10 years of intestinal insanity

[optimusmog]

Hi! I'm a 31 year old woman, I live in NYC, and I was diagnosed with Crohn's about 10 years ago - the day I graduated from college, actually! Here I am, having just gotten a graduate degree, but with slightly less ravaged intestines at the moment!

My story is like a lot of what I have read in the few hours I've spent reading the boards here. I got really sick my last semester of undergrad and no one knew what was wrong with me. I lost 40 pounds in 2 months (and I was already a skinny vegan), had nonstop diarrhea, and spent most of my time barely able to walk. I collapsed right after I got my diploma (woohoo!) and was admitted to the hospital in Chicago, Illinois, with a fever of 104 - which I didn't even know was possible! Wow! They did all sorts of fun stuff - a flexible sigmoidoscopy, a capsule endoscopy, cat scans, MRIs, blood tests - and 10 days later I hobbled out with a diagnosis of Crohn's, a very sad terminal ileum and colon, and a whole lot of prednisone.

I moved to New York in early 2003, immediately got very, very, sick, and went to a very fancy GI on the insistence of my (very worried) mom. I've had uveitis about twice a year since 2004 - that's been a real trip. We hit the Mayo Clinic on a mission to solve this once and for all in 2006 and they were kind of... not sure what to do with me. But, very lovely people who wanted me to keep on doing the Humira that I sort of barely tolerated. Anyway, 9 years after hitting the Big Apple, and a bunch of visits to a hospital I like to call Mount Cyanide later, I've been on: Prednisone, Rowasa, 6-MP, Asacol, Lialda, Remicade, Humira, and finally LDN. That's just for the Crohn's, mind you, never mind all the weird eye things and joint things. When I noticed I wasn't feeling any better at ALL after a year of pinning all my hopes on LDN, I decided to move on to a doctor with fresh eyes who might be more inclined to play detective as to why nothing has made a true dent in my symptoms, and I feel that I'm finally getting good care from someone who is extremely thorough and compassionate.

I found out last week (AFTER TEN YEARS!) I have some IBS overlapping with my Crohn's, which is probably why I have felt like utter crap even when my scopes show that I only have "a few active ulcers" in my colon. I've resisted joining forums like this because I have spent several years being told by my GI that I'm "not really that sick" in spite of feeling like a pile of puke - so I felt like I'd be intruding on people who were real Crohn's disease patients. You know, unlike me, who has been faking it (?!?!) - yes, I know that was bonkers.

Well, I'm here now and I'm excited to meet you all.

 

[maria]

I Have the same exact problems!! Try To stay away from gluten!! Read up on it. God bless you.

 

[David]

Welcome to the forum, I'm really glad you joined

It sounds like you've had a pretty tough journey, I'm sorry to hear that

A few questions if you feel like sharing:

1. Who told you that you also have IBS and how did they determine that?

2. I noticed you said you're a vegan. When was the last time you had your vitamin B12 levels tested and what were they? Do you supplement B12?

3. What are your current symptoms?

4. Have you made any dietary changes?

Again, welcome!

 

[Angrybird]

Hello and welcome to the forum :bigwave: I am sorry to see you have had such a tough time of it I am also wondering about the IBS diagnosis.... Also what meds are you on currently? How are you feeling at the mo?

Really glad you have joined, there is a lot of helpful advice and support here.

AB
xx

 

[optimusmog]

First, I just want to thank you all for being so kind and making me feel welcome - I wish I'd found this place years ago!

David and Angrybird, to answer your question about the IBS, my new GI (I've been seeing her only about a month) came to the IBS diagnosis after looking at my 10 years of medical records and then scoping me. She noticed some gastritis and esophagitis that seemed to go along with what she called "systemic inflammation," beyond just the small ulcers that were in my colon.

So, after most recently being on Lialda and LDN with my last GI, this doctor has me on only Prevacid, which has helped with a familiar sensation I now realize was reflux, and Pentasa - I swear I was on this for a few months after a hospitalization maybe 6-7 years ago but I'm not sure why I got taken off of it. I feel like my last GI was really eager to try EVERYTHING in rapid succession and then, around 2008, after I'd been to the Mayo Clinic and the GI studies showed that Humira had basically put me in remission, I think my doctor got complacent, so even when I said that my quality of life was not where I was hoping it could be, he said I should just live with it and stick to 100mg of 6MP and Lialda, with the occasional course of Flagyl.

Right now I'm recovering from a flare, but I feel like I tolerate Pentasa WAAAAY better than Lialda!

And, David, to answer your questions, which I really appreciate because they helped me think through what's being going on with my diet:

2. I noticed you said you're a vegan. When was the last time you had your vitamin B12 levels tested and what were they? Do you supplement B12?
-I was a vegan, yep, and I soooo did not have it in me to keep up that level of dietary restriction after I got very ill. Since there was disease found in my terminal ileum, they looked at my B12 levels, and today I'm apparently NOT B12 deficient, though my levels are "low-normal." I'm so glad you asked though, it took me FOREVER to come to this because it explains the lethargy and a few of my other symptoms. I do take a sublingual B12 supplement.

