I think I have Crohn's Disease...(Need Advice)

[be_kind_to_owls]

Hello All:

I have been on this forum a ton over the past month or so researching about Crohn's and reading all of your stories. I have been looking over all of the symptoms and I believe that I have this disease. I am currently undiagnosed (probably in part because the GI that I was referred to was not the best doctor ), but I am going to a new doctor on the 17th and I believe that he will help me figure out what is going on. Until then, I was hoping to share my story with all of you and maybe get some advice (on what tests I should ask for, if this really sounds like Crohn's, etc.)

I always had a wonky stomach for as long as I remember. Growing up I would have the occasional bouts of diarrhea/constipation, but nothing too serious. I chalked my symptoms up to IBS and went on with my life. In college, things began to become a little more serious. My freshman year of college I would have bouts of diarrhea that would leave me crying in the bathroom because the pain was so severe. I figured that it was due to stress since I was in a new environment and that the symptoms would go away eventually on its own. Boy, was I wrong about that. By my sophomore year, the diarrhea attacks happened much more frequently. The pain was so severe the one day that I feared that my appendix burst and was rushed to the hospital. Since I wasn't having diarrhea on that day (for once), all they did was run an ultrasound to see how my internal organs looked. They said everything looked fine, gave me a prescription for Bentyl, and sent me on my way. I still felt awful and the medicine did nothing for me, but I figured that doctor knows best. I felt awful about the medical bills that I racked up by rushing to ER, and I told myself that since they found nothing wrong with me that I will never go to the hospital or see a doctor about my stomach ever again.

For about a year after the hospital stay, I felt pretty good. Sure I was still having bouts of diarrhea, but the pain was a lot more manageable and I was able to go about my daily life pretty normally. Then in April 2011 I had an attack that really scared me (since it was the first time that I bled out of my anus). Unfortunately it began at my sorority formal, so that was even more humiliating. I was in the bathroom for hours on end getting incredibly sick to my stomach. During a 48 hour period, I probably went to the bathroom about 40 times. At one point I stopped having diarrhea and was just pushing out straight blood (it looked like intestinal tissue). I was going to go to the hospital, but after the experience that I had the last time I just sucked it up and waited for the flare up to pass. By Monday my stomach was still all torn up, but I was able to make it to class. I just made sure not to eat that much food and I was able to get though the day with not that many attacks.

After that attack I didn't have anything happen that was too serious, and for a while my symptoms completely vanished and I felt really good. But then starting in July 2013, everything came back with a vengeance. I had chronic diarrhea since then, with serious attacks (bleeding, vomiting due to the pain, fever/chills, waking up and having diarrhea at night, diarrhea upwards of 6-10 times a day during attacks, the feeling that someone was ripping out my intestines). These attacks are happening about once a week at this point (I'll be constipated for a week, then have a diarrhea attack, then go back to being constipated). My symptoms were so severe that it was interfering with my daily life. I finally went to my regular doctor and he referred me to a GI in my area. I went to his office twice and told him about my symptoms and got a CT scan with contrasting dye and some blood work done to see if they can find the problem. The GI said that the CT scan looked normal (never actually looked at the scan himself, just went by the write up by the person that developed the pictures) and he said that my blood work looked normal (again, never told me if he tested for Celiac Disease, what my CRP level was, nothing). He basically told me that he thought I had an ovarian cyst (?!!?!?) and walked out of the room while I was still talking. I told him that I never had an issue with my reproductive tract but he wasn't having it. He told me that my symptoms were so unspecific that it would be incredibly difficult for him to diagnose me and scheduled me for a colonoscopy.

Well, after that exchange, I really don't trust that doctor sticking anything up my butt. I did some research on my own and found another GI doctor that seemed really promising and had really high reviews from his patients. I called the office and they were able to get me an appointment with him . As I said before, my appointment is on October 17 and I have a feeling that the new doctor will schedule me for a colonoscopy soon. I'm nervous about the procedure, but at this point I will undergo any testing to find the root of my problem and fix it.

