Tired of Bleeding!

[tinkgrrrbell]

So...two years ago I was having stomach pains on and off. I started taking tums and it seemed to help. Then one day out of the blue, I'm passing blood in my stool. Well...actually there was no stool, only lots and LOTS of dark blood. Needless to say, I passed out in the bathroom. When I came to, I had my little brother call my dad for help, and they rushed me to the emergency room. I was there for 3 days, and had to have blood transfusions. They performed a colonoscopy, but didn't find anything. The doctors there were awful, and didn't suggest any followups, didn't give me any information, and hardly talked to me, really. They were just like "Well, we don't know why you were bleeding. Goodbye and have a nice day!" I'd never been hospitalized before and really didn't know how to ask questions, what to ask, and who to ask. I assumed they were the professionals, and if there was anything they could tell me, they would.

My symptoms went away after I was out of the hospital, and I continued life as normal. It took me an entire year to pay off the medical bills, even with insurance. For two years after the incident, I was absolutely fine. Then, one day, it happened again. This time I wasn't as shocked by it, and didn't end up passing out. I did, however, make the mistake of trying to go through the "system" to avoid emergency room charges, and made an appointment with my PCP. She got me a next-day appointment with a specialist. He scheduled me a endoscopy for a couple days later. I didn't make it that far. I ended up bleeding out 3/4 of my blood supply over the span of those 3 days, and ended up in shock on the floor in my own vomit, shaking uncontrollably and unable to even life my head. My fiance called the ambulance, and once again I ended up in the emergency room. Thank God I had requested all the medical records from last time, and my fiance brought them to this new hospital so that they were aware of what had happened before. They performed an upper endoscopy, and found nothing. Once I was out of the hospital, they scheduled a pill endoscopy (you swallow a camera...it's pretty cool actually) and they found ulcers in the ileum. They performed another colonoscopy and took biopsies, and scheduled a follow up for 2 weeks later. My fiance and I kept asking my specialist (gastroenterologist) if there were any dietary changes I needed to make, including limiting alcohol, and he kept saying there was nothing I needed to change. He didn't even make suggestions. Which frustrated me, because the more I researched my symptoms, the more suggestions online I found for dietary changes, keeping a food journal, and limiting alcohol. Why isn't my specialist suggesting ANYTHING?

I didn't make it to the follow up. I had another huge bleeding episode (big surprise, since my specialist kept telling me I didn't need to eat any differently) and had to go back to the specialist a day early for an emergency appointment. He diagnosed me with Crohn's, once again gave me absolutely no suggestions or recommendations for diet changes, but agreed with me when I brought up the fact that online I read that a high-protein liquid diet helps during flares. Shouldn't HE be the one bringing that up??! My God, if I hadn't read it online, I'd still be eating and drinking as normal, and bleeding to death. He put me on an anti-inflammatory that costs a fortune, and basically gave me no other information about Crohn's. I am SO glad we have the internet in this day and age, because some doctors apparently don't feel it's their job to give you any advice for a chronic illness they diagnose you with.

I have another follow-up in a week, and have been giving my intestines a rest with a liquid diet, and taking my anti-inflammatory, as well as reading up on the different types of food to be careful of. I'm starting a food journal.

I did read online that Intestinal Endometriosis can mimic Crohn's Disease...I was married for 4 1/2 years and couldn't get pregnant (but he was able to get his second wife pregnant twice), and my aunts on my dad's side and my sister all have endometriosis. Big indications that it's highly likely I have it as well. So, on top of switching specialists for a second opinion, I will also be seeing my gynecologist and pressuring them to check for Endometriosis. I've tried to get them to do it MULTIPLE times in the past, but they kept saying if my period cramps weren't making me pass out from the pain, that I don't have endometriosis. Which is bull, because my sister didn't even know she had it. They found it while performing another surgery- she had absolutely no symptoms, and I've done enough research online to know that not everyone who has it has any symptoms.

