From proctitis to pancolitis

My guess is that you were flaring for much longer than that but didn't have any symptoms. Perhaps what you thought was a stricture needing some stretching was a sign of inflammation instead.

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

CT can show thickening consistent with colitis or UC, and with other symptoms and medical history of UP, it is a good guess that this is UC pancolitis.

But only biopsies can confirm that. IF crypt cells are not distorted, I think efforts need to be made to look for infectious colitis. That is much more consistent with rapid increase in 2 weeks.

good luck

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11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
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Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

If it’s of any help, I went from proctitis to almost all of my colon fast. I used to have just proctitus, was in remission over a decade with clean scopes and no meds. Then what was a mild flare went crazy all the sudden. I had two scans close together that looked very different. I’m fine now with Stelara. So maybe that will give you some hope, if it turns out the Drs go in that direction. It’ll get better!

Mark....can you give us an outline of meds...you were off them for a long while? And when was the scope that confirmed remission...did yiunhave biopsies throughout your colon?

You were having issues long before 2 weeks from what I can remember...inflammation happens in increments, and for some it's not as easy to detect depending on what symptoms are ohysical and seen stool-wise.

A tough go for you now....have you talked with a surgeon just for information? If not...what meds are your option?

q

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*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symtomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!

Post Edited (quincy) : 9/29/2019 11:44:17 AM (GMT-6)

notsosicklygirl said...
I had proctitis when I was initially diagnosed and it ended up pancolitis fairly quickly. I also had flare-ups come on very quickly. It was stressful because I knew that at any sight of blood it could be a downhill progression into the unknown very quickly. I am sorry you're in the hospital. Did you get the results of your stool test? Are they going to do a scope to get biopsies?

Stool test isn't back yet, but I'm not hopeful. The public health stool test here is very limited. No flesh eating bacteria? Check. No shellfish bacteria? Check. No salmonella, listeria or e. coli? Check. It's not exactly comprehensive.

They won't be scoping me because my inflammation is too high and it will just create more problems. My medical history is such that scopes make me flare. Last time I was scoped during a flare, the inflammation exploded so much afterward that I had painful rectal prolapse that lasted for 3 months. Two words: never again.

My CRP went from 160 to just under 100 in a few days of IV pred. Hopefully the trend continues. My hemoglobin also continues to drop, but they are giving me an iron IV right now. It's that waiting game now.

I'm like you... by the time I notice bleeding in my stool, it's almost too late. The cascade starts and literally nothing will stop it. The GI at the hospital here suggested that I have a fecal calprotectin kit on hand for the future that I use to check my levels periodically, even if I have no symptoms. If the levels rise, then I should do prednisone ASAP. I like this idea because things can change VERY fast.

My mistake this time is that I waited to start pred. The reason is that oral pred severely irritates my stomach and GI tract, even if I take it with food. The drug itself makes me bleed more, so I try to avoid it and see if I can get my flare under control. Of course, I never do, and then I end up in worse straits.

This disease is very frustrating and I am doubly frustrated by how severe it is in my case. I hear about all these people with UC who complain about having to go to the washroom a lot at work, or make bathroom stops in their cars during rush hour. Meanwhile I'm like... wow, you can actually go to work???

Being released from the hospital tomorrow since I'm on the recovery trend, although I am still not well. CRP went from a huge 160 down to the 70's, and continues to drop. They will switch me from IV prednisone to oral tomorrow, which will be a big test. Oral prednisone is so hard on my stomach. They'll also give me a second iron IV (the first was earlier this week) to give me some resource for recovering hemoglobin. My hemoglobin is 11.8 (118) and dropping, but the drop is slower now.

I guess it's just a waiting game now. I was referred back to my GI to discuss possible new biologics, but my GI is a really mean human being so I may ask him to refer me to a second opinion. Visiting him always causes me major stress and my condition worsens.

Over all I am hopeful and optimistic. I am not used to my flares not going full tilt and almost killing me. Last time this happened I was a really scary looking skeleton and unable to walk due to extreme atrophy. I had to be wheeled around in a wheel chair. This time I've lost about 30lbs, but I can still walk and perform daily functions. So it's nice to see that it doesn't always have to be devastating.

The only question I have is -- why would pain increase as my inflammation decreases? As my CRP drops and my gut is less hot, the cramping is INSANE. I am on high doses of morphine to cope with this. The doctors think this is paradoxical... and that reduced inflammation should also mean reduced pain. It never works that way for me though.