I'm sorry if I just rambled on forever or if my story is too long. I just need some support right now. This whole thing is really having a huge impact on my life. I don't wish for Crohn's Disease, but I would definitely be relieved to have a diagnosis so I can start getting better. Sometimes I feel like everyone thinks that this whole thing is in my head. Does this sound like Crohn's Disease or something else? I would love any advice on the matter

 

[jessie45]

It does sound like it could possibly be Crohn's, especially with the bleeding. Good luck with your new doctor and I hope you get some answers soon

 

[Cat-a-Tonic]

Hi Owls, welcome to the forum. I'm glad you found us. No worries about writing a lot, I often ramble on and on myself. What you described certainly could be something like IBD (Crohn's/colitis), it's definitely not IBS with the bleeding and chills like you've described. Can you describe the bleeding - is it bright red or darker/black/tarry? Is it pretty constant or is it off and on?

You should be able to get your medical records from your old doc, which would show what tests they've done and what the specific results were. I believe by law they're required to provide hard copies of your medical records if you request it (my GI provides most test results electronically to me for free, I was told if I want paper copies I need to pay something like 10 cents per page, although I think if I balk at the cost they'd legally have to provide that for free too). So try to track those down, it could give you a good baseline of information as to what they've already done and where to go from here.

A colonoscopy is a good start - if it doesn't find anything, don't give up! Some doctors will say that a clean colonoscopy means no Crohn's, but that's just not true - Crohn's can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, and it often hides out in the small intestine where it's difficult to find (the colonoscopy only sees the very end of the small intestine, and the upper endoscopy only sees the very beginning of it, so there's a whole lot of small intestine that doesn't get visualized nor biopsied on scope). Make sure they take a lot of biopsies during the colonoscopy - some things, such as microscopic colitis, can only be found on biopsy.

Good luck with the new GI and the colonoscopy. Feel free to ask us any questions about the colonoscopy - most of us on here have had at least one (I've had 2 myself). There's a good thread here with a lot of helpful colonoscopy prep tips. Keep us posted on how everything goes!

 

[natmarie89]

YIKES!! You poor thing! I'm kind of the opposite - My GI issues were caught completely by accident on a scan and now the doctors are telling me I have Crohn's and I'm trying to convince them I don't. I find out for sure (I think) on the 21st. Good Luck and please update after your appointment!

 

[be_kind_to_owls]

Hi everyone!

I appreciate all of the advice thus far . Cat-a-Tonic: the bleeding usually only occurs after a bad flare up. The bleeding is usually a light red and comes when the diarrhea dies down. I will still have urgency and rush to the bathroom, but the only thing that will come out is this tissue-like substance that is a light red. Sometimes when I have regular bowel movements and I wipe, there will be light streaks of blood on the toilet paper (but nothing alarming). Sometimes my diarrhea is dark and tarry, but it doesn't happen very often. Lately, I've been severely constipated, so when I pass anything the stool is mostly covered in mucus. I think it's because of the barium sulfate that I had to ingest for my CT scan. I got it done about two weeks ago and all I've been able to pass is two tiny pebbles of poop. I've also been taking stool softeners to help get me going, but they haven't been working. Is this a cause of alarm that I should talk to a doctor about or should I maybe try a strong laxative to get things going?

I'm the type not to go to the doctor at all. For so long I just figured that I have IBS and kept it at that. But along with the symptoms that I mentioned before, I have noticed a few other "red flag" symptoms as of late. I'm lost about 11 lbs. in a month (due to no appetite/not feeling well enough to eat) and I've noticed that I've been getting more mouth ulcers than usual. These symptoms are also accompanied with lower back pain (which is something I don't usually deal with). I've also been extremely tired since I haven't been eating enough. I tried to explain all of this to the first GI doctor that I went to but he said that these symptoms are all unrelated to one another and stated that A. there might be fluid leaking from my appendix that is causing the pain B. that it is an issue with my reproductive tract (like an ovarian cyst) and C. it's just plain IBS (even though I have bleeding and vomiting and am being woken up in the middle of the night by having diarrhea). He did not listen to me or my opinion at all, and I was really offended that we would write it off as "a lady issue" when I have zero symptoms that would lead to that conclusion. I have a pretty high pain threshold, so for me to be in enough pain to seek medical assistance is a big deal.

