Should I be worried?

iPoop said...
Great you have such a nurse in STL! It certainly makes sense to get a second opinion and a surgery consultation. Explore all avenues, ask about your surgery concerns. It'll be a good q&a session.

6MP or imuran may help, just plan on give it 3 months and be on pred in the interim. It depends how awful you're currently feeling. Cyclosporine is faster, IV based rescue like pred, not sure if they can start you on it and then transition you to 6mp? Dunno.

Stinks as it seemed you were getting better amd now a turn for the worse. Unfortunately, that's UC in a nutshell...

How long have you been on bumira and at what dose frequency? I'd give it 6 weeks for a response and then try something else. Entyvio is possible but slow working.

Thanks ipoop
I'm feeling ok today, just fatigued with lots of aches and pains (like the flu). I'm afraid it may get worse though.

I started Humira 40mg Feb. 4th--was bi-weekly--and have increased frequency to weekly since March 4th (still 40mg). It has worked! I'm so much better and managed to wean from 60mg down to 25mg without issue. Humira not working isn't the problem--it's that it just isn't enough right now. I would wager that none of my GI's would consent to upping the prednisone, and truthfully I don't want to--it wasn't that effective--it just barely held me until the Humira was approved by my insurance and (mercifully) started working. Cyclosporine though... will look into it.

I just want to go back to bed. But instead I'm taking toddler to the park. Grateful to be well enough to take her to the park. Bummed about the setback. Hopeful that one of these doctors will get me well *soon* via drugs or surgery.

Fletch10 said...
Just a note that thoughts are with you, Plucky! Hoping you get the answers you need. I was thinking a lot about surgery the past couple of days - if the Remicade and another biologic or two does not do the job, I want to be mentally prepared and not too sick to do the surgery well when the time comes. I'm fantasizing about a bag and how nice it would be to literally never have to poop again for the rest of my life....traditionally, that is ;)

I hope you get some resolution, and some healing! Can you by any chance add some Cortifoam? When I had HORRIBLE tenesmus a few weeks ago, that was the only thing that stopped it, and it worked within a few days. Huge difference and way easier to deal with/retain than any of the enemas. I ended up with tenesmus again last weekend (constipated and made the mistake of straining, what a dumb idea that was) - again, Cortifoam to the rescue and the tenesmus was gone within 2 days.

Hey Fletch! How are you? How is the Remicaid treating you?

So I've been using the Uceris foam and it is not helping right now (at least not that I can tell). But of course it is a good suggestion and my STL nurse mentioned it's helped a lot of their patients. I know cortifoam is not the same as Uceris but similar and no way they will give me anything other than Uceris because "steroids are bad, m'kay" *eyeroll*. But Uceris is not systemic so they love it. So do I--when it works.

That stinks that you're feeling terrible. Did you do your humira shot? Hopefully you bounce back quickly. I didn't have luck with Uceris once things got to a certain point. I stayed on it for quite a while, because I didn't want to take pred, and I think it helped a little, but not enough to where I was able to do the things I wanted to do.

Have you had upper GI tests? I had to do an MRE before surgery - some people do pill cam. It's really important that they rule out any chance of Crohn's. Also, doing another stool test is never a bad idea. Have you ever taken any antibiotics to see if you respond? Some people respond well to Flagyl or Cipro, or the combo. I never had them make me worse, but they didn't get me into any miraculous remission unfortunately. How about FMT? Have you considered that? Probiotics? Entyvio?

Surgery decreases fertility, that's definitely something to consider. Most doctors would likely say to have children before surgery, but some people have children after. Definitely a topic to address when you consult.

The positive about surgery; it could be the end to all this UC stuff

notsosicklygirl said...
That stinks that you're feeling terrible. Did you do your humira shot? Hopefully you bounce back quickly. I didn't have luck with Uceris once things got to a certain point. I stayed on it for quite a while, because I didn't want to take pred, and I think it helped a little, but not enough to where I was able to do the things I wanted to do.

Have you had upper GI tests? I had to do an MRE before surgery - some people do pill cam. It's really important that they rule out any chance of Crohn's. Also, doing another stool test is never a bad idea. Have you ever taken any antibiotics to see if you respond? Some people respond well to Flagyl or Cipro, or the combo. I never had them make me worse, but they didn't get me into any miraculous remission unfortunately. How about FMT? Have you considered that? Probiotics? Entyvio?

Surgery decreases fertility, that's definitely something to consider. Most doctors would likely say to have children before surgery, but some people have children after. Definitely a topic to address when you consult.

The positive about surgery; it could be the end to all this UC stuff

Hey lady! Thanks for all these suggestions. I took my Humira this afternoon and it always makes me feel like crap to a greater or lesser degree, but by tomorrow I'd hope for some results.

I've been eating but I'm not really passing any stool, just blood the last couple days. So I guess it's back to a liquid diet tomorrow. And phillips milk 'o magnesia. Good times.

So your suggestion about antibiotics--that sparks me--because I took the flagyl/cipro about a month ago now forv7 days and it helped tremendously. I think some docs will putbyou on a long course of it? Right? How does that work?

Haven't had any upper GI tests but I'm sure they won't do anything until they have all the facts. I do trust my STL GI and nurse. And Barnes Jewish hospital is ranked #11 in the nation in colorectal surgery (according to what I read).

