Are you ever sick one day and relatively fine the next?

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Regular Member

Date Joined Jan 2009
Total Posts : 26
   Posted 3/18/2009 4:07 PM (GMT -6)   
My dr still isn't sure if I have Crohn's or not.

I'm getting some parasite tests later this week or next week.

I've been having symptoms for 4 months now. I'll feel fine for a few days, have an appetite, eat whatever I want, have normal bowel movements, and then the pain will come back and I'll have diarrhea and no appetite and pain for a few days, and then I'll feel better, and it repeats (cyclical symptoms may indicate some sort of auto-infecting parasite like strongyloides?). When I say "pain," I'm referring to a pain that ranges between 2 and 5 on the 1-10 scale that appears either to the right of my navel, in my right kidney area, or right at the bottom of my groin right above my genitals on the right side. The pain is only ever in one of those locations and it's only in one of them at a time. On *rare* occasions the pain goes into my right upper thigh.

I'm trying to find out if my symptoms match those of Crohn's or not. I spoke with my dr. yesterday and he said maybe I have a really mild case. I told him I want to test for parasites next. I used to eat a lot of sushi, rare-ish beef, and I have a dog. After I told him this, I found out it's good to test for parasites since some parasites can grow out of control and become fatal if you're given corticosteroids, which are used in Crohn's sometimes.

Here's a list of tests I've had so far and their results:

CT = mild thickening in terminal illeum
Colonoscopy = nothing remarkable, a few biopsies had granulomas
Upper endoscopy = nothing remarkable
Small Bowel Follow Through = nothing remarkable
Prometheus Blood test = negative for Crohn's and UC (altho my dr said this test gives false negatives and false positives)
Numerous hernia and urine tests for kidney stones = all negative

I took Xifaxan for 20 days (200mg 3 times a day). Starting on day 4 I felt better through day 17 when the pain and diarrhea came back. I suspect this had nothing to do with the Xifaxan and would have come back anyway since my symptoms seem to be cyclical.

Dr said if parasite tests are negative then we're gonna do the camera pill (capsule endoscopy) test and if he sees ulcers or anything indicative of Crohn's then he wants to start me on some Crohn's medication.

I just want to make absolutely sure I don't have parasites first because I'd hate to die from the Crohn's meds that send parasites into overdrive.

The only other thing I can think of re: parasites is that a month before all this crap began I got this weird bump on the side of my abdomen (looked like a spider bite) that didn't go away for 4 weeks. That could have been some sort of entrance mark.

Alright sorry this post is so long. I just wanna know if being sick one day (or a couple days) and then better next (for a couple days) and then repeat again is typical of Crohn's.


Regular Member

Date Joined Jan 2009
Total Posts : 26
   Posted 3/18/2009 4:10 PM (GMT -6)   
also not to be gross, but does your anus ever itch with Crohn's? Mine does sometimes. I know that can be a symptom of parasite infection.

Regular Member

Date Joined Nov 2007
Total Posts : 147
   Posted 3/18/2009 10:22 PM (GMT -6)   
Hey there. I used to have a very zigzag pattern early on with some patches of sickness lasting a while. One day severe D then the next day kind of normal. I never knew how I would feel the next day. Turns out I had some IBS along with the disease. I cut out some IBS trigger foods (mine is caffeine). Now that I am being treated for the crohn's and addressing the IBS I find less zigzag issues. When i have issues they hang around for while b/c it is flare vs and IBS issue.

Regular Member

Date Joined Jul 2004
Total Posts : 422
   Posted 3/19/2009 6:14 AM (GMT -6)   
HECK YES! Which is why I've chosen NOT to talk about my Crohn's within my office building. If I take a sick day and was fine the day prior and fine the following day there are evil, cynical people around that'll just think I took the day off and I wasn't really sick. Sometimes I'll talk to someone at 7am feeling great and by 10am I have to go home because I'm so sick. That happened just this week.

Other than the symptoms of this disease itself, it's the ONE thing I hate the most...the UNCERTAINTY of when I'm going to feel good and when I'm not.

I have a moderate case of Crohn' used to be mild. My GI has told me I probably deal with a bit of IBS with my Crohn's...where I feel fine for a period then have several days where I'm not actually in a Crohn's Flare, but just having a bout with IBS (D, gas, pain, etc).
Diagnosed in October, 2004 at age 32.
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date

