Should I be worried?

Oh, Plucky! That super sucks. I am sorry for what you are going through and it's funny how we don't know each other at all on these forums yet we feel so much empathy for one another. I am sending all the good thoughts I can your way. We are close in age but I'm married with no kids, and I feel horrible guilt all the time at being a crap wife who hasn't been able to get out of the house properly in the mornings because for so long I've been chained to the bathroom. I literally cannot even imagine trying to deal with this with little ones, and I have so much admiration for you for keeping it together as much as you can.

It's slowly getting better (though crap again this week because I'm getting my period), but I'm yet to hit remission and I am relieved yet feeling guilty that my husband is so kind and understanding, giving hugs when I am frustrated to tears at seeing blood in the toilet once again. I sympathize so much with those feelings.

I hope the GI situation gets sorted fast and that you start responding quickly to your meds. I will keep fingers crossed for you. Keep us updated!

Fletch10 said...
Oh, Plucky! That super sucks. I am sorry for what you are going through and it's funny how we don't know each other at all on these forums yet we feel so much empathy for one another. I am sending all the good thoughts I can your way. We are close in age but I'm married with no kids, and I feel horrible guilt all the time at being a crap wife who hasn't been able to get out of the house properly in the mornings because for so long I've been chained to the bathroom. I literally cannot even imagine trying to deal with this with little ones, and I have so much admiration for you for keeping it together as much as you can.

It's slowly getting better (though crap again this week because I'm getting my period), but I'm yet to hit remission and I am relieved yet feeling guilty that my husband is so kind and understanding, giving hugs when I am frustrated to tears at seeing blood in the toilet once again. I sympathize so much with those feelings.

I hope the GI situation gets sorted fast and that you start responding quickly to your meds. I will keep fingers crossed for you. Keep us updated!

Fletch,
It sounds like you are responding well to your treatment--that's good news!

We had "date night" but it was lame--me on one couch, husband on the other, watching the latest Star Wars movie. We were supposed to be trying for another baby, but that is on hold indefinitely pending the outcome of this health crisis. So frustrating. Thank you for your warm thoughts--I'll pray for your swift healing and lasting remission.

iPoop said...
Sounds like you're going through hell both with the flare and the nurse at your doctor's office. Flares are enough without the extra stress of that.

Have you reopened communication perhaps with a different nurse at the new GI office? It's important that you have a channel of communication open and someone to contact who listens and addresses your concerns.

Oh no, I have officially "fired" the new GI's office. He has one nurse, it's not like I can pick and choose which nurse I deal with, unfortunately.

I am continuing care with current GI whose office is 1.5hr drive. I started off on the wrong foot with his nurse but we have ironed things out and now communicate very effectively through the patient portal. I trust current GI nurse and her very competent MA. So I have what I need.

Feels like time for an update...

I saw my fistula tonight for the first time. It is simply a hole above my anus that is about the size of an ear piercing. So very strange.

I had a better week last week. I felt more stable and was able to be more active (like taking my kid to the park and cooking dinner, not like going back to the gym or running errands all day...God I miss coffee...).

I took my 3rd dose of Humira at 11pm Friday night (so a tiny bit early because technically supposed to take it Saturday). I was up and down all night.

The next day, I'm EXHAUSTED to the core of my being, which happened before when I took Humira, but perhaps not this bad. And my husband was called into work so I had the toddler by myself all day. Was also toileting quite a bit and uncomfortable--very crappy day. BM's more formed though, so better.

Sunday felt a bit better, not so tired, and didn't go to the toilet much (like 4x). L

But today...whoa. Woke up with terrible cramps in the colon and couldn't leave the toilet until all was purged. Very uncomfortable. Discover I have a rash/rawness around my anus/perinium. Decide to forgo depends adult diapers and just weàr loose cotton pants. Rash gets more irritated, so clearly "airing out" didn't help. Come to find, I have been leaking what I believe to be puss from my fistula abcess, and it is gnarly and that's what is irritating my anal area. Keeping it very clean and using either my kid's diaper cream or hydrocortisone cream, which is helping. Ick.

Ivm trying to find out if labcorp reported my test results from all the poop samples I turned in last week, but it won't let me log in from my phone. I know my fecal calprotectin test was reported to the new GI (the one I ditched b/c his nurse sucks) because his nurse kept calling me. From the amount of mucus in my sammple, I bet $1 million she would tell me I have a lot of inflammation. Not news to me. So I also want those results from labcorp b/c I refuse to talk to that nurse.