Oligodar said...
There might be some kind of viral infection alongside your UC flare. I suppose that doctors tested you for bacterial infection and it was OK. If it is viral infection you can not do much. Just wait. What you can do is low residuum died but rich in calories. You need get energy.

I know that I have CMV, from a blood test... but I don't know if that's what's causing my flare. If it's a virus, how could I possibly get it diagnosed?

I have wondered if a virus causes my UC because my flares are so cyclical. Once a year exactly, and the flares last for about 2 months exactly... and are severe.

I think the only way to tell if it's CMV attacking your colon is with biopsies. From what I have read, if it is CMV it is extremely serious -- even life threatening. The only treatment is extremely powerful anti viral meds

I too carry CMV. Docs have checked my biopsies and it's not been active in my colon thankfully.

If you don't continue to improve, you might need to bite the bullet and get a scope so they can do the biopsies needed to rule out CMV colitis.

But since you are improving, it most likely is just a bad flare and not the CMV

Hopefully you continue to get better and the pred will hold you until you can come up with a new treatment plan.

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

Quincy -- for me I found out that I had CMV back in the early 90s when I got very sick with a mono like illness that wouldn't go away and after testing for everything they could think of I went to another doc who tested me for CMV and by that time I was getting better but the blood test was positive that I had CMV. A couple years ago I had my PCP doc do another test when I was sick with a flu like illness that wouldn't go away and I definitely carry the virus. I read somewhere that at least half the US population likely carries CMV but if it never is activated they never know. Once you have it it can go dormant, but it's always there

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

Wouldnt a stool sample or blood tests note if it was active at this point? Antiviral is an option to try....I don't understand why it's not being tried. Has it been discussed with docs while you were in hospital?

Hope it gets sorted soon.

q

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*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symtomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!

I've asked my GP if she will let me try an anti-viral. My flare is taking its usual course now... severe pain ramping up, unable to get out of bed, massive weight loss. Although, bleeding is slowing down at least. My bowel subjectively feels like something is gnawing at it. I know a lot of UC patients are non-responders to pred and don't have CMV, but I do have it. It doesn't make sense that my pain should be increasing.

One of the features of CMV colitis is the ulcers are much deeper. This morning my rectal inflammation was so bad that it was partly strictured. Then I took my morning prednisone and it shrank again.

noodlesnoodles, there is no maintenance medication they can give me, my body has rejected them all. It's prednisone or bust. Another reason why I suspect a pathogen. There's no real evidence that I had simmering inflammation prior to this. Scopes, biopsies and calprotectin showed I was in remission. Then this anal stretching non-sense happened and a flare got triggered.

The thing is, CMV and other herpes viruses are opportunistic. If you get an injury, sometimes the viruses go from dormant to attacking again. It would explain how such a minor rectal injury could lead to a full blown flare. Viruses are sneaky like that.

If they give me an anti-vlral and it doesn't work, I'm getting a colectomy. So sick of this crap. I need to rule out a virus anyway because I'm not getting a colectomy if a virus will just end up moving to my other organs.

The anal stretching was explained in another thread. I had anal and rectal narrowing from UC scars, making my stools narrow. A proctologist introduced me to anal stretching. This caused something to tear (I could feel it give way) and then it snowballed into a flare from there.

My posts aren't all over the place, you just haven't read them all thoroughly. I said I tried most biologics, just not the new ones (like xeljanz), but that my GI doctor said if I failed previous ones then the newer ones were less likely to help me.

The methods that worked for me last time, I don't feel like sharing because it's private and personal. Also I was attacked here by the same 2-3 people across multiple threads rather viciously simply because they disagreed with some claims I was making, and I no longer feel safe sharing those kinds of things. Please respect my choice.

I'm not bouncing all over the place, I am exploring ideas and options. When I flare I have to get creative because standard methods don't work. If I can't turn this around soon I'll be getting a colectomy, so I owe it to myself to try anything and everything to try and save my bowel.

If you have some suggestions I'd love to hear them, otherwise I can't spend precious energy rehashing my posting history so that you understand where I'm coming from. I have limited energy for posts each day. Thank you.

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Proctosigmoiditis dx 2015 with 1 major life threatening flare per year since
Waxes and wanes on yearly cycle -- remission vs. deadly flare
Sept 2019 remission ended with major flare, dx upgraded to pancolitis
Failed all meds except prednisone; prev tried Entyvio, Remicade, Humira
Allergic azathioprine, 5-ASAs, rectal meds