Veteran Member

Date Joined Dec 2005
Total Posts : 544
   Posted 3/19/2009 6:33 AM (GMT -6)   
in a word: OFTEN
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 3/19/2009 8:26 AM (GMT -6)   
yeah Yes, and virtually always related to trigger foods. (Some food I can always eat, some I can never, and some I can only eat for a little bit or things will flare up. Triggers will vary from several hours to several days or even weeks before causing problems.)
How it works with me is like this: in summer I am relatively healthy, once I have recovered from the winter. (I'm far North and have bad SAD, this doesn't help.) In winter my gut gets more grumbly, and stress or trigger foods will upset it more easily. Soemtimes, even in summer, I will get an enormous flare up just out of the blue - I am now inclined to think that is because I have fallen off the diet tightrope, and it takes a while to hit ground. I pretty much know what my week ahead is going to be like, simply by regulating my diet and physical exercise/stress levels.
I think of it as having a low-level infection all the time, but the sensitivity threshold at which I start showing symptoms varies. Sometime the bug gets really stroppy - for example after I have been eating chocolate or cheese, or had too much caffeine or sugar for a while, suddenly I get diarrhoea and bloody stool again, fevers etc. (Recently I was warned by a nutritional therapist that my salt intake has a big effect on my gut, and I should cut way back.) Accompanying this I have bouts of sudden acute fatigue to go with my usual chronic fatigue, and depression, problems with memory and concentration, and often skin and joint problems - more recently, also lower back pain.
One thing that I learned last week was that fatty or oily foods in the lower gut, if you are not producing enough digestive enzymes, will cause severe pain and repeated bouts of painful diarrhoea with fever and nausea until the colon is empty. Real "I wish I hadn't been born" territory. After that - and this "morning surprise" is something I've often had and never known why - I'm right as rain for the rest of the day,albeit feeling a bit less full of beans. But the more often I have that sort of episode, the more the episodes tend to creep closer together timewise, and the more fatigued and generally susceptible to displaying worse symptoms I am. (After a bad winter, I am only really back to "full" health in late summer.)
I see exactly where you are coming from, thinking of parasites. I too tend to have an eye open for spirochaetes and nasty little protozoans like Borrelia Burgdorferii in particular - you might want to check out the Lyme's Disease forum here on HW. I would be extremely cautious in accepting the current received wisdom about tests and diagnosis in mainstream medicine on this subject however - as you will see if you do any research, the diagnostic guidelines which are now set in stone were designed for epidemiological use which is another purpose entirely, and much data has been excluded from current models of the disease. (Never a sign of good science or medicine.) I don't know much about parasites in detail, but the cyclical nature of your problem certainly makes me think that you may be on the right track, if the timing is actually regular and not just on/off in frequent succession. The timing and duration is certainly key to that diagnosis. Crohn's certainly is notorious for its acute variability, but not for being regular. smilewinkgrin Sorry, unintended pun there (for once) !
eyes Itchy bum, yes, very common with CD. Skin lumps and bumps - again, quite common as an extraintestinal symptom. I have tiny yellowheads and thumbnail sized purple blotches that look like bruises but never entirely fade, they come and go according to how well I am. In an extended flare, my spots become swollen and red; sometimes other invisible sore spots appear under my skin but never make to the surface, merely causing pain and swelling. As you say, rather like an insect bite, but when I know I can't have been bitten.
It is worth noting that IBS/IBD in some medical circles is very much an umbrella term for "unexplained gut illness we can't identify" - but sometimes it is taken to specifically exclude CD, UC, etc. The distinctions are pretty blurred and tend only to become clearer over a period of years.
Advice ? Yes, think about parasites, but try some good high dose probiotics meantime - you can get a lot of info on brands by searching posts here - and if that works, you may have cut the Gordion knot.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/19/2009 8:32 AM (GMT -6)   
I am like Snohare, if I eat the wrong thing it will ruin the day(s) for me. I wonder if it might be a good idea for you to keep a food diary and keep track of foods that may be irritating you.

Good luck
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Miss J
Regular Member

Date Joined Mar 2009
Total Posts : 27
   Posted 3/19/2009 12:35 PM (GMT -6)   
I have the same problem. I'll be fine for a week or two, then suddenly have a few days of what I call a "mini flareup".

There are two things I've pinned down as being the catalyst for both mini and full-on flareups: food and hormones. I can't tolerate caffeine, alcohol, or spicy foods at all (which sucks because I'm a hardcore foodie!), and I've noticed I have a mini-flare, without fail, at the end of every menstrual cycle.

Like a previous poster suggested, definitely keep a diary to see if you can see a pattern in your symptoms- this can really help a doctor in the diagnosis/treatment process.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 3/19/2009 1:32 PM (GMT -6)   
Yep, every day is a surprise. Aint it a beach ??
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Regular Member

Date Joined Jan 2009
Total Posts : 80
   Posted 3/19/2009 6:59 PM (GMT -6)   
Yes!!!!!  I absolutely agree!!!!!!!!!!

age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 3/19/2009 9:16 PM (GMT -6)   
All the time...I mean it generally doesn't mean the D has disappeared but lessened enough to function relatively normally for a day. Interesting aspect of this disease I think, but it does make it difficult for people to understand what we mean when we say we're sick...apparently you can only take a sick day if you're sick for many days. Strange contradiction..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Regular Member

Date Joined Nov 2008
Total Posts : 192
   Posted 3/20/2009 11:20 AM (GMT -6)   
Definitely. Sometimes I know it's because of stress or food, but even on days when I am incredibly happy and eating carefully, it will still hit me from out of the blue. Every day is a new adventure.
Dx with Crohn's Colitis; Meds: Pred and Imuran; female in late 20s.

Regular Member

Date Joined Feb 2009
Total Posts : 62
   Posted 3/20/2009 5:29 PM (GMT -6)   
I have "health swings" all the time. They can hit me in a matter of hours.
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist

Regular Member

Date Joined Aug 2005
Total Posts : 128
   Posted 3/20/2009 6:03 PM (GMT -6)   
yep. fine for an hour, day, even week sometimes, then BAMMM I'm in a nice flare up for a week.

Veteran Member

Date Joined Jan 2003
Total Posts : 1928
   Posted 3/21/2009 6:59 AM (GMT -6)   
I typically have a bad day here or there, then have several good ones. Sometimes I can go a few weeks. Unfortunately that's not the case right now :) But I kind of brought that on myself.
"Only the meek get pinched...the bold survive."

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/21/2009 9:46 AM (GMT -6)   
Another thing to remember that not only eating the wrong thing can trigger problems, but many suffer with anxiety with this DD and don't even realize it. What if I don't get to the br on time, what if fill in the blank, and then the anxiety kicks in. When anxiety hits me I end up with alot of gastric problems, like D and nausea and vomiting. Just wanted to bring this up so others could keep an eye on the stress levels too. I take Xanax when needed for my anxiety and it helps alot. I only have to take it maybe 1-2 times a month, sometimes a little more. It has made a big difference.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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