I see current GI on Thursday and I am about to burst with questions and suggestions. I want answers. I want a treatment plan beyond "see if the Humira works". I want to talk about this fistula...do I need an MRI? A colorectal surgeon? I hope he dazzles me with his brilliance. I'll let you know how it goes.

Update on today's appointment with my GI and subsequent treatment plan:

1. First thing he did was walk in the room and announce that my colon is screwed and either we fix it straight away or I'll be having a colectomy soon. (Bruh, I was already researching surgeons so this is not news to me--I can't live in purgatory much longer).

2. He tells me my cal protectin test was insanely high. (I expected this because I scooped mostly mucus into the test tube and also my last cal protectin in 2013--a less serious flare--was also "off the charts").

3. I say "Ok, what do you want to do? Immunomodulators? Increase my Humira?" And he says definitely 6MP or Imuran, my choice. I chose 6MP, and pending a blood test I will begin 6MP.

4. He also agrees to increase my Humira to weekly, pending a blood test. And he gave me a "booster shot" (Humira injection pen) to take this Saturday.

5. He lectured me about Prednisone. F*ing eyeroll because very few people hate Prednisone more than I do and even fewer people know more about it--how it works and why it sucks--than me. I HAD NO CHOICE. I don't regret taking 60mg and I'd do it again--that only took the edge off (from 20+ toilet sessions with gushing blood to 10+ toilet sessions with drizzling blood and incontinence). I've only been on it 8 weeks (including 3 weeks at 60mg) and I'm already down to 35mg. *** do you expect? I wasn't even approved for Humira yet and then it took a month to work. YES I want off the Prednisone, but carefully, 5mg at a time. He backed off.

6. I"ve never had a bone density scan, so he ordered one. I am built like a brick craphouse and I'm lucky to have strong bones, so not expecting anything to come of this. Curious to know the results though.

7. I showed him my fistula and thrombosed hemorrhoids, but made it clear I was not cool with a digital rectal exam. No sir. So he looked and poked a bit on the outside. Said I have a fissure too. Ordered an MRI. Called in scripts for cipro + flagyl. And *. proceeded to tell me he thinks I have Crohns based on the fistuls, because he never sees fistulas like that in UC patients*. I said "No I don't! My colonoscopies, all 4 of them, have never shown anything but Proctitis". But he said "Well I think you do, we'll see". Uh, NO, I do not have Crohns. I believe I'll be getting scoped soon, although he didn't schedule it yet, wants the MRI first.

8. I am really hoping to heal my fistula without a seton, but he thinks that I will need to see a colorectal surgeon and have one placed, pending the MRI.

9. He also prescribed Uceris foam. I haven't ever tried it, but I'm game for pretty much anything. He gave me a discount card, so that's cool.

10. I have been good the last 2 days. Today I only had 3 BM's and very little leakage. i felt almost "normal" today.

I have high hopes that I am on my way to temission and that I can heal my fistula.

Ok, so I forgot to mention that GI gave me an rx for cipro/flagyl and I just finished 7 days worth. The antibiotics immediately made me feel better. Also, my fistula is definitely healing and I haven't noticed it as much this week. I hope 7 days of antibiotics is enough.

I took my Humira "booster shot" last weekend and after that I really felt better (well, the first 24 hours after the injection suck but then I feel better).

I dropped my Prednisone from 35mg to 30mg on Monday, and I have been feeling good.

I started Uceris foam 3 days ago and I think it helps too. It looks complicated because you have to clip disposable applicators to the foam cannister, but it' really easy and way more comfortable (to me) than using rowasa enemas.

I have enough energy to do things! My house is clean and my to-do list is checked off and I'm making all those recipes I found on pinterest and keeping up with my toddler. Whereas before (when sick) I couldn't stay awake, now I am having trouble sleeping. I need to pace myself though--I'm excited to have energy but must remember I'm still healing. Moderation is hard for me.

I had my MRI and bone density scan today. I was told to fast but was not made aware that I would have to drink a bunch of icky, slimy liquid at timed intervals. Forget the brand name but it was clear, slimy, and tasted like squirt soda. Still better than barium, which I have had to drink twice.

I had to pee while in the MRI and held it until there was just 3 minutes left... then pee'd myself a bit before the girl could get me out of the machine. Luckily, I was wearing depends so no harm, no foul. I'm becoming a fan of disposable underwear--don't knock it 'til you tried it.

