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The 1% of Crohn's: Mild cases

This week, I revisited the doctor who treated me 3-4 years ago, when I was first diagnosed. Back then, he insisted that Pentasa was like a band-aid, and that I needed 6mp, despite my case being pretty mild. Now that it's even more mild, 3 years later he says Pentasa could work. He said that I wouldn't even qualify to enter trials...so those studies that showed Pentasa is like a Placebo...were those of people like us, the 1% of really asymptomatic, mild Crohn's? Or is that referring to people with more severe (moderate) cases?
It's really strange that he says if I have trouble tapering off Entocort, then we'll add 6mp, when in the past including up to last month, all the doctors have jumped straight to 6mp...even though I'm mild!

#Confused. It's either I stick with this doctor in Miami (Crohn's and Colitis center) orrr go back to Mayo. 3 years ago I ran away from the Miami doctor because he said I needed Humira and 6mp and had me on 100 mg of 6mp. I went to Mayo, MN 3 months later for a second opinion and what do they find? NO INFLAMMATIO, elevated LFT, and said Humira is not necessary and that if symptoms return, restart 6mp or re-evaluate. Well, symptoms are not as bad as they were 4 years ago, but there is very very mild inflammation.
Up until 2 months ago, I've WANTED the least harmful approach! BUT it clicked that the ongoing inflammation is asking for trouble...which is why I'm afraid Pentasa is only....a band-aid?

It's a blessing to be in the mild/asymptomatic category, but also more difficult...
 
What did your first scope show? Do I understand this correctly- you were treated between scope one and scope 2? How much time between scope 1 and scope 2 and how much time were you OFF 6MP? How do you know you have mild inflammation now?
 

Tesscorm

Moderator
Staff member
Ugghh, that's a tough question. :ghug: I don't have crohns but my son does. Other than when he was diagnosed, he rarely shows outward symptoms. My son's first (only) flare was treated with exclusive EN (not a med, only a nutritional formula) and the EN formula, on a supplemental basis, was used as his only maintenance med for 1.5 years. During this time, he showed no symptoms, ate anything with no issue, played on two hockey teams with no fatigue, etc.

However, while he showed no symptoms and his labwork was decent (ie CRP 6.5 and HGB only a bit below normal), MREs showed 20-30 cm of inflammation and scopes confirmed inflammation. Have you had a recent MRE or scope? How is your doctor defining and determining 'mild'?

I think it also depends on where your inflammation is located. I believe 5ASAs work better in certain areas of the large and small bowels and my understanding is that the 5asa drugs are a 'topical' drug, in that they work on the surface of the intestinal wall. I've read that, in mild crohns, the thought/hope is that this may be enough to control little to no inflammation, however, crohns inflammation generally extends into the wall (opposed to UC which is only on the surface) and, if this is the case, the 5asa drugs may not work as well.

Why did you mention entocort? Are you using it now, or even periodically, to control inflammation?

If you were to go off 6MP, how would you be monitored? ie which tests, how often? I think I'd be more comfortable going off 6MP if I knew I was being watched diligently (regular MREs, etc.). Frustrating because some people can have simmering inflammation for a long time with few long term consequences and with others, serious issues can come on quickly. :ymad:

As far as your question if the 1% were part of these studies... Good question but I'm guessing the studies were NOT done on the 1% only. I imagine some of the 1% may have been included in the studies but, if your figure of 1% is correct, even if they were included , their impact on results would only count for approx. 1%. :(

:ghug:
 
What did your first scope show? Do I understand this correctly- you were treated between scope one and scope 2? How much time between scope 1 and scope 2 and how much time were you OFF 6MP? How do you know you have mild inflammation now?
I've seen 7 doctors...I feel like I can't trust anybody lol. Here's a summary:

April 2010-ER/Hospitalization for abdominal pain. 1st scope, inflammation in terminal ileum. Discharged with ileitis.
June 2010-Doctor back home gave me Entocort.
July 2010-June 2011-2nd doctor back at school in Miami, wanted me on 6mp, I refused for about 1.5 months, only on Pentasa. Was put on 100 mg of 6mp, taken sporadically. MRE in April 2011-showed inflammation. Doctor wanted 6mp and Humira. Ran away to Mayo in Rochester.
Sept. 2011-Mayo Rochester-2nd scope, no inflammation, MRE-no inflammation, + C Diff. Said to resume 50 mg if symptoms reappear, or start.

