Intro / Canasa & Hemorrhoids Question

I've been meaning to do a little intro post here now that I've been officially diagnosed but haven't gotten to it yet. [IF YOU WANT TO SKIP MY BACKGROUND, MY QUESTION IS IN THE THIRD PARAGRAPH BELOW] Long story short - I posted on here a few years ago when I was initially being evaluated for UC. I was seeing a great PA and throughout 2015 and 2016 he ran all the tests. My bloodwork always showed inflammation and my stool tests showed WBCs, but the colonoscopy, biopsies, abdominal ultrasound, and CTE came back normal. Finally in Feb 2017 I got much worse and had a capsule endoscopy in late March 2017, the conclusion of which was "Suspected Crohn's Ileocolitis." The cam showed small aphthuous ulcers in my jejunum and severe inflammation of the ileocecal valve. They scheduled a colonoscopy for April 14 and started me on prednisone to get me through till then. I started at 30mg but within 5 days ended up in the ER for dehydration and bleeding so they bumped me up to 40 mg. The prednisone worked great for my constant LRQ / periumbilical pain but was "meh" on working for the diarrhea/frequency/urgency/cramping while going issues. When I woke up from the colonoscopy they told me my diagnosis was Ulcerative Pancolitis. When I met with my doctor this week, she explained that she made the diagnosis based on the fact that my TI appeared normal and had normal biopsy (she said even with being on the prednisone for several weeks, Crohn's would show up on the biopsy if I had it) and the fact that the inflammation in my colon is not patchy. When I asked about the capsule endoscopy results (the report was generated by another doctor in the clinic - I was told my doctor doesn't read capsule endoscopy video), she essentially said she was dismissing them. So I'm not convinced it is UC for sure, but that is how we are treating it right now. I'm on Apriso 4 x daily and 30 mg of prednisone at the moment (tapering to 20mg next week).

MY QUESTION: I've been using Rowasa enemas since the beginning of April. I don't love them and could rarely retain them all night but it was doable. However, my stool has started to solidify a bit this week now that I'm on the Apriso and that peanut-butter consistency stool is killer on my hemorrhoids (I know this from past experience). I'm not bleeding a ton from the hemmies (I think prednisone helps a bit with that inflammation as well), but it is too painful to insert that jagged plastic Rowasa applicator with the hemmies being so angry now. I told my doctor about this and she switched me to Canasa suppositories 1000mg once at night. I'm very happy about this because I have no issue using suppositories as I've been doing it with Anusol for years for hemmies.

However, I also asked if it was OK to use anything to treat the hemmies in the daytime (my Anusol suppositories, or Prep H suppositories - whatever). She told me no, because the Canasa treats hemorrhoids too so I won't need anything else. Is this true? I looked online and in this forum archives and can't find any reference to Canasa being a treatment for hemorrhoids.

Quincy: Yes, I copy and pasted my pathology report here on the Crohn's forum: https://www.healingwell.com/community/default.aspx?f=17&m=3819828&p=2

I was checked for H. Pylori like 10 years ago because I was struggling with GERD at the time (that doesn't give me much trouble these days, thank goodness). According to my colonoscopies, I have both internal and external hemmies. That said, I've never seen or felt any external hemmies (I even got a mirror and looked because I was shocked to find out I had them!) so those must be pretty insignificant. As far as I know, I've never had external hem symptoms. So it is my internal ones I am having trouble with.

My doctor told me that doing the Canasa is exactly the same as doing the Rowasa - which I know is not true because obviously the Rowasa covers a different surface area - and I'm only to do 1 suppository a night. I'd like to do something like Anusol or Prep H in the morning but I've just been doing Vitamin E Suppositories - which are soothing. I figure those are okay since they don't contain any medicine. I use one about an hour after a painful BM and that seems to work well. I just thought she'd want to put me on something medicated. I'm glad to hear the Canasa may help. I've only been doing the Canasa for 2 nights so too soon to tell. I do also have Calmoseptine and that stuff is a miracle. Thank you Amazon reviews!

I used Desitin (zinc-based) when I was having bloody diarrhea 40 times a day. I like it for that type of skin irritation but doesn't help with hemmies.

I need to start doing sitz baths. Not practical during the week but I can certainly do them on the weekends. Always seems like such a fuss but I do like baths. Should I put anything in the water for sitz baths (Epsom, etc)? I usually just do water.

One other question to throw out there. My most recent CBC came back showing some smudge cells. My gastro didn't mention it but my PCP said it is likely just from all the inflammation I've had and that we'll watch it. Is this something that shows up commonly with IBD?

