Crohn's Disease Forum » Your Story » First GI app. on July 22


06-28-2010, 10:27 PM   #1
Rusty
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First GI app. on July 22

Hi,
Wow! What a great site. It's great to see everyone come together and share their stories and help each other.

Here's my story.
According to my parents, They brought me home at 5 days old from the hospital (I was adopted, So no family medical history) and 3 days later (8 days old) I had not had a bm. The hospital said it's ok, that normal for some people.
Well, As a child I would have a bm only once maybe twice a week if I was lucky. Then I would plug the toilet, probable caused by using lots of TP trying to wipe clean. But they were VERY larger bm's when I did go. I would also have accidents all the time, Just had no control and would go in pants. I guess I figured out how to hide it from my parents when I was 9 or 10 because that's the lasts my dad remember of the accidents. But they did go on until I was 13 - 14 from what I can remember, But only a couple of times in the past. 5 years.
So growing up I thought this was normal. I am now 37
Recently a friend was dx with crohns and was telling me about what she was going through and a lot of the symptoms sounded very familiar to me. For at least the past 10 - 20 years diarrhea has been added.
I seem to go through all 3 ranges.
Constipation, 12 days is the longest that I can remember for sure by dates, But I think there have been a couple of longer one.
Diarrhea, explosive liquid. Like opening a tap sometimes just brown water or it maybe thicker. Also get heavy night sweats, So far with diarrhea but just started making noted of what my body is doing and when.
And sometimes I seem normal, once a day, little to wipe, no pains, no gas (my gas could kill a skunk it is so bad at times).

This feels GREAT writing this out. It is some thing that I have hidden for 37 years. Never talked to anyone about it and it has affected my life in so many ways. Thank you all.

Question
I also get what I have always thought were ingrown hairs on the inside on my thigh. They get to be about the size of a dime and will pop (sometimes with the help of a pin) and leak a bloody milky gloo. When they stop leaking the skin around the area in hard and swollen and will take a couple of months to heal and go away.
Could these possible be abscesses? Any thought would be welcome.
I also have lots of red bumps/pimples on my inside thighs.

Thanks.
06-29-2010, 05:21 AM   #2
Cat-a-Tonic
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Hi Rusty, welcome to the forum. When you say your first GI appointment is next month, does that mean you don't have an official diagnosis yet? If so, welcome to the club. I have been ill for close to a year now. I'm having a CT scan this afternoon to see what can be seen, as my colonoscopy didn't show anything. If you aren't diagnosed yet and your GI doesn't diagnose you right away, don't give up hope - sometimes these things take quite awhile to diagnose.

As for your other question about the things on your legs, I cannot answer that one, but I'm sure someone else can. Welcome again and good luck with your GI appointment!
06-29-2010, 07:12 AM   #3
Rusty
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Hi Cat,
Yes you are correct, No diagnosis yet. My GP said that it sounds like IBS and refereed me to the GI specialist and my first app. is July 22.
Good luck with your CT scan, I hope it helps you get some answers and yes I won't give up hope if it takes awhile. I know something is not right and will push to find out what. 37 years has been fun, But it's time for some help.
06-29-2010, 07:18 AM   #4
Crohn's 35
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Rusty! You are one of us now and glad you are here, we learn from each other and support one another in the good times and bad. Wow having symptoms that young! That must of always seemed normal to you.

Crohns can make you either have diahreah or constipation. No two of us are exactly alike in our flares and symptoms. As for your question about a possible abcess? It could be but that has never happened to me. Someone my see this an comment.

Let us know what your appt results are, welcome aboard!
06-29-2010, 07:36 AM   #5
Rusty
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Hi Jettalady,
Yes it has always been normal for me not to be normal.
My mother says that she would mention it to the doctor but they always told her not to worry and that it was normal when I was a child. Since then I have never mentioned it to my GP because it was just something I had gotten use to and have always been embarrassed to talk about to anyone.
Last month when my friend was dx'd and I started to do my own research I finally went to my GP with a 2 page short story of my life. The only question he had was is there any blood. Told him no and he ordered blood work and a stool sample which have been done but I have not heard from him. I guess I will find out the results when I see the GI.

Thanks for the welcome and as bad as it sounds I am glad I am not alone with this, That other people can understand what it is like. My mom is now telling me to eat better and that will help. I just ask her if it helped when I was a child since she was feeding me then and I had issues. I don't mean to be rude with her. It's just that some people don't get it, That even healthy food can set you off.

WOW actually feel good to talk about this.
06-29-2010, 07:42 AM   #6
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Hey Rusty, always listen to your mom cause they are always right? I noticed you are from Utopia,Ontario, I know all of Ontario and never heard of that area. Where are you located?

