I'm so stressed out I need people to talk to i guess...

[HeatherBeather]

Since I was 5 years old I've been suffering. Bouts of diarrhea and constipation. Blood in my stool. Being underweight, and the pain oh god the pain. I remember being 8 crying on the toilet to my mom begging for help and asking why I wasn't like everyone else. 20 years and 7 doctors later I was finally diagnosed. For years I had doctors telling me I was fine, I've had more colonoscopies than I can count. They all came back negative. One doctor handed me a card for a physiologist!! Recently it's gotten bad I started dropping weight I'm down to 93 lbs and I'm 5 foot 6 . The other night I was in so much pain and I had alot of blood in my stool. I went to the hospital they gave me the good stuff for my pain and they did a scan. My ileum was extremely inflamed. When he came in the first thing he said to me as I was holding my finace's hand was.. Have you ever heard of crohns?? I just started to cry so did he so did my mom. In a way I was happy. I mean this is 20 years being told I was fine even crazy. I was also told its just IBS. I go to a new specialist this week I'm terrified of what's to come. I read about people losing there colons and having to get a bag. That's my biggest fear. Im just scared and I feel alone even though i have the support of my family and fiancé . I feel like no one understands. I've even lost jobs over this and I feel like I may lose my current one. I call out a lot and when I'm there I might as well not me because a lot of days are spent in the bathroom. Well I hope I can make some friends here. : ) I just want to feel better mentally at least. I like this icon it describes how I feel oo:

 

[Jim (POPS)]

Heather,
Welcome to the forum. I'm sorry you have been going through all this for so long.

You have found the best place there is for crohns support.

There is no need for you to get freaked out right now. Stress is not a good thing for crohns. I would try to learn as much as you can about crohns.

I find the chatroom here a great form of support. I hope to see you there soon.

Jim (Pops)

 

[HeatherBeather]

Thanks! Nice meeting you too! Oh and I meant psychologist not physiologist haha

 

[Jennifer]

Hi HeatherBeather and welcome to the forum!

I'm glad you finally got an answer to what has been causing your symptoms all this time. I'm not glad its Crohn's but at least its treatable.

My biggest fear has always been a stoma as well since my diagnosis 22 years ago. After being a member of the forum and meeting people who do have a stoma I don't fear it anymore. I still don't have one after all these years and have been in remission for the past 14 years after my bowel resection (only had 8 inches removed). I encourage you to check out other people's success stories on how they've gone into and maintained remission here: http://www.crohnsforum.com/forumdisplay.php?f=72

Its not a death sentence and with proper treatment you can go into remission and start feeling like yourself again. I hope your appointment goes well and please keep us posted on how it goes. If you have any questions we're here for you anytime.

 

[alex_chris]

Hi Heather, it's really bad to have had sympthoms for so long but no doc to correctly diagnose you. Now that you know you can finally start getting it under control through all the things that you can read up on here, from the right diet to vitamin therapy to stress relief, sport and of course also meds - and trust me, you can get it under control and live sympthom free.

I hope you now have or find a good GI who will help you treat your current inflammation (normally with a corticosteroid drug) and then go for a long term Crohn management via immunosuppressives or if those don't work biologics.

At your low weight I would also ask your doc for supplemental high calorie nutrition (liquids, neutal flavor) to start get your weight up.

And don't worry about any worst case scenaries like surgery or bags right now, so many people go into remission and live a good normal live without any surgery or other problems. What you want is to get pain and problem free and now that you have a diagnosis, you can start working towards it with a good GI. So actually that is the start of a much better life.

 

[lizbeth]

Hi HeatherBeather, welcome to this amazing forum. I was diagnosed just over 4 months ago and found it very overwhelming, I can completey understand your fears, my GI is considering imuran or possibly surgery which I find very daunting. Now that you have a diagnosis you can learn about the condition and be able to work towards getting well again.

This forum has been a God send for me, I don't feel so isolated and have made wonderful friends and been given a lot of support. You will find many wonderful people here who understand what you are going through. Good luck for your appointment, come back and let us know how you get on.

 

[yc_angel]

Welcome to this Forum HeatherBeather,

I'm a noob myself having been diagnosed in january of this year...
I'm also on my search for meds but reading up on stories here on the forum have given me hope. Everything can seem overwhelming and it will still be like that once in a while.

Try the nutricinal drinks alex was talking about....i'm on them and they have helped me slow down the weightloss and help me get some of the nutrients i need to keep going foward.

Good luck with the GI this week....and i hope you get started on your meds regiment asap to help you feel better..:rosette2:

Xx

 

[bunnyceleste]

hey heather! Im always baffled when people have crazy stories about living with this disease for years and years before being diagnosed and treated! so sorry for your 20 years of pain and confusion I was diagnosed at 14, deathly ill with all the crohns fun (bleeding, diarrhoea, ulcers, vomiting, fainting ect) I was pretty much diagnosed on my first visit to a doc! then it was made official when he sent me to my first GI specialist. anyway, just wanted to say I understand the frusturation ect in being written off as having psychiatric problems and not a GI disease- when I was 14, at 5'3" and 82lbs hair falling out and fainting everywhere the dr said "well it looks like crohns or anorexia" and Im pretty sure everyone in my high school just thought I was anorexic. really frustrating. not to say anorexia is not a legit distressing problem but they are just veeeeeery different conditions, only similarity is the deathly skinny part in my opinion. anyways, do lots of reading and have your questions figured out before you go to your specialist. sometimes they can be bossy and make you feel very small and forget your questions. surgery can be effective but its not your first and only option! I highly suggest doing some reading/exploring about dietary changes, as lots of people (myself included) have success managing their symptoms by being mindful and deliberate with what they do and do not eat (also I undestand there are times with crohns when you cant eat anything). anyways, my main breakthroughs were eliminating cow dairy (eventually I figured out I can tolerate butter and goat yogurt) and gluten (anything made of wheat) - eliminating these things entirely cured me of extreme diarrheah and bloating. if you are experiencing extreme active disease stick to hydrating with water and herbal tea, fresh veggie juices if you can access and real chicken broth, soft whole plant based foods like squash and sweet potato and avacado . oh, coconut water is great for the sick times too- just plain pure coconut water not flavored or powdered. good luck girl!

 

[Lustforlife]

Hi Heather - glad to see you here, but sorry you had to find us. I'm heartbroken hearing all the terrible time you've gone through for so long - but I'm also happy for you. Now that you've been diagnosed, you can get treatment, and you WILL feel better! It could take some time, but take it day by day and you will get there.

 

[HisQueen99]

Hello Heather and welcome.

My story is allot like yours, although I was 15 when I first really started noticing that something wasn't right. At 19 I was told I had IBS. Then around age 25 found out I had fibromyalgia. So for another 5 years I dealt with the classic crohns problems. Until it had gotten so bad I couldn't eat very often, never left my house because of pain and the fact that I couldn't control my bowels allot of the time. After demanding a colonoscopy from my then 12th doctor, my wish was granted. And the age 30 I got my colonoscopy and new from then that it was indeed crohns. My crohns is all located in the last foot an a half of my large bowel. It was scary to find out but reassuring also because I had reason for being sick. It wasn't all in my head. I've yet to hit remission and I'm currently on remicade ever 6 weeks but after signing up on this forum, I feel positive towards my life, health and happiness. Anything is possible and for the first time in now 17 years I feel like I can have a "normal" life. I encourage you to read the success story's on this website. I had no clue that people could be in remission for so long.