January 2012-Mayo Jax, 6mp.
Feb 2012-March 2013-75 mg of 6mp (from 50) and tapered Pentasa. Stopped meds somewhere between Late 2012 to early 2013. Felt great, med-free from then until May 2014, when I went for my 3rd scope to make sure everything was ok. Mild inflammation (reddening) was seen, prescribed 50 mg 6mp. Again, I refused, since I had always been pretty asymptomatic.
June 2014-2 weeks after LDN, CT Scan showed very mild inflammation.
June 2014-Entocort 6mg and SCD; stopped LDN in July.
August 2014-Doctor #7 did Upper Endoscopy, negative except some duodenal erosions.
2 days ago-went back to my Miami doctor who was surprised pretty much that I hadn't progressed and thinks Pentasa might be enough. THOUGH he said that if i had symptoms, to choose between 6mp and an anti-TNF...but i'm pretty asymptomatic.

So i've had 3 scopes so far. 2 CT scans. and 2 MREs.

I know...it's like i'm seeking a refuge, seeking help now that 4 years later I FINALLY accept the diagnosis, but can't trust anybody. I mean, had I not run away from Miami doctor, who knows what I would have ended up with from 6mp and Humira :(

I live in Tampa, which is 4.5 hours from Miami, and about 3.5 from Mayo...
 
What do the biopsies show? That really is confusing and I can understand why you don't know what choice to make. However, congrats on mild disease--that is a good thing!! Where was the inflammation on the CT.

Are the drs 100% sure you have Crohn's? It sounds like it from the treatment offered, but your presentation is very different from others.
 
So the first colonoscopy had the "typical" cobble-stone appearance in the TI. Biopsies showed no granulomas, but chronic inflammation and the IgA was 94.1, apparently 4 times what it should be but neg ASCA.
Doc 1 said it was Crohn's. Went to Miami for 2nd opinion-agreed with Crohn's.
Went to Mayo for 2nd opinion-after he looked at the biopsy slides, he said it is consistent with Crohn's.
I know, and I've always questioned :/ But this last scope showed some inflammation in the TI and now microscopic in the ascending colon..so from what I understand, ppl don't usually have inflammation in their colon...unless it's MAP or Crohn's...
:/
Inflammation in the TI was seen in the CT, and lymph nodes in that area.

It feels like no matter what, there is a double-edged sword :/

Thank you :)
 
Ugghh, that's a tough question. :ghug: I don't have crohns but my son does. Other than when he was diagnosed, he rarely shows outward symptoms. My son's first (only) flare was treated with exclusive EN (not a med, only a nutritional formula) and the EN formula, on a supplemental basis, was used as his only maintenance med for 1.5 years. During this time, he showed no symptoms, ate anything with no issue, played on two hockey teams with no fatigue, etc.

However, while he showed no symptoms and his labwork was decent (ie CRP 6.5 and HGB only a bit below normal), MREs showed 20-30 cm of inflammation and scopes confirmed inflammation. Have you had a recent MRE or scope? How is your doctor defining and determining 'mild'?

I think it also depends on where your inflammation is located. I believe 5ASAs work better in certain areas of the large and small bowels and my understanding is that the 5asa drugs are a 'topical' drug, in that they work on the surface of the intestinal wall. I've read that, in mild crohns, the thought/hope is that this may be enough to control little to no inflammation, however, crohns inflammation generally extends into the wall (opposed to UC which is only on the surface) and, if this is the case, the 5asa drugs may not work as well.

