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Pancolitis to no symptoms in 16 days?

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Ulcerative Colitis
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missujen
New Member
Joined : Feb 2021
Posts : 2
Posted 2/16/2021 8:29 PM (GMT -7)
My 20 yo son began rectal bleeding on Nov 30. Dec 1 he had a CT - normal. On Dec 17 he had a colonoscopy. Doc said he saw inflammation and ulcers. Dx him with UC. Told him to take Lialda but to wait until the biopsy results come back "in case there is a surprise". He did have him start suppositories while waiting.

While still awaiting the biopsy results, he felt dizzy and was scared he was losing too much blood (still bleeding every day). He went to the ER. At this point he was still only pooping 1 - 2 times a day, not diarrhea, but not totally formed. The ER doc reamed him a new one for "not taking the LIalda" and told him to go home and start it. He did. Within hours, the cramping started. I found him in a fetal position on the couch, toes curled near tears. Two nights later the real problem started. He began going to the toilet every five minutes and it was all blood - no poop. In the morning, he placed a call to his Dr. and he said to go the the ER.

He gets to the ER and they do a CT. Tell him he now has pan colitis. They admit him. The ER doc said his previous dx was not supported by his history and physical, clinical studies, nor laboratory studies. This is when we found out the biopsy results from the colonoscopy did not find any histological changes, chronic inflammation or evidence of UC. Hmm. The ER doc said "Most likely infectious colitis". I just saw this on his record after ordering them yesterday - we were not aware of this until now. All I knew during his ER stay was what one doc said "You know, it is weird, his colonoscopy did not show inflammation".

He's admitted and placed in IV prednisone, flagyl and Cipro. The doctor kept me very informed, with discussions every day. He was great. Four days into his admission the doc said he may need to remove his colon. I asked the doc to think outside the box. I told him I had heard his colonoscopy had not shown any chronic inflammation - there was inflammation, but it had just started. . He said I was right. I also mentioned that NONE of his inflammatory markers were elevated - normal ESR SED rate, CRP and platelets. They had not done a calprotectin at this point. The doc decided to do another colonoscopy.

It took them another three days to get him in for his colonsocopy (even as an inpatient!!) A different doc did his colonoscopy. Biopsies said "chronic inflammation" - I am guessing since the inflammation had been there for a week at least (pan colitis symptoms) then it said chronic. The next day they send him home on oral prednisone. 60mg. They did do a calprotectin which came back at 2550 - but we were told the prednisone can cause that to rise, especially IV.

Every single one of his blood tests for inflammatory markers were NORMAL.

Fast forward to his 16th day post admission. He has literally no symptoms. Poop fully formed, no blood, no diarrhea, no cramping, no fatigue...he has now tapered down the prednisone to 20 mg. Still all good.

He did start Eleyta infusions. His symptoms disappeared prior to his first infusion. He has had two now. He will have another one on March 10 - then every 8 weeks for the rest of his life.

My concern is that it seems there is a possibility it may not be a "classic case" of UC or Pancolitis. I'm also concerned in that they asked him if he took Ibuprofen or Motrin. He said no. He did not realize Advil is the same. He tore his ACL in his knee last year and was taking it regularly - sometimes 800 mg.

Does pan colitis come on in less that three weeks from normal? Can it go away that quickly? I really worry about him being on these infusions long term - especially if this was caused by something other than IBD. Oh..he also was diagnosed with diverticulosis at the ripe age of 11 - totally verified by his docs and Stanford University. Never had an issue - but some of the pain he had with this was his left side - during his hospital stay and during some of the rectal bleeding. His first colonoscopy said his left colon was "Benign, normal mucosa".

If anyone has any insights, I would really appreciate it! Thank you.
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beave
Veteran Member
Joined : Mar 2007
Posts : 2164
Posted 2/17/2021 12:07 AM (GMT -7)
Sorry to read of his (and your) struggles with sickness and getting proper diagnosis and treatment. I know it's frustrating.