Post Edited (noodlesnoodles) : 4/29/2017 9:36:40 AM (GMT-6)

It's not a common occurrence, and can happen with infection that causes fragile cells to break when preparing the blood for examination. It can, however, be a sign of leukemia. My suggestion is to do tons of research and have further testing. If you did have an infection and recovery, the next tests shouldn't show smudged cells.

q

Thank q. Was just wondering if it was one of those "sometimes it happens with IBD" things. Sounds like it isn't really but my PCP is going to keep an eye on it so we'll see. There weren't a ton of smudge cells so I'm not too worried at this point.

I have copies of pretty much everything at this point, yes. My c-scope pathology report from 2015 shows "normal mucosa" for all biopsies taken, including the biopsy of the "erythematous mucosa" in my rectum that was attributed to bowel prep injury.

No, I am on Apriso now (4xdaily). My insurance would not cover it but I was able to bypass insurance completely because the Apriso manufacturer has a discount program for people whose insurance won't cover it. I got the first month Rx free and it will be $10/mo. after that (good deal!). It seems to have worked well in terms of firming up my stools (pred didn't seem to be doing much in that department). They are still peanut butter type consistency and skinny (which I think it partly rectal inflammation but also party low-fiber diet), but they look like snakes and I feel like that is good. The Apriso also seems to have helped the cramping during BMs.

My problem now is that whenever I go below 40mg pred, pain returns to the right of my belly button (identical pain I was having before diagnosis/at the time of my pill cam). After 1 day on 20mg the pain was too much so the doctor but me up to 30mg. The pain is present but completely tolerable at 30 mg. I've been on 30mg for 10 days or so and am supposed to taper down to 20 mg starting today. The doctor does not seem to be concerned that I have mild pain at 30mg (she wanted to take me back down to 20mg only 3 days after she put me on 30mg but I protested and she said I could do another week at 30mg). So today I go down to 20 mg :-/

If the pain is unbearable at 20mg, I'm thinking about asking if we can try to transition from pred to entocort or Uceris. She seems like she is dead-set on getting me off the prednisone and that's great, but I need something to control the pain to the right of my belly button, and Apriso doesn't seem to do anything for that.

Regarding the pred: the doctor tried to go from 40mg to 20mg (which seemed drastic to me, especially since a few weeks before she had told me that it was bad to taper faster than 5-10mg a week), that lasted for 1 day, then I was back up to 30mg. Have done 30mg for 10 days or so and now I'm to do 20mg until my next appt, which is on May 17.

When I told my doctor about the pain coming back when I tapered the pred, she told me that if I couldn't get off the pred with the Apriso, the only next options were Imuran or biologics, and was rather threatening about it. She even wrote down Imuran and Remicade on a piece of paper and handed it to me and said "Look these drugs up online and read about how dangerous they are. You don't want to go on them." It kind of made me feel like she was saying "Don't tell me you are in pain, otherwise I'll have to put you on these other meds." But what am I supposed to do - lie? I mean, it's not my fault if the Apriso doesn't put me in remission...

I've only been doing one Canasa a day since my doctor only told me to do one but I do feel like there are days I could benefit from two. It seems lots of people on this forum do two while on oral mesalamine, yeah? If my hemmies aren't cranky I might swap in a Rowasa enema this weekend, simply because I have a couple left in an open foil package and don't want them to go to waste.

Beave - I know. There is only one Gastro clinic where I live so switching offices isn't an option. (They even told me once if I went to a clinic in another town that they would not see me anymore - I can't burn that bridge with the only GI practice within an hour drive). I'm fairly sure switching docs within the clinic is allowed and there are two other docs there I'd be interested in seeing (the doc that read my capsule endoscopy video and another doc that came recommended from a friend - a doc that went to Harvard and has a special interest in IBD), but I know things will go smoother if it looks like I least gave this doc a chance (I've only seen her in the office once). So, I'm trying to stick it out for a little while with her.

Quincy - I'm doubling up on the Canasa today I've gleaned from reading over the forum that the rectal inflammation is often the part that takes the longest to kick when getting out of a flare - does that sound accurate? It is definitely improving, albeit quite slowly...

Yes, I have some Rowasa enemas.

Sorry you're stuck with a bad doctor, noodles. It's a trigger issue for me because I started off with a couple of really bad doctors and in some ways I'm still paying the price 15 years later.

At least you'll get good advice here and you know to be skeptical of your doctor's advice.