Mild Disease - Maybe getting worse

[Scipio]

Hello. I've read this forum occasionally for while and have finally decided to join. Since my disease is mild, in some ways I don't feel worthy after reading the many cases of people struggling with such severe disease. By comparison I have nothing to complain about.

My Basics
Middle-aged male. Biotech research scientist by trade (not a physician)
Diagnosed with Crohn's in 2012

Signs and Symptoms
No diarrhea. Occasional mild ileal pain of at least 20 years duration. Ruptured appendix w/appendectomy in 2011 - x-ray showed some thickening of the small bowel in the ileal region. One round of severe anemia in 2012 (that led to the diagnosis). Upper and lower GI endoscopy normal - no lesions or inflammation. A few small aphthous lesions seen in the small bowel by capsule endoscopy.

General Health
Hypertension controlled w/beta blocker. I generally feel pretty good. I would not consider myself to have an illness if I hadn't been formally diagnosed w/Crohn's.

IBD Medications
None. GI said my disease was so mild that therapy side effects would probably be worse than the disease.

Recent Developments
Fever of 3 days duration with worsening ileal pain - followed by a return to normal. MRE scheduled for next week. Doc thinks we may try Budesonide if the MRE findings warrant it.

So that's the summary. In future discussions I may be able to offer some scientific insights or explanations to some questions. My areas of expertise are primarily immunology, clinical trials, and lab tests. But people should be aware that I am a scientist and NOT a physician.

 

[araceli]

Welcome to the forum. Thanks for sharing your Story. Crohn's is different for everyone, some have all the terrible symptoms, others can be asymptomatic. Did you had a faecal calprotectin test and Sed rate? I hope it's not a flare and you continue feeling good. Good luck with MRE.

 

[birdonastick]

You reminded me of me, so I'll overshare in your thread a minute. Welcome!

DXD 2003 here, local ileocecal, initially mild, now moderate to severe plus extraintestinal goodies. Most days are good days courtesy of remicade and MTX ( and I was a very very reluctant customer for biologics, no regrets that I was slow to go on them, or that I did do so.)

Misery isn't the only metric. I'm lucky in that I don't have the stereotypical lifetime near a toilet D, but I have had some gnarly events, often because I don't have much warning, I don't have much pain, I have vague twinges that four hours later reveal themselves to be a hellish obstruction. My most dangerous probably CD related issue (DVT) gave me no symptoms at all and was found by chance while CT'ing my guts.

My GI is a fan of coming in aggressively with steroids and ramping down rather than having to ramp up only to have to ramp down again - your mileage may vary, but I'd want to hear the benefits/risks of both approaches in your situation. And I'm not one to take the pred lightly, some people suffer less on it and some more. I'm driven to the brink by it and my maternal grandmother with CD gets essentially zero side effects even from high doses.

I do recommend taking any fever symptoms very VERY very seriously, based on my own experience with them. I'm very stoic about certain kinds of pain and I've been re-trained out of that and had to learn to listen to some very light symptomatic hints that actually spell out big trouble.

Love or hate it, listen to your body closely.

God, that sounds like I'm trying to scare the pee out of you, I hope I haven't and I hope you don't take it as such! It's just helped me so much to recalibrate my relationship to "suck it up and don't complain" a lot and to recognize things that are not right even slightly.

 

[Scipio]

Thank you for your support. I have not had a sed rate or fecal calprotectin test. I have had a CRP test, which was well down in the normal range. Below 2.0 as I recall.

Even though I am on no IBD drugs, every time I have plugged my symptoms and test results into the various online disease activity scoring methods, CDAI for example, it always comes back that I have inactive disease or am in remission. This is good news but it leaves me (and the doc) wondering what therapy, if any, I should be taking.

Normally the goal is to first induce remission and then maintain it. But if I'm already in a long-standing remission, what's the approach for maintenance? Budesonide might be good for induction if needed but steroids should not be used for long term maintenance. Mesalamine doesn't work very well for Crohn's - no better than placebo in recent studies. Thiopurines and other immunosuppressants seem to be too harsh for mild disease, and biologics are beyond that.

So if anyone has any good insights on what to take to maintain remission in very mild Crohn's, that would be very helpful. Thanks.

