hello everyone

[twentyonesyds]

I’m 20 years old and was kind of diagnosed with crohns when i was 16/17. I never had stomach or bathroom issues until the summer i was turning 17. I was going on vacation and all of the sudden started having tons of blood in my stool and flew back home to see a GI there. They admitted me and did scopes & everything, to which they said id need surgery as part of my bowel was dying. So i got a resection and was put on mesalamine and omerprazole at the time. They tested me for crohns and ulcerative colitis and didn’t really have any answers or conclusions to give me. Since then i’ve had flare ups and have been put on prednisone in order to calm my gut back down. I’m in another flare again, which is why i’ve decided to join the forum as it makes me very tired physically and mentally. Very frustrating not knowing what to do as I don’t seem to have an official diagnosis, although my doctor always calls it crohns. Probably doesn’t help that i’ve had 3 different gi doctors in the past 3/4 years.

 

[twentyonesyds]

To Update, I saw my new doctor last week and got a colonoscopy and pill cam scheduled for april 17 to hopefully obtain a diagnosis. They also did an IBD panel where apparently my results were normal, which is extremely frustrating as I have been flaring up for over a month now and am being told my tests look like i’m fine. I’ve had mucus and blood in my stool and I’ve either been constipated or having diarrhea and there’s been no in between. My abdomen hurts every time i eat and before and after I go to the bathroom. I don’t know what to do really, i’ve researched about my symptoms and the symptoms such as a neuroendocrine tumor and the bowel i had that was dying, and cannot find anything definitive… which makes sense since i am not a doctor and have no real way of knowing what everything means, but it’s so aggravating to have no answers. It also sucks so bad to have to just suffer and wait until they can get me in for my scopes in over a month.

 

[momsa]

I understand that you've researched about your symptoms because you are waiting so long for answers, but as you said, you are not a doctor, and as you know, you can find scary things on the web that might seem to fit perfectly even when they really might not be what you have.
I would love for you to be able to get in to your doctor sooner so you don't have to sit there and suffer. If you haven't already, you might call your doctor's office and explain how uncomfortable your symptoms are - that it hurts when you eat, etc. My advice is to not minimize your symptoms in any way when you call the office and ask if they have any urgent appointments available, since a month and a half is a long time to be so uncomfortable.

 

[twentyonesyds]

I understand that you've researched about your symptoms because you are waiting so long for answers, but as you said, you are not a doctor, and as you know, you can find scary things on the web that might seem to fit perfectly even when they really might not be what you have.
I would love for you to be able to get in to your doctor sooner so you don't have to sit there and suffer. If you haven't already, you might call your doctor's office and explain how uncomfortable your symptoms are - that it hurts when you eat, etc. My advice is to not minimize your symptoms in any way when you call the office and ask if they have any urgent appointments available, since a month and a half is a long time to be so uncomfortable.

Sadly my doctors office will not return my phone calls, Ive called twice and leave two voicemails, one to their nurse line and one to the appointment line trying to get them to see me or at least talk to me about what’s going on. Super annoying that they have no one answering phones anymore and everything goes straight to voicemails now

 

[Scipio]

Sounds like it might be time to think about getting a new doctor.

 

[twentyonesyds]

My doctor saw me on Friday and had me do a stool sample which i turned in that day. I’ve been miserably waiting to hear back results on it and see what else will be done.. I’ve had to put in a LOA at work due to this flare up. My doctor seems to think I could have c diff, but is not certain. They started me on probiotics for now and i am still on vitamin d, omeprazole, and mesalamine.. however none have helped too much. The probiotics seem to hold me off from going to the bathroom as much within a few hours of taking them, but then it starts back up again. Going to the bathroom this much is exhausting as anyone who has experienced this knows, i’ve gotten heating pads to use because that’s the only thing that helps with my stomach cramps and i have also had to get a cream to help with rawness due to going to the bathroom so often. i’m trying to stay hydrated but it’s hard when i’m going to the bathroom about 10 times a day and waking up during the night to go even more

 

[twentyonesyds]

I have now been sent to the ER and was told by my doctor (who is on call today) that they will admit me today. So i’m hoping for some real fix to all these issues soon

 

[momsa]

So glad to hear. Thanks for letting us know.

 

[twentyonesyds]

I’ve pretty much just been on fluids and am having colonoscopy/endoscopy wednesday. Very nice to have pain meds here that actually help, unlike at home. my inflammation levels are elevated, but my ct was normal during my ER visit. i’m staying overnight until my scopes and biopsies are done at least. really hoping for answers this time and a solution

 

[twentyonesyds]

I have been diagnosed. Colon crohns is my diagnosis after the scopes. Waiting for biopsies still & pill cam results…. but i am excited to start real treatment soon. it has been a long journey and i know it’ll continue, but i’m relieved to finally have answers and possible solutions.

they found ulcers in all parts of my colon as well as inflammation. everywhere else has been clear so far. (still waiting on pill cam pics of small intestine)

for some reason i woke up sobbing from pain after my scopes, which has never happened before… but the nurses gave me pain meds & i’m feeling better now. that is all i have to update thus far.

 

[Scipio]

It's Good news/Bad news. Having Crohn's disease is never good news, but at least you now have a much more certain path forward. And the further good news is there are many more effective treatments for Crohn's available now than there were 10 or even 5 years ago and more coming on line in the future.

The task for you and your doctor now is to find the right combination of medication, diet, and lifestyle that will get you into a durable remission and keep you there.

 

[twentyonesyds]

I am starting my first remicade infusion tonight while still at the hospital. I’m very nervous but hoping it all goes well. I am also being put on steroids once I am discharged to help my symptoms.

I have been relieved and distraught after my diagnosis. Relieved to have clarity, and very emotional and upset to have such a tough disease that can come and go.

I’m not very surprised because I figured it was crohns from having my last hospital visit 4 years ago, as well as many flares over those years. This has definitely been the worst once since my very first flare up…

I obviously have no clue how quick remicade is going to work for me, which makes it hard to know when to let my job know I can return to work; I guess I just have to play it by ear.

This forum has definitely helped me to understand what my doctor has explained to me about different treatment options and everything. It also has helped me feel less alone throughout this. No one in my personal life really understands what this disease is like to go through, i know they care and worry, but it’s hard when you can’t really talk to anyone about it.
I also feel as though I have had to hold very strong and put up a front for my parents and family to keep them less stressed and worried about it all. Which kind of sucks since I am terrified and absolutely heartbroken by everything regarding having this illness.
A lot of the people in my life don’t realize the difference between a chronic illness and being sore from like a hike or something… anytime i complain about hurting or aching all over, my boyfriend really likes to compare it to his legs hurting from walking at work. (We both work retail,so i know where he’s coming from, but it just makes me feel unseen)
My struggle is usually ignored by everyone until it gets to this point where i’m at the hospital for a week or weeks.
I know it is hard on loved ones too, I just wish they gave me more verbal support and listened better
I kind of went off on a tangent, but anyways, first infusion tonight.. wish me luck !

 

[twentyonesyds]

Infusion went great, so I got to go home last night!

 

[momsa]

Terrific!