagnosed with crohns was a major shock ( as I didn't really have any symptoms before diagnosis apart from swollen lips ) but afta being diagnosed things started to go downhill. I was going to the loo up to 8 times a day ( nd was losing a lot of blood ) nd i was being sick a couple of times a day, not to mention the extreme fatigue. First the docs wanted to try me on the ensure shakes bt i was constantly vomiting so then I was on steroids and azathioprine which didn't do much. I struggled a lot as I had to go skwl whilst being sick nd continuously rushing to the toilet thruout the day. I honestly felt so worthless and upset as I was soo exhausted all the time and my life turned upside down, as I suddenly cud barely stay awake and my social life just collapsed nd it was horrible. I'm now on humira ( been on it fr 3 months ) nd it seems to have helped a lot bt symptoms seem to slowly be creeping bak nd the doc wants to see if its just a blip nd i really hope it is. All things considering i think iv managed pretty well in skwl cz since i havent told my friends about the crohns iv just tried to mask the pain nd with great struggle i managed to do my GCSE mocks ( i got 3 A*, 3A nd 2B). However recently iv started to lose my hair a lot, in the last few months iv lost about half of my hair nd its really distressing as my hair was really thick nd its soo thin nd scraggly nw. I find it really hard nw to go to skwl nd fake a smile wen all i want to do is hide away as im so self conscious about my hair ( evn tho it isnt too noticeable yet ).I just feel so selfish complaining because I know I don't hav it nearly as bad as most people nd my symptons hav got considerably better bt I just hate the uncertainty, like not knowing if I'm going to be able to get thru my exams, or if the humira will continue to work or if I'm gna be able to still go to college and uni. Iv just been feeling soo stressed recently, any advice??
Sorry fr the long message bt it felt good getting it off my chest.
02-06-2017, 04:39 PM   #2
ronroush7
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Welcome. I don't know for sure but you might want to see a dermatologist and see if there is any connection between the Humira and the hair loss. I hope not. If that is the case, there are other biologics the doctor can try. Sending support.
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02-06-2017, 04:48 PM   #3
Supernatural16
 
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Thankyew for your reply. And my doctor doesn't think the humira is linked to the hair loss. I had a blood test 2 weeks ago which showed I had low vitamin D so iv had a booster dose of that last week ( 8 pills ) so I'm hoping that might help with the hair loss. If symptoms keep getting worse doc considering increasing humira injections or starting methotrexate, which I'm quite worried about cz hair loss is a listed side effect on methotrexate unlike humira.
02-06-2017, 05:19 PM   #4
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I have had some thinning of hair loss. I wish you the best.

02-06-2017, 07:44 PM   #5
CYY
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Hi Supernatural16! Welcome to the forum! Feel free to share all your concerns and your vents, I'm sure that everyone here would be more than willing to lend you our listening ears ●‿●

Although I've not been on Humira before, but I've definitely experienced the feeling of being a toilet slave, and getting onboard and off the pain train regularly. There have been times when I too felt useless and ask myself, "why me?", when I just felt like giving up. These are just bad days ._.

I totally can identify with you about being self conscious too. My social life has also been affected because of Crohn's, especially because of insensitive schoolmates who try to tempt me with food while I'm on EEN, and judgemental schoolmates who gave me the "stare" when they see me drinking nothing but formula milk everyday. Whenever people ask me the reason behind Modulen, I'm afraid to give a too detailed reply about what is IBD, for fear of being known as the "diarrhoea girl" for life :/

Being teens, it's alright to be self conscious, it's only natural. What I've learnt, through my experience with Crohn's and Modulen thus far, is that, people are going to judge, and people are going to stare. We can't change that. But, what we can change, is ourselves. We can choose to counter their stares with forgiveness, and deflect their judgement with empathy. Sometimes, the people around us really do care for our well being, but they end up hurting us indirectly because of their actions and words.

But hey, cheer up! You are not alone; everyone here is a sufferer one way or another. We've got a supportive community here, and I'm sure many can understand the situation you're in right now. Even if the whole world is against you, my inbox would always be open to your private messages =)

I'm happy for you that your studies haven't taken a turn for the worse despite your Crohn's diagnosis, unlike mine XD

Right now, I just want to give you a big hug of encouragement (づ。◕‿‿◕。)づ

Keep fighting! And remember, if today was suckish, tomorrow would be better.