Why did you mention entocort? Are you using it now, or even periodically, to control inflammation?

If you were to go off 6MP, how would you be monitored? ie which tests, how often? I think I'd be more comfortable going off 6MP if I knew I was being watched diligently (regular MREs, etc.). Frustrating because some people can have simmering inflammation for a long time with few long term consequences and with others, serious issues can come on quickly. :ymad:

As far as your question if the 1% were part of these studies... Good question but I'm guessing the studies were NOT done on the 1% only. I imagine some of the 1% may have been included in the studies but, if your figure of 1% is correct, even if they were included , their impact on results would only count for approx. 1%. :(

:ghug:
Thank you Tesscorm! I'm glad your son is doing well! When he was flaring, was it significantly symptomatic? Or still mild? I've never had EN, but it seems it would also work topically, just to quiet down the current inflammation? Ohh see that's an issue-silent inflammation :/

Yes-I had a scope May of this year (inflammation in the TI and now ascending colon had microscopic inflammation). I guess since I don't have symptoms, no EIs, and not much inflammation...? I feel like I don't have a doctor, actually. The last long-term one I had was in Miami. Since moving back home, I went to Mayo in May, 2 doctors here in Tampa, and one 2 days ago in Miami again.

That's what I've read too! At the same time, I hear of people taking it with no strictures or scarring, and they are fine on Pentasa alone. That's what I wanted 4 years ago lol. Now I've matured and learned more, and NOW I'm the one who is different, wanting to prevent future problems.

Yes, this is the 2nd time I've been on Entocort in 4 years. I've been taking 6mg since June of this year, will taper off next week now that I'm on Pentasa.

I agree with you. Either way, with or without 6mp, I'd want to be watched like a Hawk lol. Did your son use Pentasa at any point? I see he is on Remicade...if he's mild, how come they put him on that? And no, it was a percentage I made up...since it feels like 99% of Crohnites have the same symptoms and problems...
 

Tesscorm

Moderator
Staff member
Wow, you have gone through a bit of a runaround :)

When my son had his first flare, he had classic symptoms.... had d in December but then went away completely, then the rest of the symptoms started and gradually worsened - anemia, paleness, fatigue, heartburn, fever, diarrhea, weight loss... March and April we were going to GP, running tests, waiting for 'bug' to pass, etc., we finally took him to children's hospital in May and he was tentatively diagnosed in about 2 hours! :yfaint: He was given Flagyl thru IV while he was in hospital (about a week) and then started on exclusive EN. He also used nexium, initially for the heartburn but then, when he had EN, he used a naso-gastric tube and this gave him heartburn (ie no heartburn when he didn't use it). Throughout 1.5 years, even though MREs showed 20-30 cm of inflammation, he had minimal, if any symptoms (and even these were rare...) - certainly not indicative of this amount of inflammation. When we transferred to an adult GI, he felt very strongly that the simmering inflammation would eventually lead to consequences, perhaps even surgery. He strongly recommended remicade. My son did not want to risk surgery or other complications and agreed with GI. However, once he attained clinical remission (no outward symptoms but still inflammation, etc.), before and since remicade, he's had no outward symptoms. Like you said, very grateful for this but can sometimes make decisions tougher.

Apparently, there is still some question as to how EN works. It is known that it provides all necessary nutrition, due to it's formulation, it's very easily absorbed so allows for bowel rest, it has healing properties and no side effects. Way back at dx, when I knew nothing about any of this :eek:, his ped GI explained it this way - the 'bad' bugs cause the inflammation to begin, exclusive EN feeds the good bugs but starves the bad. Very layman's explanation. :lol: I do think it (whether its the nutrition, healing properties, etc.???) helps my son; even now, on remicade, he continues to drink one or two Boost shakes per day.