You should never hold in your feelings, it is stress and stress is a no no for us Crohnies, life is stress enough,and if you have friends who dont understand that is ok. You can tell us anything here, nothing is tmi or questions. WE understand!!!
06-29-2010, 07:54 AM   #7
Cat-a-Tonic
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Rusty, I think most if not all of us here understand what you mean when you talk about how your mother thinks it's just a food issue. Our families try, but they cannot understand. My mother has some celiac disease in her family, and even though my biopsies tested negative for celiac and even though bread & pasta are some of my "safe" foods, she still is convinced that I should go gluten-free and that will help or even cure me. I've even had one family member tell me I'm psychosomatic and "not really that sick"! So this forum is so wonderful for the support and understanding that most of us just can't get from our families. Glad you found us.

Don't let your doctor tell you it's IBS without doing tests - I think most of us here have heard "oh, it's just IBS, try avoiding stress" from at least one doctor. I just had that experience myself a couple of weeks ago (both my GI and GP were booked up and I was having a flare, so I had to go to a different GP who was very condescending and not a very good doctor!). So make sure to ask for more tests if they try to "write you off" with an IBS diagnosis if they don't find anything on the blood or stool tests. If you do have IBD, it can be tricky to diagnose and the blood & stool tests aren't always very accurate. Good luck again!
06-29-2010, 07:58 AM   #8
Rusty
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Hey Jetta,
Utopia is a little village just south of hwy 90, 5 mins west of Barrie. I don't live in the village, But in the country just outside. Love the country good for low stress. Grow up in Toronto, Etobicoke and when I was 25 I moved to the country and will never go back.
I have noticed that when I do get stressed I have more issues. So I try an live a relaxed life as much as possible.
As for talking about my issue. That is why I love this site. People are open and can talk about anything even the not so pleasant parts.
06-29-2010, 08:05 AM   #9
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Thanks Rusty, I know where it is now, I used to have a cottage just East of Peterborough, and I too grew up in Etobicoke, then Brampton..like you went to the country and never will go back. Peaceful most times.

Welcome again!
06-29-2010, 08:09 AM   #10
Rusty
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Hey Cat,
Ya I am glad I found this site to.
I have heard that the blood and stool test can both look okay. They did for my friend and she had more test done to get the dx. My friend also told me that St. Joesph Hospital in Toronto has the best GI specialist in the area and that is where I am having my appointment so hopefully I won't have to push (I push enough when I am on the toilet )to have some scope work done.
Does anyone know if they would still see anything with scope if I was not in a flare up. I am guessing that they could still see something.
06-29-2010, 08:33 AM   #11
Cat-a-Tonic
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Colonoscopy has a good chance of seeing something, but it's not guaranteed. My scope and biopsies came back normal. That doesn't mean I'm not sick - likely they missed the right spots to biopsy and either my disease is higher up in the small intestine where the scope couldn't go, or I just don't have enough damage yet for it to be visible on scope, something like that. If you've been ill for 30+ years then I would think that the scope would most likely find scarring and other evidence of disease in you, even if you're not flaring.
06-29-2010, 04:15 PM   #12
Astra
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Hi Rusty
and welcome

glad to have you here, lots of friends here for you, and it's good to talk! let it all out!
I have a long boring story about IBS! you'll have to search my posts, but basically I was told I had it for over 15 years, and in all that time, I was scaring from the inflammation, and without meds. I was in agony, and my GP wouldn't refer me, I was told I was depressed yada yada yada
I've researched IBS, and yeah, ok, maybe it does exist, but from what I've read, it's stress induced, and hun, I wanna ask you, how stressed were you as a little biddy baby? ha ha and how many fags did you smoke? oh, and how many Macky Ds did you gobble down whilst in your pram?
hope you find a good gastro, one who'll listen to you, cos GPs are not specialists in IBD, they just fob you off with IBS!
Cynical? Moi?
good luck and lotsa luv
Joan xxx
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BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

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06-29-2010, 04:23 PM   #13
Astra
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Oh and Rusty

check out the thread by ibdoer (29/6/10) called
'does anyone know what this bump on my leg is'
it has a photo attached, and sounds like your lumps
06-29-2010, 09:18 PM   #14
Rusty
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Hey Joan,
Thanks for the welcome. I will search for your thread on IBS.
I will defiantly push the GI doctor for more test if I need to. It may sound weird but I actually want a scope, I am sure they will see something. I know something I wrong and yes you are right about being a baby and having issue.
I seem to have it under control due to self medicating since I was 16, About 2 years ago I stops for 4 months and it was hell. So I started medicating again.
Do you know who I have to talk to to gain access to the lounge forum? I would like to read other people experience with self medicating.
Thanks for the info about the other thread. I posted a couple of pics myself on that thread.
06-29-2010, 10:11 PM   #15
Crohn's 35
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Hi Rusty , for access to the lounge -zone you need to have 50 posts before you can go in. Dingbat is our admin or Nancylee to gain access.
06-30-2010, 04:35 PM   #16
Rusty
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Thanks Jetta,
I will keep am eye on my post count and message 1 of the 2 people you mentioned.
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