Cheers,
CYY ^^

P.S. Does your username have anything to do with the TV show Supernatural by any chance?
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Hi, I'm CYY! (✿◠‿◠)/
Age: 17
Diagnosed with: Crohn's Disease, Supraventricular Tachycardia, Chronic Asthma
Currently on: Methotrexate 20mg/week, Folic Acid 5mg, Atenolol 50mg, Modulen IBD (10 scoops), Ondansetron (PRN), Debridat 100mg (PRN), Anarex (PRN), Ventolin (PRN)
Previously on: Azathioprine 50mg, Propanolol 25mg, Seretide
02-07-2017, 01:28 AM   #6
Supernatural16
 
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Thank you CYY fr ur supportive words and I'm sorry about what u had to go through in school. I agree with forgiving people who hurt us without meaning to as whilst my family are really understanding sometimes they just don't get it. Like they don't get sometimes that I feel to sick to evn get up never mind going owt nd Iv felt like the dark cloud over the family fr a long time. That's why nw I'm trying to just tackle this crohns a day at a time nw to stop giving them grief.
I understand where your coming from about skwl because iv been apprehensive to tell anyone so all of my close friends think I hav a "toilet pass" because of my still swollen lips ( due to crohns ) I'm on medication that has nasty side effects. And everyone else thinks I'm fine. I'm hoping to keep it this way cz I'm scared they wudent understand as it's an invisible illness nd I look fine. We obviously had to tell the teachers nd I'm so self conscious like I feel as if wenever they see they think she's the 'crohns girl' bt I know I'm just being paranoid bt I can't help it.
Thank you bt I feel like my family measures my success based on the crohns like for my mock exam results it was like " u did great despite the crohns" not just "well done".
I agree today's a new day nd hopefully a brighter one. I hope you hav a blessed day! AND YEAHH IT IS SUPERNATURAL THE TV SHOW I AM TOTALLY OBSESSED!!!!
02-07-2017, 02:17 AM   #7
CYY
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Thank you CYY fr ur supportive words and I'm sorry about what u had to go through in school. I agree with forgiving people who hurt us without meaning to as whilst my family are really understanding sometimes they just don't get it. Like they don't get sometimes that I feel to sick to evn get up never mind going owt nd Iv felt like the dark cloud over the family fr a long time. That's why nw I'm trying to just tackle this crohns a day at a time nw to stop giving them grief.
I understand where your coming from about skwl because iv been apprehensive to tell anyone so all of my close friends think I hav a "toilet pass" because of my still swollen lips ( due to crohns ) I'm on medication that has nasty side effects. And everyone else thinks I'm fine. I'm hoping to keep it this way cz I'm scared they wudent understand as it's an invisible illness nd I look fine. We obviously had to tell the teachers nd I'm so self conscious like I feel as if wenever they see they think she's the 'crohns girl' bt I know I'm just being paranoid bt I can't help it.
Thank you bt I feel like my family measures my success based on the crohns like for my mock exam results it was like " u did great despite the crohns" not just "well done".
I agree today's a new day nd hopefully a brighter one. I hope you hav a blessed day! AND YEAHH IT IS SUPERNATURAL THE TV SHOW I AM TOTALLY OBSESSED!!!!
I'm really sorry about your swollen lips and how it has made you even more self conscious. I hope the swelling gets better, and you'll be in remission soon.

Yeah, I totally understand what you mean by people not being able to understand. Sometimes, I find that even my family doesn't understand what I'm going through, not just my friends and teachers. The thing I hate about Crohn's is that it's an invisible rare disease. Nobody has heard of "Crohn's Disease" where I come from, not even the GPs. People think you're perfectly healthy because you don't look sick, but your body's actually in a really big mess.

I've burnt through 7 appointment cards in the last 5 months alone. With so many appointments, it's inevitable that some teachers and classmates would start wondering if this was all just an act to play truant. A teacher has even walked up to me personally, requested that I explain explicitly to her what was Crohn's all about, and then asked me if it was contagious. Perfectly healthy classmates look at my constant absenteeism and tell me that they would love to switch lives with me. Because these people are completely ignorant of the severity of this condition, they have absolutely no idea what they are talking about.

But I guess that's just part and parcel of the Crohn's experience. I plan to keep my Crohn's a secret to as many people as I can. Currently, I tell my classmates that because I'm underweight, I have to drink formula milk for a few months as part of my "intensive treatment". My close friends know that I've got a rare disease, which causes me a lot of health issues and needs to be monitored closely by doctors. My teachers know that I've got Crohn's, and some of them do treat me like I'm a special needs kid, but I've gotten my GI doc to write a letter for me to submit to my teachers, requesting that they keep my medical condition confidential. Maybe you could try doing that too?