Where are you located? Still going to Stanford Med or somewhere else now?

I have a few comments.

1. ER docs are great at keeping a person alive but not so great at diagnosing and treating UC or Crohn's disease.

2. There is something called 'mesalamine intolerance,' which happens to about 1 out of every 25 people who try that class of medications. Symptoms get markedly worse instead of gradually improving. Your son may have mesalamine intolerance, which could explain why he got worse when he started the Lialda.

3. It's possible to go from hardly anything to pancolitis in three weeks.

4. It's possible for pancolitis to improve dramatically in three weeks, especially if the patient is put on steroids, but usually the *symptoms* improve a lot more than the actual colonoscopy findings (ie, put the person on high dose steroids, they'll feel better within a week or so, but their scope still would show problems). But yeah, sometimes even the scope can be clear. Unusual, but can happen.

5. NSAIDs could cause this but that too would be unlikely that they would cause such a severe reaction.

6. Have they done stool cultures, preferably *multiple* times, to rule out any and all infectious things they can think of, including c.difficile and CMV (cytomegalovirus)?

7. What do you mean by Eleyta infusions? Is that a new biosimilar that I'm not familiar with, or is it a typo?

8. Get copies of all test reports, colonoscopy reports, and biopsy reports for your own records.

9. It's possible to have UC with normal CRP and sed rate and platelets. It's, again, unusual, but it can and does happen sometimes.

10. Any family history of UC, Crohn's, other autoimmune diseases?

11. In summary, this could be UC but it could be other things as well.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 928
Posted 2/17/2021 3:50 AM (GMT -7)
Hi that all sounds very stressful. Good advice from Beave above.

I've had colitis for 6 years and I'm one of those people whose blood tests come back totally normal every time, i.e. no elevated inflammatory markers. It does show in my fecal calprotectin.

There are GIs and there are GIs... your best weapon in this is a GI who is expert in IBD and who you feel comfortable with.

I've not heard of the infusion drug you mentioned but the odds of being on any one medication for the rest of his life are small - and if he would be, it would be a good thing because it means his meds are working and he isn't suffering from adverse effects

New colitis treatments are coming out all the time and there is active research into the role of the microbiome which may in many years time lead to some curative treatment options. However it is something you're going to have to adjust to, that your son is most likely going to be taking some form of medication, whether that be tablets or infusions, long term.

Wish you luck and a lasting remission for your son.
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Ms2011
Regular Member
Joined : May 2020
Posts : 27
Posted 2/17/2021 3:15 PM (GMT -7)
How my UC came about was when my son brought home a bug from preschool. He, myself and his Dad got sick, he and his Dad got better but I didn't. Two weeks later I was seeing blood in my stool (though still formed), 2 weeks on from that I was having bloody diarrhoea and so nauseous I was surviving on a few bites of toast a day.
When I was scoped I was diagnosed with severe pancolitis and my GI wanted me to stay in hospital for treatment but I had two small children so I went home with a prescription for Flagyl and Budesonide and told to come back in 2 weeks. By the time I returned a fortnight later I was 90% better, no blood or urgency, back eating normally etc. I was then put on a maintenance dose of Pentasa which worked for 2 years.
When I was scoped again 6 months later and my colon was near perfect, my GI has in my notes that she actually thinks I had a severe bout of gastroenteritis which lead to the pancolitis and effectively 'switched on' the gene I had for UC.
So yes, I got pancolitis in 2 weeks and also got rid of the symptoms in 2 weeks.
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missujen
New Member
Joined : Feb 2021
Posts : 2
Posted 2/18/2021 8:29 AM (GMT -7)
Thank you for the great replies! Very informative.

I completely typo'd/desecrated the name of his medication. It is Entyvio. My bad. I better stop multi tasking!

I am located near Sacramento and my son is in AZ to go to school. Unfortunately, he has to come home for all treatments as Kaiser will not pay for outside care.