Another thing that is steering me towards thinking I have an IBD is the fact that stomach issues run in my immediate family. My paternal grandfather had stomach issues all his life (though we all chalked it up to his love of alcohol), and my dad had really bad stomach issues in his late 20s/early 30s. He had to get scoped twice due to heavy rectal bleeding and had to get a few hemorrhoids rubber banned. He never talks about it since I think he is embarrassed by it, but I made my mom try to solicit information from him. She said that my dad said something about some of his intestinal tissue being dead and that he had to take medicine for a while to help it. I don't know what disease could cause that, but his symptoms sound a lot like UC. My dad never confirmed or denied this diagnosis, but my dad would be one to forgo medical treatment (he didn't even want to go to the hospital when he accidentally cut off part of his thumb and the bone was showing). I just wish my dad would tell me more information so it can help point me in the right direction of getting a proper diagnosis.

When I got the CT scan and the blood work done I didn't feel like I was flaring much (if I was in a bad flare I wouldn't be able to make it to the doctor's). Would that contribute to everything looking okay? I've spoken to the nurses that worked in the first GI's office and they said that IBD inflammation sometimes doesn't show up on a CT scan. I just want to know what could be causing all this . I was in so much pain last Saturday (severe nausea and labor-like contractions; such a fun night for a 23 year old lol) that my mom wanted to rush me to ER, but I managed to not get sick so I told her to hold off on admitting me. I think the next time I have a flare though I might just go to the hospital and see if they can rush all the tests so I can finally get a diagnosis.

You guys all rock! :emot-dance: I will definitely keep everyone posted on how my tests/doctor's appointments go.

 

[Cat-a-Tonic]

The red streaks of blood on the TP are likely from either fissures or hemmies. Probably nothing too major there, although of course best to get it checked out especially if it worsens or changes or anything like that. The dark/tarry stuff is more worrying - darker blood in the stool indicates it's coming from higher up in the digestive tract (so, not from a hemmie nor a fissure). I presume your new GI knows about this? If not, let him know.

As for the constipation, it would be quite worrisome if you get new symptoms, worsening pain, if you start having projectile vomiting, etc. Things like that could be indicative of an obstruction, so just keep an eye on how you're feeling. Two weeks is a long time, so if it doesn't improve shortly, then I would say yes, call your doc. They may be able to prescribe something like laxatives or enemas.

Wow, I'm sorry your dad's so stubborn and won't give you details about his illness/symptoms! I hope you can somehow get through to him that your health is more important than his embarassment. Maybe you could try writing him a letter, explaining all of this? Maybe share with him this statistic - I've read that if one parent has IBD (any type of IBD), then their child has about a 9% chance of developing IBD. If your dad indeed has UC, that makes you more likely to have IBD too - maybe he knows this and is feeling guilty, so let him know that you're not mad about things and just want information.

As for the CT being "normal", my GI explained to me that CTs get a good "overall" picture and tend to see hard tissue like bones better - an MRI gets better detail pictures of specific things like a particular organ, and sees soft tissue better. So that makes me think, a CT likely doesn't see the guts particularly well and an MRI might be the way to go. That's just my understanding of it - but if the colonoscopy doesn't find anything, you may want to consider asking for an MRE (MR-enterography, or specifically an MRI of the intestines, with contrast).

 

[be_kind_to_owls]

Cat-a-Tonic: From researching on my own, I figured that the bleeding stemmed from fissures. I've never had symptoms of hemorrhoids and I wouldn't be surprised if something ripped during some of the more "forceful" attacks. Once the diarrhea attacks happen again, I'll keep an eye out for anything that looks black and tarry. Sometimes I really have no desire to look at what just came out of me because I have a squeamish stomach and I am afraid of what I'd find :eek2: Slowly but surely I am getting over that fear lol.

Hopefully my dad will eventually confide to me what is wrong with him. I certainly wouldn't blame him if I do have an IBD, and my dad is being very supportive during my testing. I just thinks it's weird how he keeps "hinting" that he thinks I have something like UC and that I should tell the doctor that I think I have it. Due to not bleeding excessively, I figured that my symptoms fit under Crohn's Disease more so than UC, but most of my pain comes from around my belly button and the upper left quadrant, so maybe it is UC.

From talking to my first GI, he stated that he wanted to do the CT scan to mainly check my organs (especially my appendix). He stated that all my organs looked great so at least I can rule that out for the cause of all of this. I think that an MRI would be a great option if the colonoscopy is inconclusive.

Cat-a-Tonic: thank you so much for all of your advice. I really appreciate you and everyone else that posted on my thread in order to help me out

 

[Cat-a-Tonic]

No problem! I'm undiagnosed myself (they think it's IBD, as my symptoms "fit" and I respond well to IBD meds, but it stubbornly hasn't shown itself on any test result) so I know how frustrating and exhausting it can be to go through the process of trying to get diagnosed, and I'm glad if I'm able to help others on their diagnostic journeys.