I'll take my 5th Humira injection tomorrow, but later than usual because it's my toddler's 2nd birthday and I don't want to feel like crap. Hoping the exhaustion and discomfort it causes lessens as I heal, because I don't want to plan my weekends around my Humira shots.

Will update with results of the MRI and bone scan next week.

Update:

My GI messaged me via the patient portal "Good news! Your bone density scan was normal!"

I'm not surprised because I am a former competetive athlete and I've been lifting weights and taking supplements (calcium, glutamine, etc.) for most of my adult life. I've taken high dose prednisone for at least 1.5 years cumulatively.

So, yay. But what about the MRI? Does it look like Crohn's and what is to be done about my perianal fistula? I have a bad feeling he's going to tell me things I don't want to hear.

I took my 5th Humira shot last night and so far I feel less crappy (exhausted and irritable) than usual so that's good. Maybe taking it every week is the best thing for me. Waiting on lab results to see if GI agrees to continue weekly.

Dropping prednisone to 25mg tomorrow. Took lots of pics because it was my toddler's birthday yesterday and my face is SO fat! I barely recognize myself, even from a good angle. Not cool prednisone, not cool.

Guys! First, thanks Fletch and ipoop for all the support, and everyone who took the time to comment. I have GOOD news!

Got a message from my GI and MRI shows Ulcerative Colitis with mild inflammation!!!

BAM! It's not Crohn's--I called it and I was right. It feels good to know that my instincts and experience are still leading me in the right direction. I had begun to doubt myself and everything I knew to be true about my disease (because everyone's disease is different--you know, like snowflakes) during this flare, and it made me panic.

GI said we'll talk about it later. I will try not to say "I told you so". ;)

Dropped pred to 25mg today too. Who says Mondays have to suck?!

Jane974 said...

Plucky said...
Guys! First, thanks Fletch and ipoop for all the support, and everyone who took the time to comment. I have GOOD news!

Got a message from my GI and MRI shows Ulcerative Colitis with mild inflammation!!!

BAM! It's not Crohn's--I called it and I was right. It feels good to know that my instincts and experience are still leading me in the right direction. I had begun to doubt myself and everything I knew to be true about my disease (because everyone's disease is different--you know, like snowflakes) during this flare, and it made me panic.

GI said we'll talk about it later. I will try not to say "I told you so". ;)

Dropped pred to 25mg today too. Who says Mondays have to suck?!

Awesome that you got some good news after going through such hell!

I didn't know myself that MRI can detect mild inflammation---good to know.

Hey Jane! Thanks! I was not aware that an MRI could detect inflammation, but I have to assume that this was what was accomplished by making me fast and drink 1400ml of this icky drink called (I believe) volumen. I had a previous MRI with just the dye and that was what I expected. Drinking thst stuff was not fun. But well worth it for the good news!

Plucky said...
GI said we'll talk about it later. I will try not to say "I told you so". ;)

You really should say I told you so. My last doc office appointment, i told the check-in nurse that i really wanted to be off of prednisone and he said okay i'll tell the doctor for you. I though he was joking but while i was waiting for my doctor (room next to the doc's office), i heard the nurse tell him: Oh and get John off of pred. I badgered my doc a little "glad my nurse friend convinced you" during my visit.

Ok here is an update that includes "UC Bloopers"

1. I forgot that the pharmacy ships 2 humira pens at a time (one month supply). And I really wound myself up over nothing because the pharmacy was more than happy to overnight my pens this week (early) and I received them Friday. So no need for any covert missions to the city with my toddler. #dramaqueen

2. Did I mention the time (last week) that I was in the MRI machine and I had to pee SO BAD? I had to drink three 450 ml bottles of volumen beforehand and I should have relieved myself prior to the MRI. But I was freezing cold and in a hospital gown and just wanted to lay down under a warm blanket. So I didn't go pee. I had previously had an MRI in an ER last year after my 4th colonoscopy because I spiked a 104.2 fever and they had to check for bowel perforations. They just used the dye and it was over quick--that's what I expected this time. But no. This time they pumped me with volumen and the machine vibrated constantly, shaking my full bladder and making me uncomfortable. I was under the impression that I could not stop the MRI to go to the bathroom, but I wasn't sure I could hold it. So I signaled one of the ladies doing the MRI and asked how much time was left? I about died when she said 20 minutes! I said I would *try* to hold it but just in case I couldn't I was wearing depends adult diapers.The ladies sounded confused but said if I felt I couldn't hold it to let them know--said nothing of letting me go to the restroom. I was trying with every fiber of my being NOT to pee, but with 3 minutes left I started to pee my pants and signaled the ladies that I had failed to hold it. And boy was I surprised when one of them ran to let me out of the machine so I could use the restroom! I had already pee'd a fair amount in my diaper and was afraid it may have wet through my pants. The lady said they had a pair of scrubs if I needed them. So I went to the restroom and was relieved that the depends diapers had not leaked! And SO relieved to empty my bladder. So the moral of this story is *don't be like me*. Use the restroom immediately prior to your MRI and know that you can stop the MRI to use the restroom and then resume it--you don't have to pee your pants! But side note: adult diapers are very convenient and never hesitate to wear them during a flare.

