Undiagnosed Crohn’s - diagnosed collagenous colitis

Undiagnosed Crohn’s - diagnosed collagenous colitis

Hi all,

I’m new to the forum. Thanks in advance for reading this and providing me any insight you can.

I am 39 y.o. Female. Last summer, I was diagnosed with collagenous colitis. Went on a 3 mos round of Entocort, went into remission, all was better in my world. Started flare up again shortly after stopping Entocort, at the beginning of 2018. Since last spring, I have involuntarily lost 55 lbs, I’m now 6’0”, 174lbs. I have been “tolerating” D and abdominal pain all year long. I started some left over Entocort mid-summer when D was at its worst, and my body was absolutely non-responsive to it.

Labor Day weekend, went to ER for worst abdominal cramps I have ever had, D has been violent and watery, up to 10x a day. ER did CT, which returned non-remarkable. For follow up, I went to GI doc again, and told him that Entocort wasn’t working. He’s done Lactoferrin test and iFOTB, both of which I came back positive for. I came back negative for any bacterial or viral infections, but the occult blood and leukocytes in my stool concern me. Full CBC panel returned with high monocytes, but rest of blood work returned normal, including normal CRP. My GI doc suspects I might have Crohn’s, but he is baffled on why the Entocort isn’t working. I just think I am severely flared up. Cholostrymine gave me a horrible reaction (abdominal pain that put me crying on the bathroom floor), so I stopped it. Hyoscyamine works well, but the D is still relentless. Doc won’t put me on prednisone until he sees colonoscopy results.

I am scheduled for my second colonoscopy in October, and I am wondering what could be causing the occult blood and inflammation in stool if my CBC returned normal except for the high monocytes? Does this sound like Crohn’s? I certainly feel like I have it, all the symptoms are there, but my colonoscopy from last year looked pretty normal aside from the collagenous colitis diagnosis. Could it be a misdiagnosis? Does this sound like Crohn’s to you guys?

Thanks for the insight.

Cmducks

Hi Cmducks,
What signs and symptoms you describe are certainly akin to what you would expect from Crohn's, but the fact that you failed to gain a positive response the second time you took Entocort is surprising.

Perhaps the dose that you took was insufficient to control the flare? No wonder your doctor is baffled. I just ponder whether you might have the same negative reaction to prednisone too. There is something else that caught my attention, that being that your CRP have been within normal parameters. I would have thought that there would be evidence of inflammation in the specimens.

With any luck, your forthcoming colonoscopy might provide a clearer picture. Occult blood too, is interesting and seems to maybe point to the colon , rather that the ileum.

If it is any consolation, it took as many other of the forum will relate, several years before my quack was prepared to diagnose CD! That was based purely on the basis that the histopathology results from biopsies that were considered the be 'atypical'. Finally, after a surgical resection he was happy to slap me with a confirmed diagnosis.

I do hope that much more is known come October. Please take care and keep us up to date.
Cheers,
Merv

Hi Merv,

Thanks for the reply. Colonoscopy can’t get here soon enough, it’s next Monday, so hopefully it will reveal some answers. To answer your question about the Entocort, I was taking just the normal dose I started out with on the first round: 9 mgs for a month, 6 mos for a month, 3 mos for a month. Just got through 6 weeks of it before my doc told me to stop as it wasn’t doing anything. I think he’s getting ready to put me on prednisone after the colonoscopy? Again, yes, the positive iFOTB and positive Lactoferrin results have me worried, but the normal CBC except for monocytes has me confused. I’ll let you know how things turn out; I just want to feel better!

Cmducks

Hi guys,

So, follow up: had my (2nd) colonoscopy, and now I’ve been diagnosed with Lymphocytic Colitis, all pictures reported normal mucosa. So, I am a little perplexed; I was diagnosed Collagenous Colitis last year. One can have both conditions?

The GI doctor put me on Entocort again, and doc told me to call triage nurse if it didn’t work within 2 weeks.

As I mentioned in my last post, I took EC for 6 weeks through mid-September, and it didn’t work at all. Now, it’s been 3 days since I started it again, and I’m already responding to it, which is great. I am still having abdominal pain, and rectal pain, but the D has momentarily subsided—thank God I get a break from that!

My concern: I have read that both versions of microscopic colitis present with non-bloody, watery D. My most recent IFOTB test was positive for occult blood, of which the source was not discovered in the colonoscopy—could it be in the small bowel?

Should I still push GI to have a look at the small bowel with endoscope and/or pill cam? I am sensing that my GI just wants me to take the Entocort as a rescue drug and leave him alone. I am also sensing that I will flare right back up once I am off the EC, like I did before when I was first diagnosed.

How do I continue to (gently) push my GI be fully examined for the occult blood and the abdominal pain? Should I wait to see if the D returns when I taper to 6mgs and then 3 mgs of Entocort?