 

[my little penguin]

Cdai really is only good in a research study not in clinical practice
If our Gi went by the pcdai Ds would be in big trouble .
Think of it this way would you live in a house with a fire smoldering in the poly urethane cushions . You know the fire is there . From the outside doesn't appear to do much damage since its smoldering .
CRP and sed rate can be very normal in folks who have active inflammation .
Some only have disease located in the small bowel which is very long .
The only way to see and monitor this disease is mre /pillcam and fecal caloprotectin.
Bloodwork should include standard markers every time
CRP sed rate sat/alt CBC and cmp at least .
Untreated crohns can go from mild to deadly quickly which is why it needs monitored and treated.
Old school of thought was clinical remission
Newer thoughts are for full mucosal healing.

Ds was dx at age 7 with "mild-moderate " crohns.
Mild since the inflammation was microscopic but moderate due to weight/growth failure etc...
At age 11 he has basically every EIM out there and is weekly humira plus mtx
Plus a restrictive diet ( mostly formula )
Ds has tried every class of drugs and most within the class but failed them.

Four years of reading research papers and studies
I would take biologics over immunosuppressants any day.
Classic immunosuppressants don't alter the disease course or reduce the likelihood of surgery which is 75% within 5 years of dx.

If my only choice of treatment was immunosuppressants- mtx has a better track record in terms of lower cancer rates than 6-mp/aza

Biologics have had next to no issues in 3 plus years
Including elementary school illnesses .he is my healthy one .

Read the parents research section
It's separated by meds etc.,,,

Other option instead of steroids
Is formula only no food for 6-8 weeks
As effective as steroids none of the side effects
First line of defense in Europe
Not the U.S.
Ds did it twice .

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=43002

Link to lots of research papers
Granted they are for kids but still apply

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=71686

Link to the diet ( formula based with limited whole foods as an adjunct therapy )

 

[birdonastick]

Cdai really is only good in a research study not in clinical practice
If our Gi went by the pcdai Ds would be in big trouble .
Think of it this way would you live in a house with a fire smoldering in the poly urethane cushions . You know the fire is there . From the outside doesn't appear to do much damage since its smoldering .
CRP and sed rate can be very normal in folks who have active inflammation .
Some only have disease located in the small bowel which is very long .
The only way to see and monitor this disease is mre /pillcam and fecal caloprotectin.
Bloodwork should include standard markers every time
CRP sed rate sat/alt CBC and cmp at least .
Untreated crohns can go from mild to deadly quickly which is why it needs monitored and treated.
Old school of thought was clinical remission
Newer thoughts are for full mucosal healing.

Ds was dx at age 7 with "mild-moderate " crohns.
Mild since the inflammation was microscopic but moderate due to weight/growth failure etc...
At age 11 he has basically every EIM out there and is weekly humira plus mtx
Plus a restrictive diet ( mostly formula )
Ds has tried every class of drugs and most within the class but failed them.

Four years of reading research papers and studies
I would take biologics over immunosuppressants any day.
Classic immunosuppressants don't alter the disease course or reduce the likelihood of surgery which is 75% within 5 years of dx.

If my only choice of treatment was immunosuppressants- mtx has a better track record in terms of lower cancer rates than 6-mp/aza

Biologics have had next to no issues in 3 plus years
Including elementary school illnesses .he is my healthy one .

Read the parents research section
It's separated by meds etc.,,,

Other option instead of steroids
Is formula only no food for 6-8 weeks
As effective as steroids none of the side effects
First line of defense in Europe
Not the U.S.
Ds did it twice .

Thanks for posting, this is some useful info for all and sundry!

 

[birdonastick]

Thank you for your support. I have not had a sed rate or fecal calprotectin test. I have had a CRP test, which was well down in the normal range. Below 2.0 as I recall.

Even though I am on no IBD drugs, every time I have plugged my symptoms and test results into the various online disease activity scoring methods, CDAI for example, it always comes back that I have inactive disease or am in remission. This is good news but it leaves me (and the doc) wondering what therapy, if any, I should be taking.

Normally the goal is to first induce remission and then maintain it. But if I'm already in a long-standing remission, what's the approach for maintenance? Budesonide might be good for induction if needed but steroids should not be used for long term maintenance. Mesalamine doesn't work very well for Crohn's - no better than placebo in recent studies. Thiopurines and other immunosuppressants seem to be too harsh for mild disease, and biologics are beyond that.

So if anyone has any good insights on what to take to maintain remission in very mild Crohn's, that would be very helpful. Thanks.