I am FAR from being a doctor but, I would think if you've needed entocort twice in four years, your inflammation is fluctuating. And, you say you started 6MP in June - I don't have experience with 6MP but, my understanding is that it can take 3 months just for the 6MP to reach therapeutic levels?? As I said, I only know what I've learned since my son was diagnosed but, I don't really understand why your doctor is taking you off 6MP after such a short time?? Perhaps ask your doctor about this?? Has your GI tested if 6MP is at appropriate levels? It could be that you reached the necessary levels very quickly, sooner than the average??

It would probably also help you if you find a GI with which you can have consistent, regular follow-ups. Different GIs may have different ways of treatment, different levels of comfort with inflammation, risks, etc., and I think it would be easier for you to deal with one and go along a consistent path. My son's ped and adult GIs had totally different ways of thinking - taking us from one extreme to the other! :yfaint: Confusing and leaves you not knowing who to believe!! Of course, not suggesting you should ever stay with one you don't trust or like though! :)

Hope some of that helps! :)
 

Catherine

Moderator
My daughter is now 19 years dx at 16 years.

At 12 her iron levels were very low and didn't response to iron supplementation. She had periods of severe pain lasting 24-48 hours. Over the next 3 years or so. No bowel symptoms.

At about 16 years an ultrasound showed a section to bowel which was different. Severe pain periods got closer together. Hemoglobin dropped to 10.

In the two months before dx lost 14kgs and hemoglobin to 9. Still no bowel symptoms.

Currently taking imuran now treating a flare with no symptoms. Faecal calprotectin now 398.
 
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Jennifer

Adminstrator
Staff member
Location
SLO
But this last scope showed some inflammation in the TI and now microscopic in the ascending colon..so from what I understand, ppl don't usually have inflammation in their colon...unless it's MAP or Crohn's...
:/
Crohn's can cause inflammation from your mouth to your anus. It may or may not only affect you in one area yet generally affects the surrounding area so it's possible that you have inflammation going from your ascending colon to your ileum (not uncommon).

I agree with starting out with using both 6MP and Pentasa (and sticking to it, they don't work if you stop taking them or don't take them regularly) and see how you do since you aren't mentally prepared to try stronger medications yet (the top down approach has proven to be very effective in getting inflammation under control quickly and keeping it under control as no amount of inflammation is acceptable). Overall though it sounds like 6MP hasn't been working too well for you (although I'm not sure if that's because your dose changed so often and you didn't take it on a regular basis).

Even if you don't have symptoms you clearly have inflammation that isn't under control. If you continue along the path of treating your condition by only paying attention to your symptoms then it's very possible that you'll be back to square one, in the hospital with extreme pain. When inflammation is left untreated it creates scaring and can create a stricture and can also cause the intestinal walls to become thinner over time which puts you at a greater risk of perforation.

The terms "mild," "moderate" and "severe" Crohn's only have to do with how the disease is affecting you right now but that doesn't mean you can't go from mild to severe or moderate to mild etc. http://www.crohnsforum.com/showthread.php?t=51899 Crohn's needs proper treatment. Based off of your symptoms your disease could be classified as "moderate" not "mild" because you have failed to respond to the treatment given to you in the past (proof is in the scopes showing active inflammation while on medication). I hope you find something that works for you. :)
 
Crohn's can cause inflammation from your mouth to your anus. It may or may not only affect you in one area yet generally affects the surrounding area so it's possible that you have inflammation going from your ascending colon to your ileum (not uncommon).

I agree with starting out with using both 6MP and Pentasa (and sticking to it, they don't work if you stop taking them or don't take them regularly) and see how you do since you aren't mentally prepared to try stronger medications yet (the top down approach has proven to be very effective in getting inflammation under control quickly and keeping it under control as no amount of inflammation is acceptable). Overall though it sounds like 6MP hasn't been working too well for you (although I'm not sure if that's because your dose changed so often and you didn't take it on a regular basis).