At this point I am completely frustrated with our medical system, and the ridiculousness of having to research everything online to get more information that my "specialists" can give me, but still extremely grateful for what help I DO get from the medical system. It's better than nothing. Thank God for the internet, is all I can say!! Will keep you all posted on my journey, and hope to make friends and learn things that will help me heal.

 

[nativesith]

Doctors?! OMG. I feel similar. No doctor told me what to eat, or even mentioned a low residue diet. Revolving door and they push ya out at the end.
One must really educate and take care of one's self with this. I know that now.
Hugs and prayers.

 

[Tuff]

Hi Tinky,
I'm new here too, welcome to the club. My gastroenterologist is not good with giving me information as well. I think they forget that we don't know anything about what ails us. I have to keep asking him questions. Make a list of what you'd like to ask him on your next visit. If he's not forthcoming, find another doctor who is.

 

[SarahBear]

Welcome to the forum! I'm sorry you've had to go through all that! :hug:

What was the diagnosis of Crohn's based off of? If they took biopsies during a procedure and they came back positive for Crohn's, you definitely have Crohn's. If a Prometheus blood test was done and came back positive for Crohn's, you very likely have Crohn's. Biopsies are the key to diagnosing Crohn's - if they were not done, I would ask for the procedures to be done again and biopsies be taken.

Are these bleeding episodes during your period? If so, then I would definitely suspect it's being caused by endometriosis. Otherwise, it sounds more like Crohn's. But, you can absolutely have both - in fact, endometriosis is more common in women who do have Crohn's. Have you been on birth control and if so, did you notice a difference in symptoms during that time?

I suggest that you request a CT scan or MRI be done. These tests can sometimes show endometriosis if it's severe enough. Otherwise, you'll need to have surgery (most likely a simple laparoscopic procedure - nothing big) to be certain.

It also sounds as if your doctor isn't quite clicking with you. If at all possible, you might want to look for another. Some people have to go through several before they find one they really feel comfortable with, but doing so is worth the effort.

What anti-inflammatory are you taking? Is it Prednisone?

:hug: I hope things get better for you soon!

 

[tinkgrrrbell]

Hey! Thanks for the response

So that's the weird part....they DID take both a blood test AND biopsies during the colonoscopy, yet he still kept calling it a "differential diagnosis" and said it "was most likely Crohn's" due to ruling out other possibilities. I thought the same thing....if he did a biopsy and a blood test, shouldn't he know for sure whether or not I have it? He basically told us that there is no 100% certain way to diagnose Crohn's, especially when you only have ulcers and inflammation, but NOT fistulas or strictures. Is this not accurate? I'm so confused

I actually don't remember if the last bleeding episode was during my period, but this one seems to have occurred right when I was sure my period was about to start. I'll have to pay attention to that!

The anti-inflammatory I'm taking is budesonide. 3 pills per day. I just started it a few days ago, hoping it helps.

I already requested to change my primary care physician (should have checked out her Yelp reviews before I went with her!!) and will see a new specialist at that point. Should go into effect in 5 weeks, so hopefully I make it till then! I think it's always smart to get a second opinion, even when you like your doctor. I'll look into the CT or MRI thing. Thank you for the advice!!

 

[SarahBear]

He basically told us that there is no 100% certain way to diagnose Crohn's, especially when you only have ulcers and inflammation, but NOT fistulas or strictures. Is this not accurate? I'm so confused

It is not. Biopsies will give you a definite answer. The Prometheus blood test isn't extremely reliable, but I think it's more inclined to give false negatives than false positives (and it does not need a 100% positive result to be positive). It sounds like the doctor just has no idea what he's talking about. I'm glad you're looking for a new doctor. They might want to redo the tests done by the previous doctor - after reading your story it sounds to me like that would be a good idea.

Keep an eye on the times of the bleeding if you can. In fact, a journal documenting symptoms, eating habits, and your body's reactions to foods might really help you.

:hug: I really hope you get all this sorted out soon!