New diagnosis...anyone with similar path? Very overwhelmed!

Hi everyone! I am a 23 year old female with a family history of UC, and after years of being sick, I just was diagnosed with small bowel Crohn's. I've had flare ups since age 7, with doctors writing it off at IBS and Chronic Fatigue Syndrome. Since July of last year, so almost a year, I've been having a pretty rough flare up with weight loss from 135lbs to 115lbs in a few months. I never exercise (ha!) so this was totally from my stomach issues, both constant diarrhea and lack of appetite with nausea. For me, the diarrhea has always been controllable with Imodium in dire situations, but nausea is really my most invasive symptom. I have nausea "attacks" at times where I feel like I'm about to vomit, and never do, but I also just have constant severe nausea. I take Zofran twice a day when I have to go to clinicals/school (I'm a grad student), and it takes the edge off, but doesn't do much. I also use Peppermint Oil and peppermint and ginger tea. I have abdominal pain, but I had abdominal surgery years ago for an umbilical abscess following an appendectomy, and compared to that, all abdominal pain seems like nothing. I also have a history of fissures, and had a peri-anal fistula with skin tag in 2015 that I had surgery for.

I went through a series of tests from January-June (now), and showed clear colonoscopy, clear MRI, but elevated fecal calprotectin and elevated fecal fat content. I am also deficient in vitamins B12 and D. My blood work for all other inflammation markers was normal. Finally, I did a capsule endoscopy a month ago that showed ulcers all throughout my proximal, distal, and terminal ileum. about 15 total were seen, all nonbleeding. I also have an abscess in there, and I have no idea what that means. I just had a colonoscopy yesterday because I could not start treatment without a tissue diagnosis, and they were able to get far enough into my small intestine to get biopsies of the ulcers, so now I'm just waiting for treatment. My doctor said he believes it's a mild Crohn's, but that we'll need a more aggressive treatment because I have been sick for so long without any treatment.

Has anyone had a similar path? I am feeling a bit overwhelmed, and I've been waiting for treatment for so long, I just have no idea what the best option will be or what the road ahead looks like. I've been trying a low residue diet to help, and that's been great. Previously, the doctor put me on the low FODMAP diet when she believed it was IBS, and that made me even more sick.

Thanks, in advance, for your help and guidance!

Hi Cwojo,

Welcome to HW. You've come to a great place for support, and will get a lot of answers here.

You are presenting as a very typical case, albeit considering you haven't had any treatment as of yet, it does seem you're presenting on the mild to moderate side.

The biopsies from your most recent colonoscopy will very likely confirm the diagnosis. I'm glad your GI is recommending an agressive treatment plan, as many that end up under medicated, end up with the disease progressing and doing a lot of, damage. He's probably going to recommend Remicade, which I think would be a very good option for you. Especially considering that you've had a fistula and a current abscess.

I'm surprised that they haven't started with a round of Prednisone just to get things under control quickly. Prednisone is now considered a very harsh drug, but since you haven't had it previously, might be a good one time thing.

Stay with the low residue diet for now, for at least as long as you have inflammation showing. That will help. Not sure why you're battling so much nausea.

The good news for you is, you don't seem to be a severe case, and Crohn's treatment has progressed massively in the last 10 years with the use of anti-TNF drugs. They sounded really scary when they first came out as well, but are the state of the art treatment now, and many, many Crohn's patients are having tremendous success while on these medications for 10+ years.

Good luck, hope you're feeling better soon, and keep posting your updates.

Your Crohn's doesn't sound all that mild if you have 15 ulcers throughout your entire terminal ileum. Welcome to HW btw. I hope you and your doc come up with a good treatment plan. Given your young age, and weight loss and symptoms, I think you might do best with the "top down" approach starting with biologics. When you get aggressive treatment early, you might successfully avoid surgery and complications. Sorry you are going through this, but ask any questions that we might help with.

It may not be considered full-blown Crohn's at this point, but it would probably be beneficial if your doctor treated you more aggressively, especially with your family history. Maybe taking 6MP, Lialda, or another oral drug, since you are so young, and biologics are usually a last-resort treatment. Good luck, and keep us posted.

Well, apparently we were all wrong. Someone please help! The doctor just called and said after consulting with IBD colleagues, they think it's just IBS now and that my 15+ ulcers were caused by taking less than 2 tablets of ibuprofen a month. I am totally frustrated. It's not like I want to have IBD, but I've been sick for months (technically years) and now I'm back to having no treatment after MONTHS of horrible testing.

As I stated in my previous post, you need biopsies, which are taken during a colonoscopy. This will definitely confirm a Crohn's diagnosis.

As the previous poster stated, i would be seeking another opinion at this point.

Yeah I need to talk to my doctor again on Monday. They have gone back and forth every day since Wednesday. Literally calling me saying "it's crohns! It's not crohns. It's crohns! It's not crohns." They even had a prescription for lialda in on Wednesday. It's so strange. Unfortunately, this was my second opinion. I'm thinking I may have to search elsewhere.

There was no explanation for the fistula. I'm starting to realize I've had not-great docs my whole life. I really like my current GI doctor, but the way this is being handled is definitely raising red flags for me. It's so weird to give me a Crohns diagnosis, then take it back, then give me the diagnosis again with a prescription, and then say it's just IBS?! Totally crazy.

How frustrating - you poor girl! At this point, is there any reason NOT to start the Lialda and see if it helps? Every Crohn's case is different - just reading this forum you can see how varied the symptoms and treatments are. It always upsets me when someone spends years trying to get answers, and in the mean time, the condition worsens.

@oldcrohnie--I'd start the Lialda, but the form they gave me is $600 with insurance, so they were going to work with my pharmacy, and then the next day is when she changed her mind and decided I don't have Crohn's anymore.

@beave- so I had the same thought. They were saying there wasn't enough info to tell if it was crohns or UC, which is why they called it idiopathic IBD, but that made no sense to me because my ulcers are all in the small bowel and my colon is totally clear, so that rules out colitis? I hate that I'm questioning this doctor because until this week, she's been fabulous, but now I'm feeling like she is maybe in over her head. I can acknowledge that I may be a confusing diagnosis, but the way they've handled this is so strange.

Indeterminate colitis

Final word: ileitis, cause MAY be from crohns, or from ibuprofen (I still don't buy the ibuprofen cause...). Because Pentasa was $600, they're putting me on budesonide. Hopefully it'll help!