I'm happy for you that you've managed to achieve such good grades despite all you've been through. So long as you've put in your best effort, nobody should have the right to demand more of you. Even though my results aren't that good, but I feel that as long as I've done my best, that's all that matters, even if my parents think otherwise.

(I've not watched Supernatural before, since watching TV isn't really my thing, but one of my ex-classmates is crazy over it, which is how I got to know about it. What are some of your hobbies?)
02-07-2017, 02:50 AM   #8
Supernatural16
 
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Yeah I hope I get into remission soon because it's been 6 months nd counting nd I know it can take a long time to get into remission initially bt it's really scary because iv got exams in 3 months nd whilst that seems a long time away I'm worried that I might not be much better then or evn worse :/ I know worrying about exams seems like a trivial thing bt iv always been passionate about my studies nd I really don't want crohns to affect them despite my constant struggle.
I completely get what u mean about about having lots of appointments nd people nd understanding nd my friends hav said that to me be4 " I wish I was u, u get to miss loads of skwl". Trust me u really wudent.
I understand that ur teacher who asked u about crohns was just curious bt I think people shud be more sensitive nd not so abrupt.
I'm lucky in the sense that the teachers don't really question me about the crohns or appointments because I made it pretty clear I want the crohns to be confidential.

I'm still finding it really tough adjusting because from skwl I was going to go on a trip to Paris next month fr a week nd needless to say I had to cancel due to the crohns. Firstly the teacher wasn't very happy wid it bt after we told her about the crohns she was more understanding bt I just hate people knowing.
I agree wid u I'm trying to keep it a secret cz I'm scared of being judged.
I totally wid u as long as u are trying your best that's all that matters.
if u don't mind me asking how old are u??
( I love reading nd tv shows are literally my life, to say I'm obsessed is an understatement )
Just brushed my hair nd had a whole clump come owt bt trying to stay positive 😁 hope skwl goes better xx
02-07-2017, 03:33 AM   #9
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Yeah I hope I get into remission soon because it's been 6 months nd counting nd I know it can take a long time to get into remission initially bt it's really scary because iv got exams in 3 months nd whilst that seems a long time away I'm worried that I might not be much better then or evn worse :/ I know worrying about exams seems like a trivial thing bt iv always been passionate about my studies nd I really don't want crohns to affect them despite my constant struggle.
I completely get what u mean about about having lots of appointments nd people nd understanding nd my friends hav said that to me be4 " I wish I was u, u get to miss loads of skwl". Trust me u really wudent.
I understand that ur teacher who asked u about crohns was just curious bt I think people shud be more sensitive nd not so abrupt.
I'm lucky in the sense that the teachers don't really question me about the crohns or appointments because I made it pretty clear I want the crohns to be confidential.

I'm still finding it really tough adjusting because from skwl I was going to go on a trip to Paris next month fr a week nd needless to say I had to cancel due to the crohns. Firstly the teacher wasn't very happy wid it bt after we told her about the crohns she was more understanding bt I just hate people knowing.
I agree wid u I'm trying to keep it a secret cz I'm scared of being judged.
I totally wid u as long as u are trying your best that's all that matters.
if u don't mind me asking how old are u??
( I love reading nd tv shows are literally my life, to say I'm obsessed is an understatement )
Just brushed my hair nd had a whole clump come owt bt trying to stay positive 😁 hope skwl goes better xx
I understand completely when things get cancelled last minute because of Crohn's. My class had a pizza party at one of my teacher's house last week, but I couldn't go because I felt that it would be too awkward if I went but ate nothing and drank only milk. So I just came up with a random excuse that I had a medical appointment on that day XD

I'm 16, turning 17 this year. My exams were just over and now it's a new school year for me. I'm also quite serious when it comes to studies, and I'm afraid that my grades would drop even further with Crohn's and all that :/

Anyways, good luck with your studies and school life in general! Sending you packets of positive energy...
02-07-2017, 09:59 AM   #10
ronroush7
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Are you on any other drugs besides Humira?
02-07-2017, 12:57 PM   #11
Supernatural16
 
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I'm so sorry I completely get what u meant about the pizza party. I hope things get better for you soon.
And stay positive you can get through your studies and hopefully kick crohns in the backside in the process.
02-07-2017, 12:58 PM   #12
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Are you on any other drugs besides Humira?
No just humira for now
02-07-2017, 01:22 PM   #13
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Hello and welcome,sorry you have to be here at all though.You'll get lots of support and friendship on the forum.Nobody understands a crohnie more than other crohnies.

