Questioning my Diagnosis

[bkpop]

Hi Everyone,

I am hoping for some advice/help in trying to figure out if I really have Crohn's, and if so, how to deal with it. Here's the long version of my story:

• Just over a year ago I had a severe case of constipation. I think it was due to major dehydration, as I've never been good at drinking water regularly.
• After that I would occasionally pass black/tarry stool. I know this is an indication that blood was entering my GI tract somewhere "early" in my system. This stopped on its own each time.
• Sometime around March 2014, I had a 2 day bout of bloody diarrhea that stopped on it's own. Throughout these months, I wasn't really worried/didn't go to the Dr. (I rarely go to the Dr./take medication for anything.)
• Late May 2014 the bloody diarrhea was back. I thought it would go away again on its own, so I took no action. About a week later I was traveling in the UK, so I did nothing. I got back home a few weeks later and was overly busy at work, did nothing.
• After I wised up and acknowledged this had been going on for a month, I went to urgent care. Tests ruled out infection, giardia, E. coli, parasites. It then took a few weeks to get into a primary care Dr., and then it took an additional month to get to a GE. After listening to my symptoms and pushing on my stomach, the GE preliminarily diagnosed me with Crohn's and scheduled a colonoscopy to "confirm." GE also ruled out C. diff.
• Colonoscopy apparently found full inflammation on the lower half of my colon, spotty inflammation in my upper colon as well as in the part of the small intestine he could see. After the procedure the Dr. reiterates Crohn's (and says he wants another test to look at my small intestine after I'm done with my meds). Days later I get an e-mail that says: "Your biopsy results were consistent with Crohns disease as were the stool samples."
• I am going to a Naturopath on Friday and go back for my GE follow up visit in a week.

So here's my problem: my story just doesn't sound like others I'm reading about. The only symptoms I am currently having are the inflammation and daily bloody diarrhea (usually right when I wake up and when I go to bed, but it can be periodic throughout the day). I also had 1 mouth sore (after I ate some salt/vinegar potato chips), and it did hurt a bit when the doc pushed on my stomach. That's "it" - no fever, no abdominal pain, no cramps, no weight loss, no loss of appetite. Before I had the colonoscopy I was eating as if nothing was happening with my gut - large meals, lots of fibrous foods, raw veggies, spicy foods, junk food, healthy food... nothing I eat causes me discomfort/pain. Outside of the bathroom I feel 100% fine.
I have not had a chance to talk to the GE about anything yet, so I thought this forum would be a good place to start.

Has anyone else had just these symptoms? Does this sound like Crohn's, or might it be something else?

Is there anything else they could/should be testing for (diseases or nutritional deficiencies)? I'm going to ask about Celiacs but have never noticed problems with gluten.


[Sorry for the long post!]

-----
Diagnosed w/ Crohn's: July 23, 2014
Colonoscopy: July 29, 2014
Meds:

• Prednisone: 60 mg/day, stepping down by 10 mg/week until off
• Delzicol: 2,400 mg/day

Currently eating a no-sugar, no-gluten diet (so far no change in symptoms)

 

[InkyStinky]

Hi there! Sorry I only have a minute right now. Crohn's can present in so many different ways - like you I don't have marked food intolerances I hear about in other folks - and my GIs have always treated my colonoscopy biopsies as the confirmation of my Crohn's dx.

(By GE do you mean "gastroenterologist"? I usually see that abbrv. "GI")

Have you seen the forum wiki? Here's a great overview to start with: http://www.crohnsforum.com/wiki/Crohns-Disease

Getting inflammation under control is very important, even if you aren't having "severely noticable" symptoms: http://www.crohnsforum.com/wiki/Inflammation

Are you familiar with CCFA? They have an archive of really informative webinars here: http://www.ccfa.org/resources/webcasts.html

Anyway, welcome to the forum! Glad you're researching your dx and have the small bowel studies planned to evaluate the extent of your inflammation.

 

[Clash]

My son has severe CD but is asymptomatic. His only outward symptoms is being a bit underweight. There are no hard and fast rules for CD symptoms. Many on here experience C instead of D, don't have mouth ulcers or fevers that accompany their flares.

Biopsies are usually the gold standard for dx. If you have any concerns about this discuss them with your GI. Honestly, the symptoms that members here vary just as much as their locale, location of disease and age of dx. This disease is very individual. One commonality in CD is that if left untreated or under controlled serious damage can be done.

 

[Danico85]

Hello

Your symptoms sound similar to what mine were like when i was first diagnosed. I was fine until i was in the toilet. I didnt have any pain, discomfort or loss of appetite, But i had bloody stools and constipation a couple of times a day.

I have Ulcerative Colitis. But have been told ive got Crohns aswell.

So basically i dont know what i have. All i know is that its IBD

I know this probably hasnt helped you at all but it was just to make you aware there are others like you who know they have inflammation of the colon but are not 100% sure which disease it is.

Nicky

 

[bkpop]

Thanks for replying everyone.