Even if you don't have symptoms you clearly have inflammation that isn't under control. If you continue along the path of treating your condition by only paying attention to your symptoms then it's very possible that you'll be back to square one, in the hospital with extreme pain. When inflammation is left untreated it creates scaring and can create a stricture and can also cause the intestinal walls to become thinner over time which puts you at a greater risk of perforation.

The terms "mild," "moderate" and "severe" Crohn's only have to do with how the disease is affecting you right now but that doesn't mean you can't go from mild to severe or moderate to mild etc. http://www.crohnsforum.com/showthread.php?t=51899 Crohn's needs proper treatment. Based off of your symptoms your disease could be classified as "moderate" not "mild" because you have failed to respond to the treatment given to you in the past (proof is in the scopes showing active inflammation while on medication). I hope you find something that works for you. :)
Sorry for being MIA on here for awhile! Thank you Jennifer, but to clarify (sorry for the miscommunication) I took myself off 6MP around Fall 2012 and took nothing until June 2014 this year (Entocort). When I had the colonoscopy in May 2014, I was on nothing.So the mild inflammation seen is after being med-free for almost 2 years, and even then...pretty much no symptoms. In the past I took 6MP in 2011, but my LFT were elevated when I went to Mayo Rochester a few months later for a second opinion and there was no inflammation, not even a hint of it...so it's possible the 6mp shut it down. So of course, feeling ok, I was reluctant to take it for the next year, so I stopped completely in 2012. However, i'm more an asymptomatic Crohnsie which makes it a very difficult decision...especially when you don't feel anything but the side effects from the meds :frown:

I started 50 mg 6MP last night and Oh my Gosh...I slept ALL day today :( I don't remember being that sensitive with the first dose a couple years ago! I tapered the Entocort Oct. 9th and had been on Pentasa 2g starting Sept 17th...to be honest the only thing I have (besides RUQ pain that is intermittent--negative GB problems on US, though stones had been found in the past) is mild RLQ soreness by the belly button. That's since tapering Entocort, though I am on Pentasa 2g and will continue it.

Does the energy come back? I mean, I swallowed 1 pill of 6MP and I don't feel so good lol. Yesterday and before I have felt great! Part of me wonders whether my case would be so bad if I just took Pentasa (it didn't progress in the 2 years I was off meds..)

Sorry, venting. Confused, frustrated the meds are causing problems when I have felt great -_- You're right tho...
 

Jennifer

Adminstrator
Staff member
Location
SLO
The fatigue should start to go away with time as you get used to taking it so yes your energy should come back. Before trying Pentasa alone I'd get your current inflammation under control first as it's not the best treatment for Crohn's disease.

In patients with mild disease, mesalamine is used as monotherapy and it is difficult to predict which patients will do fine on mesalamine monotherapy for a prolonged period of time and which patients will develop a relapse. In patients with moderate to severe Crohn's disease it is felt that other therapies, such as corticosteroids and biologic therapies, are more effective for inducing remission (1). There are at least four studies (2-5) that report
a benefit of maintenance therapy with 5-ASA in quiescent (inactive) Crohn's disease.
http://www.crohnsforum.com/showthread.php?t=50253
 
I was diagnosed around 6 years ago after having symptoms for a year previously. I am also mild and was put on Pentasa immediately. I have had no problems with it, and am primarily asymptomatic apart from the odd flare up for which I go from a half dose (4 tablets) to a full dose (8 tablets) and diet modifications which seems to clear it up okay.
 
I was diagnosed around 6 years ago after having symptoms for a year previously. I am also mild and was put on Pentasa immediately. I have had no problems with it, and am primarily asymptomatic apart from the odd flare up for which I go from a half dose (4 tablets) to a full dose (8 tablets) and diet modifications which seems to clear it up okay.
Keita, is your doctor watching you closely? Did he/she ever recommend 6MP since inflammation can be "silent?" Is Pentasa all you've ever taken?
 