Have you noticed we have a "Young Adults" thread ? Unfortunately there are to many people just starting out on life's journey who are suffering like you (and CYY).Keep strong.
02-07-2017, 02:23 PM   #14
Supernatural16
 
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Hello and welcome,sorry you have to be here at all though.You'll get lots of support and friendship on the forum.Nobody understands a crohnie more than other crohnies.

Have you noticed we have a "Young Adults" thread ? Unfortunately there are to many people just starting out on life's journey who are suffering like you (and CYY).Keep strong.
Thank you I'll check the thread owt. I'm really glad I found this forum because not a lot of people I know have evn heard of crohns disease so it's nice to get some support.
02-07-2017, 02:53 PM   #15
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Welcome Supernatural16,

This disease is a real drain, mentally and physically. I'm so glad you came here. We all stick together here. I truly think it helps us to improve our lives by staying connected with people who understand us. I'm sorry to hear about your hair loss and lack of energy among all the other stuff going on right now with you. I also think I lost a lot of hair too. Never really did figure it out. Some of my hair grew back though once I got my disease under control by switching my diet. I think with you being young it will come back once you are on the right regimen. Feel free to ask me questions about what I did to get my hair to start coming back if you like. pm me if you wish to not speak publicly. I will try to help you. In the meantime check out nutritionfacts.org it is run by a very smart and humorous Doctor, Dr. Michael Greger. There are all kinds of tips and advice for all sorts of things Crohn's related and it is totally free. My Doctor recommended it to me.

I hope things start to improve my new friend,

cmack
02-08-2017, 02:08 AM   #16
cmack
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http://nutritionfacts.org/video/prev...ase-with-diet/

You should check this out.


All the best to you,


cmack
02-08-2017, 01:53 PM   #17
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Hello and welcome, Supernatural 16
Sorry you had to cancel your trip but understandable until treatment relieves the symptoms. When the right treatment is found for you , then you will feel better and it will not affect your life so much. I hope you are feeling better today. Yes, Humira injections do affect your hair growth. I was not at my hairdresser for a year as my hair stopped growing. I ony had hair thinning, mostly at the sides , as I too have thick hair like you. You may find that will be the case with you. If it helps to reduce the symptoms of Crohns then you may have to bear with it at the moment. Take advice from your Consultant and see what test results show. Best wishes.
02-08-2017, 02:11 PM   #18
cmack
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I know a few ladies that have had thinning hair including my mom. She often wears a ball cap with a ponytail. It looks good on her! and you don't notice the hair is thin. Maybe try it out for the time being and see if it looks good on you. Just a suggestion. I think Honey is right when she said,... " When the right treatment is found for you , then you will feel better and it will not affect your life so much."...

All the best,



cmack
02-08-2017, 02:17 PM   #19
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Hello and welcome, Supernatural 16
Sorry you had to cancel your trip but understandable until treatment relieves the symptoms. When the right treatment is found for you , then you will feel better and it will not affect your life so much. I hope you are feeling better today. Yes, Humira injections do affect your hair growth. I was not at my hairdresser for a year as my hair stopped growing. I ony had hair thinning, mostly at the sides , as I too have thick hair like you. You may find that will be the case with you. If it helps to reduce the symptoms of Crohns then you may have to bear with it at the moment. Take advice from your Consultant and see what test results show. Best wishes.
Yeah the hair loss is pretty bad atm but I agree if it's going to control through crohns then I suppose it's not all bad. I'm just hoping that the humira continues to work having an injection once a fortnight because my next option is gna be increasing the dosage nd that's worrying me in case the hair loss gets worse. I'm just trying not to stress about this cz I know it won't help anything. Thank you fr ur support.
02-08-2017, 02:20 PM   #20
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Supernatural16,

I know a few ladies that have had thinning hair including my mom. She often wears a ball cap with a ponytail. It looks good on her! and you don't notice the hair is thin. Maybe try it out for the time being and see if it looks good on you. Just a suggestion. I think Honey is right when she said,... " When the right treatment is found for you , then you will feel better and it will not affect your life so much."...