Good to know that pan colitis can come and go so quickly.

The reason I focused a bit on what the ER doc said was the hospitalist said the same thing - plus, during his hospital stay as he got worse the first week - was that I questioned the GI as to why none of his inflammatory markers were up, especially since it was so severe. Then I see the ER doc actually concurred with me as it is in his notes. The GI doc has been really good at listening - but he also has other colleagues he has to listen to. He wanted my son to stay in the hospital, as he still wasn't improving much, but the hospitalist said he "looks good enough to go home", and discharged him. So much for additional testing. His stool was tested once before discharge - then again a couple of weeks later. No leukocytes, no inflammation. Still no rise in anything else.

He did get sent for a second opinion to an "expert" within the Kaiser system - all she did was thank us for transferring to her service and she would want to see him again in a few weeks. We told her we were sent to her for a second opinion and after I asked two questions regarding the fact they saw no ulcers on the second colonoscopy, she said "those questions do not matter" and that we needed to focus on his treatment. She said given his GI issues as a child - he probably had UC for a long time. Now, I find that very strange, as his initial colonoscopy showed zero chronic inflammation, and no mucosal changes. He had mild colitis on the right side. HIs left side was "benign, normal mucosa" and both colonoscopies showed zero histological changes. It seems there would be something there if this had been a long term process. Also I failed to mention when he was 11 he had a CT at the ER. The diagnosis was mesenteric adenopathy/adenitis with enlarged lymph nodes on the right lower quadrant - plus, the diverticulosis and "some thickening of the transverse colon, probably due to constipation". Fast forward 9 years and his CT on Dec 1 was completely normal, with the exception of "some fecal matter residue, probably due to chronic constipation". His CT on Jan 6 was diffuse bowel wall thickening with mesenteric adenopathy and enlarged lymph nodes in the right lower quadrant. So...my thought is if he had the same thing at age 11 - if it was UC then, wouldn't' that first colonoscopy show it? I mean, this is 9 years later. Also just two years ago, he was still having abdominal pain issues - lots of left sided pain - and would have to run out of his classroom because he was randomly vomiting. If he hadn't had the issues as a child - I probably wouldn't think about much of this - but it all seems tied together somehow, so since the first colonoscopy was negative....????? I might think it is just his bad luck and he has two different issues, but the fact the CT at age 9 and the CT at age 11 were strikingly similar (except for the diffuse bowel wall thickening).

Thank you again for your replies - this is very helpful!
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beave
Veteran Member
Joined : Mar 2007
Posts : 2164
Posted 2/18/2021 8:51 PM (GMT -7)
This is a puzzling case, to be sure. I don't see the usual patterns & descriptions one would find with UC (it almost always starts at the rectum and has continuous inflammation from there upward, sometimes just affecting the rectum; sometimes the rectum and sigmoid colon; sometimes rectum, sigmoid, and ascending; sometimes rectum, sigmoid, ascending, transverse; and finally, sometimes rectum, sigmoid, ascending, transverse, and descending, in which case it's called pancolitis.)

UC almost always has blood and usually has diarrhea.

Your descriptions of the CT scan results are more in line with Crohn's Colitis, which often skips the rectum and affects segmental sections of the colon, with healthy sections in between.

CT scans are quick but scopes are generally much better at diagnosing and distinguishing between UC and Crohn's Colitis. Biopsies are often key evidence, but sometimes they too are indeterminant. They, along with the pattern of inflammation (continuous vs. segmental) help distinguish, but sometimes it's just about impossible to tell which it is.

Those CT scan results over the years make me wonder if he's had Crohn's for a number of years and it went undiagnosed for all that time. The CT at age 11 showing thickened transverse colon, the lymphadenopathy, etc, all point more to Crohn's than to UC.

The good news is that Entyvio is approved for either one.

Post Edited (beave) : 2/18/2021 8:54:46 PM (GMT-7)

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