Probable Crohn's is a big surprise.

[Saralr]

Hi. I was diagnosed with IBS about 15 years ago. Probably a little longer. First I started getting sick from dairy and I was told I was lactose intolerant. No tests, just a diagnosis. Well that started getting better but I was cramping when I went to the bathroom still. My doctor then decided I had IBS. I accepted that for awhile, but then decided to switch doctors. She was diagnosing me without ever doing any tests.

My current doctor never questioned the diagnosis. My symptoms came and went as time passed. And they changed too. There was always cramping when i was having symptoms but sometimes my stools came daily and sometimes more or less often. The consistency changed too. I had a colonoscopy in 2008 and everything was fine so I was given meds for IBS. I didn't poo for over a week so i stopped the meds. Next day i went like crazy. So I stayed off the meds.

About a year ago i started getting mucusy stools. And i would get that everytime I passed gas. The PA told me to take probiotics. It kept getting worse and I thought it was from stress. My doctor was busy so I was sent to another doctor. She did blood and stool tests. I was told I had an inflammation but then it was dropped. I waited until my doctor was free and went to see him. The last doctor had wanted me to have a colonoscopy but no one had told me. My current doctor decided to try the meds for IBS that I was on in 2008 even though I informed him they didn't work last time.

This time they gave me blurry vision. He wanted me to try them one at a time so I knew which one was the problem. If they didn't work he would refer me to a GI. I tried the first and had the same problem. My eyesight wasn't completely to normal so I refused to try the second one again. My doctor said that was fine and I could try cutting out meat and dairy. I wasn't getting a referral without trying that last med again. I decided to switch doctors but before I could I started bleeding. I called and was told it's probably hemorrhoids and I should come in. I informed the nurse that I've been having problems for a year and I have no other symptoms of hemorrhoids. She insisted it was the only thing that made sense. So I insisted I wanted a referral.

I saw the GI doctor for about 5 minutes before she told me it was not IBS. IBS doesn't change. She did some tests for celiac and scheduled me for upper and lower GI tests. The doctor that did them showed me pictures and said it looked like early Crohn's. Big surprise to me. After looking at the symptoms more, I get some thinks that I didn't even know were related. My husband says not to worry until the biopsy results are back but the doctor seemed pretty sure.

It's just a surprise. Last thing I was expecting. Luckily all my symptoms have been tolerable, but reading about it just confuses me. I don't know if I should be relieved to possibly have a diagnosis or be upset with what I have. :-/

It's just been an overwhelming week so far. I meet with my GI again next Monday. Not sure what to do to keep things under control until then.

Anyway, that's my story so far. Just needed some people to share with that aren't going to blow me off or act like my life is over.

 

[valleysangel92]

Hello! Welcome to the forum! I'm sorry to hear that your doctors messed you about so much, unfortunately, many doctors will jump to the IBS conclusion, often without proper testing or paying proper attenion to the patients symptoms.

It is often confusing when we are diagnosed with a chronic health condition, and it's common to have such mixed feelings.

It's very easy to say to wait for biopsy results, and they still may show something else, but what you describe sounds very like crohns, so there's nothing wrong with being prepared.

The important point is that when you have a diagnosis, you can make a treatment plan, you can discuss medications etc and work out how to get this thing under control. If it is crohns, then yes, it is currently incurable, so yes, you will have it long term. However, you CAN control it, you CAN go into remission (no clinical signs of inflammation and vast improvement in symptoms) . This is not the end of your life, you can lead a full, happy life with this condition, there are new treatments appearing all the time, New ways to improve remission rates, and they are constantly working to find a cure.

If you have any questions or want help with anything, please ask, everyone here is really supportive and we will always take you seriously . We're here to listen and not to judge .

Edit - I just saw you saying about keeping things under control until your appointment..

For bloating and nausea, you could try some peppermint and/or ginger, peppermint can also be good for cramps. Heat packs are amazing for tummy and joint pains, or just a nice hot bath.

You could try keeping a diary of your symptoms, recording what they are, how severe they are, what you've eaten or if your stressed etc to see if there are any relationships between these things. Be careful with this though, sometimes it isn't what we eat that causes difficulties, sometimes it is just eating, so it's important to try the food a couple of Times (unless you get an obvious severe reaction) in order to see if there is actually a link.

 

[pink&green]

Hello Sarair and :welcome: glad you found the forum there is lots of support and advice on here so don't hesitate to ask. sorry you are having a hard time sending :ghug: your way. Are you crrently taking any medicine for your Crohn's? If not make sure your discuss maintenance medicine with your GI. Please let us know how your Dr visit goes next week and don't forget if you have question don't be afraid to ask.

 

[Saralr]

Thanks for the welcomes and the advice for making it through this week. It is such a relief to talk about it a little without people thinking I'm making too big of a deal over this.

I'm not on any medication yet for Crohn's because the GI wanted to wait for the biopsy just to 100% sure, but he seemed pretty confident it was Crohn's. I know other people who see him and he really seems to know his stuff.

I know drinking milk makes it worse. Not the cramping but I get... splatters when I get gassy after drinking milk. The smart part of me says stay away from dairy but the weak part says "eat as much dairy as you can before the doctor tells you to stop." It's so hard to listen to the smart part. Especially when ice cream is involved.