Pancolitis to no symptoms in 16 days?

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.

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.

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!

My UC has a few 'exceptions to the rule'. My ESR is normal even when I'm hospitalised with UC, and close to having my bowel removed. My CRP might rise to 10 but still low. A faecal calprotectin test is the most reliable way for me to know how bad my UC is (without having a colonoscopy).

I have pancolitis and to the eye it's patchy. It doesn't always start at the rectum, in fact I often have more problems on the right hand side, and it isn't visibly continuous, but my gastro has said that it's probably continuous at microscopic level. All biopsies across the years have supported the diagnosis of UC rather than Crohn's.

Some of us are just exceptions to the rule!