I've been reading since my diagnosis, so I know Crohn's is a very individualized and mysterious disease (frustrating!). Don't get me wrong, I am extremely grateful that I have limited symptoms, but so far my medication and better diet have changed absolutely nothing (too early? - I have no idea b/c my Doctors haven't been any help in guiding me through what is happening to me). In a fairytale world someone would say "I was in your same situation and my Dr. misdiagnosed me and here's how I fixed my non-chronic condition" (if only!).

Being new to all of this I am wondering about everything:
(I know I need to get the inflammation under control, but) are the medications hurting me more in comparison to helping?
Are the foods I'm eating helping or hurting?
Am I going to be one of the lucky people who will have few/no flares ever again after I get this one under control?
Will I be an unlucky one who ends up in the hospital in agonizing pain with my next flare or need surgery that is just a bandaid non-fix?

I'm not exactly stressed about all of this (at least not right now), but damn I would like some concrete answers!

 

[InkyStinky]

Did your GI discuss with you why he put you on Delzicol, as opposed to say, an immunomodulator (6MP, etc) or biologic (Humira, etc)? (Here's the subform on the 5-ASA drugs: http://www.crohnsforum.com/forumdisplay.php?f=125 )

Is your Delzicol split up over the course of the day (2x/day? 3x/day?)?

(I know very little about 5-ASA drugs - had a rare allergic reaction to them as a child, so they're no longer a treatment option for me).

Diet - have you checked out the diet subforum? http://www.crohnsforum.com/forumdisplay.php?f=17 Just like everything else with IBD, diet is so individualized... sorry for the non-concreteness! :lol:

 

[jeffg51]

Bkpop

Story sounds like mine. Same symptoms I had. They put me on 60mg of prednisone and lialda at first to try and decrease the inflammation and blood loss. A couple of weeks into that treatment it was not getting any better as I became severely anemic.

I ended up in the hospital for 3 weeks with a severe case of UC/Crohns colitis (they still don't know which) They wanted to take my colon out but I refused. Point is listen to your body and how you feel and get to a Dr if you start running fevers, get really fatigued, or notice pale hands, feet and gums. Your symptoms should start to decrease quickly being on that high of a dose of prednisone. Your disease maybe to far along if not. I needed IV steroids in the hospital and they still didn't help. It took a remicade infusion while in the hospital to see my symptoms start to subside. That was a month and a half ago with another infusion since and I still am not symptom free (although I am a lot better). I have my third loading dose of remicade next week. I am off the prednisone next week as well.

Still have a little faint blood in the morning BM but compared to what was coming out of me a little over a month ago it is a drastic improvement. I only go 2x a day now with really no diarrhea. I am staying away from fiber and red meat. Also no alcohol (I miss my beer). I am drinking protein shakes and taking probiotics and vitamins. Not trying to scare you with all this. Just be aware. Take care.

 

[bkpop]

InkyStinky:

Did your GI discuss with you why he put you on Delzicol, as opposed to say, an immunomodulator (6MP, etc) or biologic (Humira, etc)?

Nope - I go back for my colonoscopy follow-up visit next week - thus far my GI has discussed absolutely nothing with me. And that's been one of the harder parts of this whole thing so far. I know I need to get a new GI b/c this is going to be a partnership for the rest of my life. But that also feels like just 1 more thing I don't want to research/make a decision about right now (researching/figuring out food feels more important at this time). My friend suggested I try interviewing GI's the way you're allowed to meet OBGYN's b/f you commit to one. Has anyone ever done that before?

I take the Delzicol 3 x day. I can only assume he put me on the strong meds (I'm guessing these are the strong meds?) b/c my calprotectin test was over 2,000. (ha - and he'll probably just be annoyed w/ me when I ask... a la "b/c I'm the Dr. and I say so" attitude!)

Right now I'm eating mostly anti-inflam "medical food," green juice, and crock-pot veggies/rice.

 

[bkpop]

jeffg51 - wow, sorry to hear that has been your experience so far!
Not going to lie, your story does freak me out a bit. I've been on the meds for 9 days and I feel like I am seeing some changes, but it is possible that I am just being overly optimistic.

 

[maile]

I would be curious to know if your gastroenterologist found any granulomas when he performed your colonoscopy.

 

[Clash]

Delzicol is by no means a strong med. It would be one of the mildest. If the level of meds were put in a pyramid then it would be at the bottom among 5ASAs. They work really well for UC bit not as well for CD. The next step in the pyramid would be immunosuppressants such as 6MP, Imuran and MTX, the top of the pyramid are biologics such as remicade and humira. Sometimes the disease responds to a combo of these meds from different levels.

 

[bkpop]

Delzicol is by no means a strong med. It would be one of the mildest. If the level of meds were put in a pyramid then it would be at the bottom among 5ASAs. They work really well for UC bit not as well for CD. The next step in the pyramid would be immunosuppressants such as 6MP, Imuran and MTX, the top of the pyramid are biologics such as remicade and humira. Sometimes the disease responds to a combo of these meds from different levels.

Good to know!
The Dr.'s office mailed me my chart thus far and it says something about "pan colitis ... supporting a diagnosis of crohn's."