3. Did I tell you about the time that I failed to do simple math and made myself look like an idiot to my GI nurse (2 weeks ago)? My GI had prescribed Cipro and Flagyl for my fistula--in the office he had said 10 days. But I filled the scripts and the Cipro said 2x per day for 7 days, while the Flagyl just said "take every 8 hours". So I counted the pills in each bottle--14 pills in the Cipro, which was what I expected. But only *21* pills in the Flagyl--and by *my* calculation, there should be 28 pills because 24÷8=*4* and 7x4=28... So I messaged my nurse all indignant that the script was only for 7 days not 10 *and* the number of Flagyl pills didn't add up. But if you can do simple math, then you already know that 24÷8=*3* and 3x7=21, so the amount of pills was correct. I'd like to blame this on my UC because between the disease and my meds I legit have "brain fog". But I'm pretty sure this was just me.

4. What about the time (3 weeks ago) when I was alone in the exam room with my GI and he told me to get on the table for the (rectal) exam and I started to hike my dress up and pull down my depends like *no big deal* and he frantically stopped me and told me I had to wait for a nurse to be present before I could take my bottoms off. I think I scared him a little, certainly he was surprised! Oops.

4. How bout the time I started taking Uceris foam enemas (last week) and thought to myself how easy they are--I didn't feel a thing when I administered them! I've been feeling better and singing their praises! And then yesterday I finally questioned if any foam was actually coming out and... it wasn't. I have actually been sticking things up my butt all week for no reason, because the foam never released. WHY didn't it work? Well, because I didn't shake the can vigorously for 10-15 seconds *like the instructions said*. I mean, it's not rocket science.

In other news, I took my 6th shot of Humira tonight. I was hesitant because my toddler has been sick and her pediatrician suggested adenovirus. I told my GI nurse and she messaged to watch for symptoms and if I were to have adenovirus then I'd need to see an infectious disease specialist. I cringed at that. And I did feel like crap yesterday but no fever and feel fine today. So went ahead with the humira.

I have finally stopped wearing depends adult diapers! My fistula only leaks a tiny bit and it's just yellow/green sort of mucus (so no stool). I'm down to 3 BM's per day, still mostly unformed and still with a fair amount of blood--but I feel good so I consider this a "win". I try not to compare but when I see people on here freaking out about a little blood on the toilet paper it kind of makes me feel discouraged, because I still have a fair amount of blood in my stool. I'm just glad it's old blood (dark red) and that my cramps are gone (yay!) and that my frequency is down to 3x per day and that I can *hold it* and not crap my pants.

Ta ta for now!

Post Edited (Plucky) : 3/25/2017 9:42:27 PM (GMT-6)

So happy for you, Plucky! I would take every victory and celebrate, each one is a step closer to full remission! Thanks for making us smile and reminding us that we all go through awful indignities with this disease and it's all okay in the end. I had to give a stool sample at the hospital last week in a not very clean bathroom stall with no hook for my purse (which had to go on the floor - EW) and never having given a sample before. Trying to puzzle out how to hold the dang receptacle while not getting anything on myself and then having to scrape minute bits of tenesmus related diarrhea (there was almost nothing) into two receptacles while squatting on a dirty bathroom floor was not one of my better moments but I laughed through it and managed to give enough for FCP and CDiff tests so all okay in the end. We are all a bit of a mess but at least we know we are not alone! Wishing you the best this week. I am waiting to be scheduled to start remicade and praying it's this week so I can get my first two loading doses done in time to travel to a board meeting for work the week of the 16th - it's critical for my job to be there, so really need to get my first dose done this week!

Good luck and keep us posted!