All the best,



cmack
Thanks for the suggestion I might try it if the hair loss gets worse ( evn tho I'm hoping otherwise ) I'm hoping it gets into remission soon it's quite depressing because everyone seems to be getting on with their lives whilst im trapped watching them hav fun. There's a summer camp that all my friends are going to in August ( fr a month ) nd I doubt I'm gna be fine to go so I'll have to cook up another excuse. Never less I'm trying to remain positive.
02-08-2017, 02:30 PM   #21
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Crohn's disease sucks. Once you get it under control things get way better though. Good for you to try staying positive! That is a good start. The more stress you have the worse everything gets. If things get to gloomy be sure to tell your family and your Doctor. There are things that can be done to help you. I have to take meds for anxiety and there is no shame in asking for a little help. Try to concentrate on all the things you still can do that are fun. If you are feeling down give me a shout. I'll see if I can help cheer you up.

cmack
02-08-2017, 02:45 PM   #22
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Hi Supernatural 16, try to do your best and have a life. It is early days, so think about going on future school trips, and you may be well enough then to do so! As treatment kicks in, and if it is the one for you, then your symptoms become less frequent. I understand you do not want everyone to know, I don't, but as long as a teacher knows who will understand when you may have to withdraw from some activities. When I do not want to explain or go into details with anyone, I just say I have a problem with my immune system and leave it at that. That is enough to say and I find people do not ask anymore,
I hope I have helped. Get well soon.
02-08-2017, 06:14 PM   #23
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Good advice Honey. Not everyone needs to know your business. I chose to go public with my troubles but that was as an adult. Kids can be really mean about things like this disease. I even had adults act like idiots to me and say "hows Yer Bum?" and laughing at me along with the whole group around me. I responded by saying "It's all a big joke till it happens to you" Everyone suddenly went silent and didn't bring it back up very often after that. I remember people being picked on, I always hated the bullies! It is always best to follow your own wants and needs in my oppinion. Privacy is a right and not to be tread upon.

Cheers,

cmack

Last edited by cmack; 02-08-2017 at 06:16 PM. Reason: added something
02-08-2017, 06:35 PM   #24
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Hi Cmack, yes I have experienced that when Crohns is not even Bowel disease but a disease of the Immune System! That is why I give the advice of not informing everyone, It is personal . It is also a fickle, hard illness to live with as symptoms vary and treatment is not standard for everyone. We each are individuals dealing with it in our own way. People can also be very dismissive when you are struggling as they do not understand the seriousness of the illness. So, do not give out too much information, it is private and personal.
02-08-2017, 06:44 PM   #25
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I learned what I needed to do. I dropped all the negative goofs that found humor in someone else' struggle like a bad habit. We don't need that kind!

Thanks for your support everybody,

cmack
02-08-2017, 06:48 PM   #26
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Oh yeah Honey I'm hanging in there! Thanks bud. Enough about me though. I'm a big strong guy, inside and out! (even big guys cry once in a while too though)

cmack

Last edited by cmack; 02-08-2017 at 06:50 PM. Reason: forgot something
02-09-2017, 03:46 AM   #27
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Hi Supernatural16, I hope you have a good day and feel better soon. Best wishes. Thinking of you.
02-09-2017, 11:16 AM   #28
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Hope you are having a good day. If not you can always vent to us on here.We understand how tough it can be.

I'm thinking of you too bud.

cmack
02-09-2017, 12:50 PM   #29
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Hi... and welcome to the forum. I have 2 daughters with Crohn's. My oldest failed quickly with Humira and is doing well on Remicade with no side affects so that might be an option for you. A one hour infusion every 8 weeks is much better then the painful Humira shots in the stomach. Good Luck.


I am not a doctor... just my thoughts
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Renee (23) dx 9/15 - Status: Feeling Good

Current Meds:
Remicade 7.5mg every 6 weeks
6MP @ 50mg /Day
Omeprazole
Vitamin D2 50000iu /Weekly (Prescription)

Supplements:
Multivitamin
Vitamin D3 1000iu /Day
Organic Apple Cider Vinegar

Failed Meds:
Humira

Gall Bladder removed 4/16

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Julia (21) dx 6/08 - Status: Remission 9yrs
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6MP @ 100mg /Day

Supplements:
Multivitamin
02-09-2017, 01:39 PM   #30
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Ricky,

Great picture! I love it!

cmack
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