Thanks for your help and support, forum mates!

Cmducks

Cmducks said:

Hi guys,

So, follow up: had my (2nd) colonoscopy, and now I’ve been diagnosed with Lymphocytic Colitis, all pictures reported normal mucosa. So, I am a little perplexed; I was diagnosed Collagenous Colitis last year. One can have both conditions?

The GI doctor put me on Entocort again, and doc told me to call triage nurse if it didn’t work within 2 weeks.

As I mentioned in my last post, I took EC for 6 weeks through mid-September, and it didn’t work at all. Now, it’s been 3 days since I started it again, and I’m already responding to it, which is great. I am still having abdominal pain, and rectal pain, but the D has momentarily subsided—thank God I get a break from that!

My concern: I have read that both versions of microscopic colitis present with non-bloody, watery D. My most recent IFOTB test was positive for occult blood, of which the source was not discovered in the colonoscopy—could it be in the small bowel?

Should I still push GI to have a look at the small bowel with endoscope and/or pill cam? I am sensing that my GI just wants me to take the Entocort as a rescue drug and leave him alone. I am also sensing that I will flare right back up once I am off the EC, like I did before when I was first diagnosed.

How do I continue to (gently) push my GI be fully examined for the occult blood and the abdominal pain? Should I wait to see if the D returns when I taper to 6mgs and then 3 mgs of Entocort?

Thanks for your help and support, forum mates!

Cmducks

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G'day Cmducks,
This is a bit of a conundrum! While in a past life I was a senior RN I, hesitate to proffer too much advice. After 25 years of Crohn's I have some doubts about the capabilities and commitment of some gastroenterologists. I am lucky to have a good GI at present.


Clearly, I don't know where your guy is coming from. As you say you respond positively to corticosteroids, that is fair indication that your covert haemorrhaging is then emanating from the ileum. If this medico is worth his salt he should have scoped past the ileocecal valve to examine the distal section of the small intestine.

Take a tip, my friend, many doctors need more than a gentle shove. Just remember that it is your body, quality of life and money that is at stake. Not their new Audi! These medical plumbers and drainage engineers are no closer to the Almighty than you or I.

Persevere and Take Care,
Merv

Hello again!

Update, I was responding to the Entocort, for two days it worked. Now the D is back, just not as often nor violent (but still urgent, and still D).

New presentations as well: visible blood in stool (darker in color), heartburn, and inflamed fast buds on tongue. I guess I will call my GI back next Thursday to inform him that EC is NOT WORKING again!

He mentioned MRI or Prednisone is the next step since we are running out of options. What are my remaining options if I don’t respond to prednisone? Biologics?

Cmducks

Prednisone is in the same family as Entocort, so if you aren't responding to the Entocort, you will probably have a similar experience with Prednisone. And you don't want to be on either one long term. I'm in the camp where Entocort reduced the symptoms I was having, but they didn't go away entirely and I didn't consider myself in remission.



Honestly, if it were me, I'd get a copy of my records and go see a different GI doctor. I know treating diseases like Crohn's and UC is not an exact science, but not all GI doctors see it that way. What works for one person might not necessarily be as effective for another with the same condition.

I think that is very sound advice from M01. Taking corticosteroid (Prednisone) or its companion glucosteroid ( Budesonide/Entocort) is really at best a stop gap ( no pun) measure.

Hopefully another specialist will engage in a little more creative thinking in terms of you diagnoses. If , as you originally suspected you might have Crohn's, then it is wise to act now. The last thing you need years of uncertainty and end up with strictures and possibly fistulae. While it is not pleasant ,at least you know what the score is and learn to live a life around the problem.

My personal philosophy is that I had close to half a century of good health. My journey started 24 years ago! I think of youngsters facing a life time of this curse and consider myself to have been lucky! I am just sorry that so many trees had to be sacrificed for my supply of toilet paper!

Kind Regards (and good luck with a new GI),
Merv

Thanks guys!

I was thinking about getting a second opinion too. For the record, been on Entocort again for two weeks now. It continues to slightly reduce the D symptoms, but it’s still there, 4x a day, and with all the abdominal pain too, and visible blood some days.

Called GI doc, and he referred me to an infusion clinic specialist to review my case, as well as scheduled me for an MRI in Nov.

Maybe now he will find something? I am going to contact the nurse to see if I need to continue the Entocort still. I have been working from home for a month now, which has been a blessing on my stress level, but I do need to go back on site eventually. Just want flare up to be controlled first.

Staying on Entocort that “sort of” works does help, as well as symptom-only meds: pepto, Imodium, etc., but they make me sick to my stomach, and then I don’t eat much—makes for a very uncomfortable work day. I need a med that will quell the actual problem, not just put the symptoms at the wayside for a bit.

Thanks again for your guidance and support of my quest of restored gut health (if I ever get there).

I’ll keep in touch.

Cmducks