If your dad has UC, that makes you more likely to have ANY type of IBD, not necessarily just UC. You could just as likely have Crohn's, microscopic colitis, etc - the genetics of IBD are funny that way. And I think you are correct about the bleeding and UC - my GI told me that I do not have UC because I'm only a sporadic bleeder, and he said with UC you pretty much bleed all the time (when in a flare anyway). If your bleeding seems to primarily come from fissures, then I would also wager it's not UC.

And with pain in the upper-left like you've described, it's possible that's coming from your small intestine. In which case, it's most likely Crohn's, as UC and MC only affect the colon and do not affect the small intestine. The downside of potentially having illness in the small intestine is, it's harder to get to - the MRE or a pill cam (AKA capsule endoscopy - where you basically swallow a tiny camera and it takes pictures throughout the small intestine) might be your best bet then if the colonoscopy doesn't find anything.

 

[be_kind_to_owls]

Cat-a-Tonic: I'm so sorry that the doctors weren't able to properly diagnose you yet I can just imagine how much it stinks to have those types of symptoms and no official diagnosis. From researching, I've read that Crohn's can be very hard to diagnose. I'm just hoping that if I do have Crohn's they can find it relatively quickly (though I know that this process can take a long time). What kind of testing have you undergone?

I also had a bit of a eureka moment yesterday that might point me in the right direction of getting all of this figured out. In March 2012 I had to get some blood work done due to something completely unrelated to my stomach issues (had a bit of a health scare but everything ended up being okay ). My GP wanted to give me an extensive blood test to cover all bases, and I have a copy of the results at home and looked them over again last night to see if anything jumped out at me. Everything looked really good and was within its normal range (or if it was slightly elevated it was super close to being in the normal range). But the only thing that was incredibly elevated was my hs-CRP. According to the test results, anything above 3.0 mg/L is high. Mine was 37.5 mg/L. According to an excerpt from the Cleveland Clinic website "Readings of 50 and above are possible, but we generally attribute a level higher than 10 to inflammation due to other conditions, such as an infection, illness, or a serious flare-up of arthritis, can raise CRP levels." Could Crohn's Disease be a factor in this reading? I'm not sure if the first GI tested my hs-CRP.

 

[Cat-a-Tonic]

Yes, it could be Crohn's or any number of things causing inflammation - CRP is considered a general measurement of inflammation in the body, so it sounds like you have a lot of inflammation based on that result - but the test cannot pinpoint any details such as where it is, what's causing it, etc. Most people with Crohn's will have a raised CRP and also ESR (another inflammatory marker in the blood) during flare-ups. About 10% of IBD'ers will not have a raised CRP nor ESR even in an awful flare, and I seem to fall in that 10% myself. (I do have some form of mild arthritis, and my CRP does seem to rise slightly when my arthritis is active, but not when my presumed IBD is acting up.) Other illnesses such as Lupus can make CRP rise as well, so it's not necessarily IBD, but something has to be causing the inflammation - so at least you can reasonably presume that you do have an inflammatory condition.

Yes, IBD can sometimes be difficult to diagnose due to a variety of factors. Both Crohn's and microscopic colitis have "skip patterns," meaning the inflammation is patchy rather than uniform. Since microscopic colitis can't be seen visually on scope, doctors basically have to luck into biopsying the right areas in order to find and diagnose it! And Crohn's can hide out anywhere in the digestive tract and can sometimes be difficult to visualize on scope when it's not flaring up, too. In the 4 years I've been ill, I've had 2 colonoscopies, 2 upper endoscopies, a pill cam, a CT scan, a variety of bloodwork and stool tests plus other tests I'm probably forgetting, and still no diagnosis for me. They've tested me for other things that can cause inflammation and/or produce IBD-like symptoms, such as Lupus and Addison's as well - no dice there either. So since we've ruled most everything else out, and since I respond well to IBD medications (I basically had to demand a trial run of medications), my doctors are comfortable with treating me as though I have IBD. But it would still be good to know for sure what type I have, what area of my digestive tract is affected, etc!

Good luck with your GI appt next week - I hope you can get the colonoscopy scheduled quickly and that it's worthwhile and gives you some answers so that you can move forward with treatment and get some good, lasting relief.