If I were lower on the cascade than 6mp and I wasn't in enough trouble to warrant a course of steroids and then off again to get me out of trouble, I would probably be looking at dietary and lifestyle controls. (Pentasa's worth a shot, I suppose, on the off chance you're one of the three people for whom it seems to work.)

Managing stress is the hardest medicine of all for me to comply with to this day.

MTX is not popular in the cascade, but it made as much difference for me as the day I started remicade, so that's a med I would not write off if you are ever acute enough to warrant considering it.

 

[JDTM]

Your story seems to resonate with mine. I'm also "mild," but when I was flaring, it certainly didn't feel mild! I was overweight to begin with, but I rapidly lost 50 pounds -- something was definitely wrong. My IBD is localized at the ileum for now, and I currently have things under control. My meds are in my signature -- I'm not sure if the Pentasa does much to really help me at this point, but if it ain't broke... don't fix it. My doctor was open-minded enough to let me try taking LDN, and that has been good for me thus far. If I had to guess, I would think the LDN is what is doing the bulk of the work to keep me in remission. I've also taken budesonide in the past to knock the inflammation down.

Everyone is different, so I'm not sure how much this will help, but keeping the inflammation down is the name of the game, as you want to prevent scarring and strictures. I hope that you are doing OK -- please keep us posted on your progress.

 

[birdonastick]

Oh, yeah, I completely forgot LDN. I failed it, but I'd definitely try it again, and I probably would have had better results earlier in my history.

 

[Scipio]

I had the MRE today. It seemed to go okay, although the barium solution was borderline nauseating to drink. No results yet of course.

Also, as part of my my work I attended the American College of Gastroenterology meeting in Honolulu earlier this week and attended a lot of IBD podium presentations and poster sessions. One interesting research report poster dealt with late onset (age >45 yrs) Crohn's versus earlier onset disease. In talking to the author (a research GI) he said it was fairly common for late onset mild Crohn's to stay mild for many years or decades and even to require no treatment at all. I fall into the category of late-onset mild Crohn's, so I'm really hoping that I turn out to be one of lucky ones whose disease doesn't really ever worsen.

 

[Dayblaze]

Hello Scipio,

Thanks for posting this. It made me have hope. I was just diagnosed at 44 this past August, and I only had a chronic stomach ache that would not go away for 4 months prior. No other symptoms, but a gallstone showed up on a sonogram done in my Dr. office, and my primary care physician was concerned about it.

So my primary care physician referred me to a GI specialist to see if I should have my gallbladder removed. I was lucky to be diagnosed so early with Crohn's because my GI is an older doctor who has "seen it all" and he didn't think that my stomach ache was something to be swept under the rug and all attributed to the gallstone. The pain I had wasn't typical of a gallstone, and he wanted to do an upper endoscopy to check for ulcers, and a lower colonoscopy because of a family history of polyps. He confirmed his suspicions with a CT enterogram, the last 13cm of my terminal ileum is affected.

Thank God he was experienced and wise because I could have had a different outcome and misdiagnosis if he fell for the low hanging fruit.
My GI said it was a mild case too, that since I had no symptoms he would start out small and put me on Pentasa.

My stomach ache went away, and other than swallowing 8 pills a day, I only have Crohn's because I was told I did. I would never known I was "sick" otherwise. I am using the SCD (Specific Carbohydrate Diet) for the last 2 months in order to reduce inflammation, as my CRP levels are elevated, but not too high. So I am doing Pentasa and diet together to see if I can reduce the internal inflammation.

Your post makes me feel better because I was worried that the least aggressive approach would bite me on the ass later in life, but you post gives me hope, makes me feel a bit better.

Also don't feel bad or unworthy about having a mild case, it just is the way it is and its mentally scary and tough at times. Like a ticking time bomb, when will it hit me like a ton of bricks? Perhaps soon, later, never??? It's a disease that can screw with your head if you let the worry overtake you. We all need support on our individual journey with this disease, in all our shapes and sizes, and with our disease progression / remission, mild or severe. So don't feel bad, you need support through this, and this forum is a place to sound off and get it.

I have something in common with you too, I am a Biologist, have been working "at the bench" as a research scientist in industry for 6 years now. Poster sessions at seminars and sharing research at conferences are a great way to learn about unpublished trends from experts in the field. I frequently consult with leading experts at these events to enlighten our research directives and paths, because a lot of new info and insights can be gained from these meetings.
Poster sessions are great ways researchers share their new and exciting work.