3. What are your current symptoms?
-Right now I'm most bothered by abdominal distention and pain - it looks like I'm about 9 months pregnant! And of course the diarrhea. I would say I have around 6 bowel movements a day, and the great news is that I'm not seeing blood now. My weirdest current symptom is iritis in my left eye, which is on the mend thanks to prednisone eye drops. A weird symptom no one, including a cardiologist, has figured out is my heart rate being elevated. I try to keep active even when I'm feeling like crap. I jog and box 4-5 times a week no matter how I feel (which is not always smart), but when I try to exert myself aerobically, even when I climb the subway stairs, I get winded and my heart starts racing. I'm too fit to explain this and it started right when I got off 6MP and started LDN, and my pulmonologist says it's not a lung problem. I was afraid this could be the Lialda, the reflux getting worse, the LDN not working, something cardiovascular (had that ruled out with some tests), my migraine drugs (Topamax and Imitrex)... who knows.

4. Have you made any dietary changes?
-Yes! I now eat fish (since 2009) and dairy products (since about 2004)... except I don't think I can eat most dairy products. Like Maria suggested, I've been looking into gluten sensitivity. My GI tested me for celiac and I'm negative, but I'm curious if there can't be some correlation here. I've established I can't eat white potatoes and I'm pretty sure I can't do lactose. I was born with milk/soy intolerance but as I grew up I think it was assumed I grew out of it. I was looking through the message boards here and doing some research online, especially because so much of this dietary stuff seems to overlap with what might be causing the migraines I've had since I was 3!

Thanks to you all again for welcoming me!

 

[David]

Hi again optimus New stuff in regards to what you just said:

1. Western Medicine's "low normal" for vitamin B12 is inherently deficient and it REALLY needs to be raised. Do you know the exact level? If not, try to find out or at the very least, get tested again soon and get the exact number. People can be "low normal" with serum levels of 220, 230, 250, etc but still have elevated levels of methylmalonic acid and homocysteine which means they're deficient. And they of course have symptoms of deficiency but their doctors look at the "low normal" and think it's nothing. There is a very good chance that sublingual B12 is not sufficient to bring your levels up. I personally suggest getting your B12 to 500+! This is why it's important to get tested. If your levels are still low on the sublingual form then you'd potentially need injections.

2. One of the symptoms of vitamin B12 deficiency is...

*drumroll*

Rapid heard beat

3. How are your iron, RBC and hemoglobin levels? Have you had a CBC done lately? I assume the cardiologist would have checked that though.

4. I don't believe you have IBS. Now, I'm no doctor (that never shuts me up though ) but with IBS, the structure of the bowel and digestive system are not abnormal. It does not cause inflammation. You've got Crohn's Disease and maybe some other stuff going on, but not IBS. Ask your doctor to find a study or reputable website that says IBS causes "systemic inflammation" visible via scope and I'll be happy to eat crow. She may point to some "cutting edge research" that says in a certain small set of IBS patients have an increase in inflammatory cells in the ileum and large intestine, but this cannot be seen visually via scope. And as I always say, I think the vast majority of IBS is undiagnosed IBD so that this "cutting edge research" is finding inflammation that tells me that the Irritable is Inflammatory. You may want to discuss having her test your [wiki]fecal calprotectin[/wiki] to help distinguish what's going on. *gets off soapbox*

5. It's not always the lactose in milk that is the problem. Often it's casein as well. I personally think anyone with IBD should try a gluten free/dairy free diet to see if it helps as those are such common sensitivities. And yes, even if you test negative for celiac.

6. With that amount of bloating, if dietary changes don't help, you may want to discuss being tested for SIBO with your doctor. It's not uncommon in people with Crohn's Disease.

 

[optimusmog]

Wow, am I glad I'm here. I have a lot to talk to my doctor about! I sort of just want to print out your post and have her address each point to my satisfaction, haha!

Having just switched GIs I have a stack about as thick as a phone book of my records from that office - and sadly they only gave me 3 labs, which means I'm missing at least 15 or 16 reports, but I didn't leave on good terms so I'm not surprised I didn't get everything. Anyway, the last one says my B12 was around 250. When I was feeling much better in 2006 and I went for a second opinion at the Mayo Clinic (who are way better about sending you home with your lab results), my B12 was 560! My iron level has been on a roller coaster, which I had no idea about until I read my records, but as of last month it was good. My red blood cell count is another story - it's always, always low normal! 3.98 as of March 15 but 2 GIs now have said no big deal. My hemoglobin count can't make it out of 12.something - it's always 12.7 or 12.9. Just high enough to not be of concern to my doctors. I'm relieved you asked. Beginning to think I was crazy. And B12 deficiency causes high heart rate??!?! Hello! Ok. That sort of seals it for me.

I'm totally on board with exploring what the heck's wrong with me and I'm sure open to avoiding gluten and dairy - I'm tired of 10 years of "just live with it." I find it hard to believe that no one can figure this out - I've never even heard of SIBO! That seems so logical! I feel like my old GI just got sick of me saying, "But I think I should feel better than this."

Thank you so much for all your thoughts and advice, this is really helpful to me.

 

[David]

If your iron levels are fine then the lower RBC could be due to the vitamin B12 deficiency. It's involved in erythropoiesis (the making of red blood cells). Folate (vitamin B9) and iron also have crucial roles for that matter.