This isn't a dream...

[Amber941]

I don't know why I am so scared, I have been dealing with complications with my BM's for so long, it doesn't even seem "normal" to not have issues.

Today, a doctor told me that she was almost certain I have Crohn's disease, and wants to sceduale a colonoscopy, to diagonose me. I was diagonosed with IBS when I was 15 years old, I am now 21.

When I was 18 years old, I lost the health insurance my parents provided for me, and also my home. I worked to get by, and without many skills and being a HS dropout, I didn't make much money. I, naively , ignored my symptoms and figured it was just a repercussion of something I had ate, or done. I really wish I would have known what my future held, would have made a lot better choices.

After my visit with the doctor, I left there not really knowing what Crohn's was. I turned to the internet to find answers, and really starting feeling overwhelmed. Although, I found this wonderful site, and a lot of information, I was also completley blindsided and confused. There is horrible, horrible experiences people have delt with, and for the first day- it was way to much for me.

FACTS:
21 years old. Female.
I have hidradenitis suppurativa (HS) and have for about 7 years.
Blood in my stool.
Family history of Crohn's.
I have had abdominal pain since I started puberty, about 12 years old.
Constant nausea.
In the last 3 months my knee on my left side, and my foot on my right side have been causing me a lot of pain when I first am starting to walk. It's increased in pain since the beginning, but I wouldn't say it is steadily getting worse.
I have had, what I believe, arthritis in my hands for about 2 years.
I have BM about 7 time a day adverage but sometimes over 15+.
I have went whole months without a solid BM, more then once.

I have a long night, and fear for going back to look for more terror stories. My question is, what is the next step. If there is anyone who might have some advice, or encouraging words, I am all for it. Just writing this has helped me calm down, and I thank anyone who took the time to read it.



Amber

 

[723crossroads]

I don't know why I am so scared, I have been dealing with complications with my BM's for so long, it doesn't even seem "normal" to not have issues.

Today, a doctor told me that she was almost certain I have Crohn's disease, and wants to sceduale a colonoscopy, to diagonose me. I was diagonosed with IBS when I was 15 years old, I am now 21.

When I was 18 years old, I lost the health insurance my parents provided for me, and also my home. I worked to get by, and without many skills and being a HS dropout, I didn't make much money. I, naively , ignored my symptoms and figured it was just a repercussion of something I had ate, or done. I really wish I would have known what my future held, would have made a lot better choices.

After my visit with the doctor, I left there not really knowing what Crohn's was. I turned to the internet to find answers, and really starting feeling overwhelmed. Although, I found this wonderful site, and a lot of information, I was also completley blindsided and confused. There is horrible, horrible experiences people have delt with, and for the first day- it was way to much for me.

FACTS:
21 years old. Female.
I have hidradenitis suppurativa (HS) and have for about 7 years.
Blood in my stool.
Family history of Crohn's.
In the last 3 months my knee on my left side, and my foot on my right side have been causing me a lot of pain when I first am starting to walk. It's increased in pain since the beginning, but I wouldn't say it is steadily getting worse.
I have had, what I believe, arthritis in my hands for about 2 years.
I have BM about 7 time a day adverage but sometimes over 15+.
I have went whole months without a solid BM, more then once.

I have a long night, and fear for going back to look for more terror stories. My question is, what is the next step. If there is anyone who might have some advice, or encouraging words, I am all for it. Just writing this has helped me calm down, and I thank anyone who took the time to read it.



Amber

Hi Amber,
I was diagnosed a year ago and am not on any heavy duty meds. Just something called cholesterymine. You pour it in water and mix it and drink it one to two times a day. It honestly stopped the diarrhea for me completely. As long as I take it, I'm fine. As soon as I stop it comes back. Ask your Dr. if you can try it. It isn't fiber. It's better. OK? Hope this helps. Teresa

 

[723crossroads]

It is by prescription only too. I don't know how much it costs because my insurance covers it. They probably won't give it to you till you have the colonoscopy. They don't hurt at all. The prep is the hardest part. But, you are asleep for it, so don't be scared. That is the only way they can see your colon.
If nothing shows up there, they may check your small intestines with a pillcam or they now have a new catscan that can see inside your intestine. I may get that one soon. Teresa

 

[Amber941]

Thank you so much. Even if my doctor doesn't think it will help, just having someone put other options on the table, is a huge help for me. I appreciate it more then you know, and plan to go read up on it right now! Thank you, and happy health!

 

[723crossroads]

Thank you so much. Even if my doctor doesn't think it will help, just having someone put other options on the table, is a huge help for me. I appreciate it more then you know, and plan to go read up on it right now! Thank you, and happy health!

No problem. Just so you know it was originally used for people with high cholesteral and it takes that fat out by forming a bulk in the intestines and passing thru instead of absorbing it. But, they discovered how well it worked for crohn's patients in forming a stool, they started using it for that. The non generic name is Questrin I believe. Anytime you want to talk, just send me a message. Click on my picture and it will go to my own personal sight and leave me a message. You can private message me too on there if you don't want others seeing it. Teresa

 

[723crossroads]

Amber, Go to healingwell.com and type in cholesterymine for diarrhea and read all the sucess stories on there about how well itworks for everyone with crohns. No matter if they have had surgery or what else they have tried. It saved their lives!!! Teresa

 

[EthanPSU]

Hey Amber, I can relate somewhat being young and having to deal with this dumb disease. I've had two colonoscopys so far and both have been beneficial in helping me get better. I hope you start feeling better and get everything under control. This forum is a great place to just talk to people who you can relate with. Anyways welcome!

 

[Lucidor]

I can kinda relate to what you're talking about. I was diagnosed when I was 20 and didn't really think much about it when I got the nod (partly since I'd been in hospital for two weeks, hadn't eaten anything solid in three weeks, and thus only obsessed about food 24-7; if I could've enrolled in chef school via the hospital internet, my food-deprived mind sure would have forced me to).

Then it all sank in, and there's no denying it: it feels **** getting ill when you're this young, and you start wondering what the hell you've done to deserve it. What I've learned is that you can only curse at the cosmos for so long though, and in the end it doesn't get you anywhere. The way I see it is that if life's throwing this at me, I can either be sad, or be angry. Sad that I'll spend the rest of my life pondering the contents of my gut, or angry that it might constrict my life choices.

It might sound like life coach fluff, but it's an attitude that works for me. As long as I stay at least a little bit angry at the universe, I get out of bed a bit quicker when I feel like ****, I lift a little heavier weights at the gym, I stay a little longer at the library and I enjoy every complications-free meal in a whole other way.

Now, I don't know whether this helps for you, but rest assured that you're not alone, and whereas there's always gonna be dark days, there's gonna be good one's too. :wink: Welcome to the forum.

 

[SkinnyNinny]

Hi, that Hidradentitis must suck. To have Crohn's on top of that...well I guess we're gifted.

Have you been tested for celiac disease? Regardless, try cutting out gluten. I am just starting that now, it seems like a no-brainer now that I am reading up on it more - the doctors never suggested to me. They also don't think food has any influence either. Well, I'm trying whatever might help, and I've heard from people with gluten intolerances whose lives have changed from making that move.

Also, the doctors shouldn't rely just on a colonoscopy to diagnose, it's just your colon being looked at. My opinion, since most of my disease has been located in my small intestine - a few times I was complaining of pain/bowel obstructions and they would just do a colonoscopy and not find anything.

Good luck! It's not the end of the world, some people have it much worse. As they say, Crohn's is just a word, not a sentence.