To be honest I've never been told about any other medications, only that they were options if I didn't respond to Pentasa. Pentasa is all I've taken - and since Pentasa clears up the symptoms I haven't ever been referred back to the hospital for another colonoscopy, and I don't really see my doctor much (but that is my fault as opposed to theirs).

At one point I just stopped taking the pentasa for a couple months since I was doing well and I'd had no symptoms in a long time - but this was promptly followed by a flare up so I know I need to keep taking it.
The doctor did say that if flares get persistent she will send me back for another look at the hospital, but so far I've been very fortunate.

I wasn't aware of 'silent' inflammation, that makes it very difficult to tell how you're actually doing..
 
When I was first diagnosed I was put on Pentasa. I've gone through almost every drug but I felt that I could try it and if it didn't work or the side effects were bad I could always stop it. If you start the Pentasa you always have the option to come off it at any time. It can be rather confusing especially when you can't find a doctor to trust. I'm in Orlando and have also been to Mayo. I spent the last ten years finding a GI that I felt has my best interest above all else and once you find that doctor you'll be able to trust their opinion. If you don't trust your doctor's advice I'd say keep searching for another one. Good luck :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
I was diagnosed around 6 years ago after having symptoms for a year previously. I am also mild and was put on Pentasa immediately. I have had no problems with it, and am primarily asymptomatic apart from the odd flare up for which I go from a half dose (4 tablets) to a full dose (8 tablets) and diet modifications which seems to clear it up okay.
Keita did your GI instruct you to take only half of your dose unless you're not feeling well then switch to your full dose? That won't control your inflammation. Even small amounts of inflammation over time builds up scar tissue which narrows the intestines over time and can lead to other complications. No amount of inflammation is acceptable.

Usually people have scopes done every 2-5 years so if your last scope was 6 years ago then it's definitely time for another one even if you have few to no symptoms or even if you're in remission (this also helps to screen for colon cancer).
 

Lady Organic

Moderator
Staff member
I think you are making the good decision to take the 50mg purinethol. Even if your inflammation is mild your pattern is recurring in short amount of time, and as other posters mentionned, ongoing chronic inflammation can lead to complication and this can also increase risks of cancers. 50 mg of purinethol is the minimal therapeutic dose and may be just well for your case. I am hoping the fatigue issue with it will reverse soon. I never experience this side effect on purinethol. 50 mg was not enough for me, I had to be on 75 mg. It kept me in remission for 6-7 years until i decided to stop it, (contrary to my GI advice), I now regret that time...
 
Keita did your GI instruct you to take only half of your dose unless you're not feeling well then switch to your full dose? That won't control your inflammation. Even small amounts of inflammation over time builds up scar tissue which narrows the intestines over time and can lead to other complications. No amount of inflammation is acceptable.

Usually people have scopes done every 2-5 years so if your last scope was 6 years ago then it's definitely time for another one even if you have few to no symptoms or even if you're in remission (this also helps to screen for colon cancer).
Hi Jennifer,
Yeah, they did. And I am going through a flare up at the moment (life stressors and recent poor diet would be big contributors I would say). I'm eating very carefully, and exercising daily, and taking full daily dose of pentasa and iron tablets. If it doesn't clear in a week I will definitely be going back to my GP, and yes it will probably be time for another scope...
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Jennifer,
Yeah, they did. And I am going through a flare up at the moment (life stressors and recent poor diet would be big contributors I would say). I'm eating very carefully, and exercising daily, and taking full daily dose of pentasa and iron tablets. If it doesn't clear in a week I will definitely be going back to my GP, and yes it will probably be time for another scope...
GP? You don't have a GI?

I've never heard of a doctor telling someone to only take a half of a dose until they start to feel unwell. I'd find a new GI as soon as possible.
 
Well, I will be moving cities soon - so I will need to find a new GP and GI. I did have a GI here but I haven't seen or heard from them in years, I think I was discharged once they got the inflammation under control.
 
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