How did your Crohn's begin?

[Paigey]

Hello everyone.

I am a 25 year old female. Healthy until recent issues. I guess I'm just looking for some direction!

My mom has Crohn's disease. She was diagnosed in 2000 when she had a severe blockage. She has had two surgeries.

For the last few years I have had intermittent issues. For example, for multiple days I will feel an urgent need to use the restroom but I only pass mucus. This usually lasts three or four consecutive days. This has only happened 3-4 times over the last two years but has been enough to concern me.

Things have gotten worse since April of this year. On multiple occasions, I have eaten and within 30 minutes I have intense stomach pain! I have to stop what I'm doing and this is usually followed by diarrhea. I had one of these episodes last night and my stomach has been cramping all day today. Last week after lunch I became insanely nauseous and had to leave work which is very out of character for me.

I'm starting to worry a bit and don't really know where to start. I just started a new job and I am five months postpartum. I have been hesitant to take time off my new job to see a doctor but I'm wondering if it's time. Of course I'm here, on this forum, because I'm wondering if this could be the beginning of issues similar to my mom's.

Any advice? What can I expect at the gastroenterologist? How did your IBD begin?

Thank you all so much!

 

[mtseeg]

Hi Paigey: I'm bumping your story in the hope that someone with more experience can offer some insight. I am currently in the process of being diagnosed.

I had a similar issue 10 years ago, and from what I can recall, you can expect the following from your GI:

He will ask you questions, get a stool sample, and likely recommend either a colonoscopy or an endoscopy (or both). In my case, 10 years ago, an endoscopy and CT scan were performed, which found nothing. Ten years later, I'm having similar issues and tested positive on an ASCA blood test (you can ask him/her about it).

Hope that helps.

 

[ronroush7]

Welcome. I think you need to be seen by a doctor. I agree with the above post. A few years ago, i had two different surgeries. One was for hemmrhoids. The other was for a fistula. They were taking longer than they should have. I went to a doctor who determined i have Crohn"s disease. Please keeo us updated on how you are doing.

 

[aweitzm1]

I was just recently diagnosed and can tell you it took 6 months of testing to finally get a diagnosis. Now I will admit part of that was my own fault because I went to a terrible GI doctor at first.

However, it was my primary that actually suggested I see a GI specialists because I lost 40 pounds over a year for no apparent reason. (that was the only silver lining I see in this awful disease)

I have always had stomach issues and have had multiple Colonoscopies in the past but no one thought it was Crohn's related because I didn't have all the symptoms only a couple.

I am now on steroids which is causing me to gain weight again and I start Humira as soon as the insurance approves it. Now that I have read up on the disease I felt I have had it for a while as I now realize what I was experiencing was consistent with Crohn's disease. I have constipation, indigestion and can go months without eating if I am off the steroid.

I am naturally anxious so I need to work on that as when that flares my CD flares up as well.

I hope hearing my story helps you

 

[Cross-stitch gal]

When I was first diagnosed I believe they did an emergency lower gi on me and found it. I went in immediately after finding blood coming out of my backside. And, had lost weight regularly unintentionally in the past.

In 2013 when I changed insurance all my new GI did was mostly put pressure on my tummy and he knew what I had. But, he wanted to scope me to be sure.

Best thing to do is explain your symptoms to the new doctor as best as you can. And, they'll go from there. Please keep us updated on how you're doing!

 

[aweitzm1]

Hello everyone.

I am a 25 year old female. Healthy until recent issues. I guess I'm just looking for some direction!

My mom has Crohn's disease. She was diagnosed in 2000 when she had a severe blockage. She has had two surgeries.

For the last few years I have had intermittent issues. For example, for multiple days I will feel an urgent need to use the restroom but I only pass mucus. This usually lasts three or four consecutive days. This has only happened 3-4 times over the last two years but has been enough to concern me.

Things have gotten worse since April of this year. On multiple occasions, I have eaten and within 30 minutes I have intense stomach pain! I have to stop what I'm doing and this is usually followed by diarrhea. I had one of these episodes last night and my stomach has been cramping all day today. Last week after lunch I became insanely nauseous and had to leave work which is very out of character for me.

I'm starting to worry a bit and don't really know where to start. I just started a new job and I am five months postpartum. I have been hesitant to take time off my new job to see a doctor but I'm wondering if it's time. Of course I'm here, on this forum, because I'm wondering if this could be the beginning of issues similar to my mom's.

Any advice? What can I expect at the gastroenterologist? How did your IBD begin?

Thank you all so much!

Forgot to add I also just started a new job and they have been wonderful. I was nervous like you about taking time off work. Do any doctors in your area work late? I am lucky my doctor works late on Wed. and does procedures once a month on Saturdays. I have taken advantage of all this but there have been times I had to go on my lunch break to see her as well. My job has worked with me and as long as I get my work done they are ok with me taking the time I need for my health.

If you explain your situation they may surprise you and be understanding. My company sure was.

I did lots of bloodwork and stool samples. The doctor felt it was either UC or CD but needed to do a colonoscopy and endoscopy for the exact diagnosis. From what I am told that is the only true way to officially diagnose someone because they will need to biopsy the area. The reason I did blood and stool samples first was to rule out any infection.

 

[Pug Gamer]

I had been asking for testing for 7years, then once i started getting obstructions my GP finally sent me for testing. From the refferal to GI to diagnosis was 16 months. I had endoscopy, colonoscopy, blood tests galore, stool samples, xray, mri, and the ONLY thing to show my crohns and stricture was a barium MRI. I had to go through all those tests twice because i moved and my GI was so bad he kept refusing to send my results over to my new GI, so had to have the whole lot again.
My crohns started from stress. I had multiple things happen at the same time and then this started. I was made redundant, my partner was also 2 weeks after, my mums partner had a accident and nearly died, found cancer while being treated, money stress and more. But if your mum has it, i honestly would say you could have IBD. When they send you for testing etc, insist on times you can do. I get sent 4 or 5pm apps, and ive been called to see if i could swap for earlier, which i have.
I wish you luck.

 

[TammyR]

Other than a family member having it, my story is very similar to yours. Started with urgent need diarrhoea over a number of months. I was taking Imodium to control it and then I had a massive attack and pain/nausea which was determined to be gallstones so had that removed. Problems got worse from there and I saw a GI who did a colonoscopy and then an MRI to confirm.

 

[eleanor_rigby]

From everything I have read on this forum, everyone's journies are all pretty different. For myself, I just woke up out the blue one night with horrific cramps, like waves of pain in the centre of my abdomen. They went away the next day but returned regularly until I was eventually diagnosed. Perhaps I had subtle signs before this that I never really picked up.

My opinion on your case - get tested. I think a close family history of Crohn's means any digestive symptoms always warrants testing. Even if just a fecal calproctectin test. Hopefully your GP will take you seriously and refer you right away to a GI due to your mum having Crohn's.

 

[Jabee]

Interestingly, I think my third pregnancy was one of the triggers for me. I developed severe intestinal pain and after an upper GI series found what was nearly a hole in my duodenum I was diagnosed with celiac disease. Fast forward a couple of years and I became severely anemic. A bone marrow biopsy revealed I had no iron in my body and on endoscopy my GI found severe ulcerations and a stricture in my duodenum. It's moved around my small intestine since then (my youngest is about to turn 19) and I've had to be hospitalized a few times. One important thing: only about 30% of crohn's patients have biopsies that show granulomas; unfortunately, biopsies can't rule out crohn's. Definitely go see a GI. You need to find the source of your pain and other symptoms. Let us know how you are. And congratulations on the birth of your baby!