Today is the first day I've seen some serious changes, so I'm VERY EXCITED about that!

 

[David]

Unfortunately, it does sound like Crohn's to me. That everything was confirmed by biopsy makes it even moreso. Once in awhile we'll have someone in with acute symptoms and their doctor does a CT scan, sees some inflammation, and calls it Crohn's. THOSE are the types of cases where I think second opinions are very warranted.

Could the pathologist have read the biopsies wrong? Yes. Is it likely? Not at all.

We're here for you.

 

[AndyDFW]

"Once in awhile we'll have someone in with acute symptoms and their doctor does a CT scan, sees some inflammation, and calls it Crohn's. THOSE are the types of cases where I think second opinions are very warranted."

This is where I am, except I had NO symptoms...No weight loss, no diarrhea, no nausea, no loss of appetite, etc.

Abdominal pain only started 8 days before going to the ER when my appendix blew. I thought I had food poisoning and toughed it out, but it never improved. The CT scan upon admission showed inflamed (thickened) bowels and now they're talking Crohns. I'm definitely seeking a second opinion once out of the hospital. Its actually quite infuriating that they'd throw around Crohns based on CT scan only, especially since I walked around for a week with a gut filled with infectious pus.

 

[bkpop]

Update

So it's been almost a year since all of this started for me, and basically NOTHING has changed - at least nothing important. Here are the highlights:

Did a barium test - they couldn't see anything. Swallowed a camera - Dr. said it showed ulcers in my small intestine ("unfortunately this is a worst-case scenario").

I am still on Delzicol, but I started Humira as well. This Thursday will be my 4th dose (week 6) and it hasn't noticeably changed anything so far. I will see my GI (side note: I still think it's stupid that the word gastroenterologist is not abbreviated GE - it's not GastroInterologist) but I digress - I see my GI this Thurs. as well - will discuss continuing symptoms and my very strong suspicion that I am steroid resistant. Am very nervous that he's going to say "lets just stay the course for awhile" (sorry, I don't believe things are going to magically kick in a year later) vs. ... I don't even know what.
[Stopped going to the Naturopath - the NP I chose mostly managed to stress me out.]

I was put back on 20mg of prednisone while I was waiting for the Humira to be approved. While I was on the steroids my bleeding went nutso. During this time also experienced the "I still need to go, but really don't" issue which did not help the bleeding problem. About 1-2 weeks after getting off the steroids - no more bleeding! Only had very minimal twinges of stomach pain while bleeding. None since.

Current (or should I say simply recurring) symptoms: mucus, small amounts of "diarrhea" with and without solids, small and/or skinny stool, stool sometimes passing "in a rush" with brief cramping, and that's it.

Have definitely digressed into terrible eating habits. I'm just so damn tired of constantly talking about/thinking about food.

 

[Mr chicken]

Humira can take 3-5 months to be fully effective
6 weeks is just not long enough for the meds to build up enough in your system
DS started humira in April 2013 switched dosages in July reached normal in oct
Still on humira now two years later so give it time

Other meds 6-mp take 3-6 months
Mtx takes 8 weeks minimum sometimes 12 weeks
Remicade 6-8 weeks

The gut is slow to heal and meds take time to build up

 

[bkpop]

Humira can take 3-5 months to be fully effective
6 weeks is just not long enough for the meds to build up enough in your system
DS started humira in April 2013 switched dosages in July reached normal in oct
Still on humira now two years later so give it time

Other meds 6-mp take 3-6 months
Mtx takes 8 weeks minimum sometimes 12 weeks
Remicade 6-8 weeks

The gut is slow to heal and meds take time to build up

Interesting because my home health aide (shot trainer), Dr., Dr.'s office all told me the Humira should be effective/I should know if it's working within 4-6 weeks.

 

[InstantCoffee]

The effectiveness of medications is not indicative of Crohn's but rather severity and responsiveness to the medications.

Remicade, Humira and Prednizone failed to produce noticeable improvement on my symptoms while dietary changes were life altering.

My diet however is EXTREMELY limited to a point most people wouldn't expect, I'm not saying this is the case with you but as long as there is any margin of error don't discount dietary changes - there is a massive plethora of sensitivities common to crohn's patients from grains to FODMAPS, amines, salicylates, fiber, fermented foods, etc. and I'd say it's a minority of patients that don't respond to some form of dietary alterations.

If you are having reactions to food, it may simply be too much for the medications alone to overcome which is why they usually are used together.

Also GE is gastroenterologist, hence the E not I.

 

[Clash]

I've always wondered about that but assumed when talking about going to see one's GI they fully mean GI doc which would be their gastrointestinal doc like if someone is going to see their heart doc or kidney doc so you are labeling the specialty to organ system as opposed to specialist like cardiologist or nephrologist.

 

[24601]

Since you need to give the Humira more time to get to therapeutic levels and pred doesn't seem to work for you, enteral nutrition might be a good bridge therapy for you and help you get into remission sooner.

Hope you start feeling better soon