Thanks off sharing!

 

[Scipio]

Hi Dayblaze,

Thanks for your reply. Like you my disease is mild enough that I don't feel like I am sick at all, certainly not with a serious disease like Crohn's. Even though it is commonly used for CD, Pentasa (mesalamine) is a much better drug for UC. My doc is reluctant to try Pentasa on me because of research showing that in Crohn's it's not much better than placebo. And I sort of agree with him at this point. I want to take the mildest drug I can get away with, so to speak, but not one so mild that it doesn't really help.

I find out the results of my MRE next week, so hopefully that will make the path forward clearer. I'm guessing I will either get a round of Budesonide or continue with the current course of no treatments at all.

 

[Active@67]

Hi Scipio.....I too wasn't diagnosed until later in life. 51 yrs. I am now almost 67. I have had only 2 flare ups back in 2001 and 2002. I just had a colonoscopy and my GI Dr. found a small ulcer in the ileum. He put me on pentasa and 10 days into it I started to have a flare up. Cramping, diarrhea , nausea. Up until now I hadn't been on any medication. I stopped the pantesa and all symptoms stopped. I am really scared to take drugs. I think sometimes they do more harm than good. Just my opinion. I think Doctors just do what is standard not what is best for each individual.

 

[Scipio]

Update
MRE showed some thickening (but no narrowing) the small bowel in the terminal ileum consistent with mild Crohn's. CRP still normal. Other tests indicate mild anemia and reduced iron stores. Only symptom is mild ileal pain.

All of this consistent with mild Crohn's - which is pretty much what we already knew. Doc is prescribing 8 weeks of Budesonide for induction including a taper in the last 4 weeks. Followed by what? The best approach for maintenance of remission of mild Crohn's is still what puzzles me the most in this whole thing. He suggested either Imuran/azathioprine or intermittent retreatment with Budesonide.

Part of me says the side effects of say long-term azathioprine may well be worse than my very mild disease. So I'm tempted to go back to doing nothing. But the other part of me says that the mild disease could get a lot worse - damage could build up over time. I just don't know.

Any further thoughts anyone has would be much appreciated.

 

[ronroush7]

Welcome to the forum.

2

 

[JDTM]

Again, I suggest LDN, mostly because of the low side-effect profile, but also because I feel like it might do just as much (if not more than) 5-ASA meds like Pentasa. Not sure if your gastroenterologist would go for it as it's not "standard of care," but you might be able to make your case based on the fact that you have a "mild" diagnosis. (For me, I think my doctor went with it because I agreed to stay on Pentasa as well -- which, aside from the monthly cost, probably isn't doing any harm.)

 

[my little penguin]

Suggest Mtx
Aza/6-mp have increased risks of lymphoma in males which is not there with mtx.
Ldn - alters the brain's dopamine levels so much so pain meds are ineffective while on it.
Dopamine and mental mood disorders go hand in hand so there is risk there .

Mtx has a long proven history with RA patients.

5-Asa are equivalent to placebo and come with their own risks without any benefits for most .

Not an easy decision
DS had mild TI thickening on MRE at dx as well.
That was four years ago prior to the EIM of vasculitus/arthritis /eye inflammation/mouth ulcers etc..,
Sometimes the body decides the meds it needs even though the scopes show mild .

Good luck

 

[ellie]

Another "mature onset" Chronie here, now 61. First real presentation of was in 2005, when a bout of prolonged diarrhoea (uncertain cause =CD) led to SEVERE iritis, and a proper ankle arthritis.
Fast forward 5 years, more diarrhoea, this time with frank bleeding. Colonoscopy showed generalised colitis. The usual prednisone 40mg, decreasing doses, and commenced on 6mp, which to me felt like overkill, and caused distinct "foggy brain"..
Fortunately an older style physician suggested Sulphasalazine - am now taking 2.5gm daily, using topical steroid cream + topical anti-inflammatory gel on assorted grumbling joints...
Not quite "according to Hoyle", but am functionally stable, going to work, and colonoscopy a little over a year ago was macroscopically normal, and histologically inflammatory cells at upper limit of normal.
I do think age of onset is a significant factor... There was a recent article on Medscape talking about categorisation of IBD and age of onset/location. They seemed to be saying that colonic CD sits somewhere between UC and ileal CD, and that later age of onset tends to have a milder course.


HD