I want another baby very much. But I suffered infertility to have my toddler and I'll be 38 next year--if I end up having surgery now then we wont try to have another child. That makes me sad, but I have one fantastic kid and I already feel like I won the lottery with her. So I'll get over it if that's how it ends.

When this flare first started I thought it was c.diff for sure and I told my husband he would have to give me a FMT--but good grief that grosses me out! Unless it was c.diff I don't think I'd do the FMT. I take VSL#3 probiotics--2 pills per day for almost 2 years--and they help but haven't worked miracles, so I won't spend the money OOP to take 10+ of them per day or whatever dose is suggested. I don't know that I'd bother with entyvio at this point. I'm sick of waiting--not a patient person at all--want my freakin' life back and would rejoice to be off the drugs post-surgery (assuming it all goes smoothly). Plus you make good points about surgery that made me think--I have good insurance now through my husband (I'm a stay at home mom). But what if something happened to him? I could be in a very vulnerable position. You said you wish you had the surgery sooner when you had better insurance and that clicked with me. I'm not gunning to do it now but I am willing to take risks in order to get what I want--my life back.

Update:

I saw current GI today and the visit went better than I expected.

He actually suggested I get a 2nd opinion from an IBD specialist at another hospital in his city. I didn't expect that but that's what I wanted so I was relieved! I took the opportunity to ask if he'd mind if I see my GI in STL, and he was totally cool with that--suggested I ask them to give me a colonoscopy! Which is what I wanted--I was shocked that he suggested it though. We didn't discuss medication options and I regret that because he said there are "options" and I want to know what he thinks. But I was blown away by the rest of the conversation and straight up forgot to ask him about meds (to help me get off the prednisone). I can message him and ask, but something tells me he won't say anything until I see the other docs.

Of course current GI is gravely concerned about me being on prednisone but at least he didn't press me to wean at this time. So I'll hold at 25mg until further notice.

I excitedly emailed STL nurse to share all my news. She booked me with STL GI on May 1st. Nurse said she will try to book me with a colorectal surgeon on the 1st--I really need to see the surgeon so I hope we can work something out. She said she might be able to get one of the other GI's to scope me on May 2nd, but I'll have to pass because I would be under anesthesia and have no one to care for toddler and pick me up that day.

STL nurse actually said they prefer patients to be scoped locally and that's what works best for me. My options are:

1. Have the fancy IBD specialist do it (the one current GI is referring me to--she has a great resume and her hospital is the only one in the state where I would even consider having a colectomy).

2. Have the local colorectal surgeon scope me in addition to lancing my fistula and culturing my fissure on May 10th (one-stop-shop). I trust her and I'll already be under anesthesia.

3. Current GI said he can always do it but he encouraged me to go elsewhere. I think current GI is genuinely concerned for me but I also wonder if he's just sick of dealing with me. Probably both. I did gift him, his nurse, and his MA with starbucks gift cards today--I appreciate what they've done for me (most notably getting me on Humira) and I know I am a PIA.

So is current GI wanting me to establish care with the fancy IBD specialist and wash his hands of me? He was careful to say he's still happy to see me but reading between the lines it seems ridiculous to see him and the IBD specialist, right??

Current GI did a rectal exam (finger only--he was going to scope but respected my request not to). He asked why Im wearing a pad and I reiterated that I have anal leakage and this past week have barely made it the toilet due to urgency. He seemed perplexed but I dunno why because this has been going on for months. He said I don't seem that inflamed and I asked him "But then where is all this blood coming from?" And he seemed to be stumped.

I'm looking forward to getting some answers and treatment options. Hopefully soon because I don't want to stay like I am for months, although, at least it's manageable and I'm able to function pretty normally, just need to rest more.

FlowersGal said...
Wow, what an ordeal! I hope the Humira is working for you! Good to have options. Seems it might be easiest on your system to have the 1-stop shopping by the colorectal surgeon, if she'll do the colonoscopy (I assume they are in her repertoire?), just because only one anesthesia (I have a terrible time with anesthesia and nausea after, so that's what I'd pick, but you may be fine with it). An IBD specialist sounds like a good solution. For a second opinion, if nothing else.

Oh, and great news that the fistula isn't as bad as you feared. Hope it heals quickly after the lancing!!!!

Hey FG!
The Humira is working, just not well enough to get me off the prednisone. Even with increase in symptoms I'm still WAY better than I was before the Humira--I want to stay on it.

Called the colorectal surgeon today and requested they "supersize" my order and add on a colonoscopy. The nurse returned my call and said Surgeon doesn't usually do both procedures (fistulotomy + colonoscopy) at once, but nurse will ask Surgeon and get back to me.

Anesthesia doesn't bother me so I wouldn't mind having to have 2 procedures, but my husband has already taken a lot of time off work to take me to appointments and I want to keep that to a minimum. Plus I have to fast and do fleet enemas for the fistulotomy--might as well tack on a Suprep for the colonoscopy and get all the unpleasantness out of the way.

Also waiting for the IBD specialist office to call and schedule me, but current GI nurse just sent the referral today so I won't expect to hear anything before next week.

So we'll see how it all shakes out!

Happy Easter!

darn! I'm so sorry! This disease just sucks it up big time. I know you're doing all you can. Sending you good thoughts and wishes that tomorrow will be a much better day for you. I know it's hard, and you won't want to put anything in your stomach to make the guts worse, but try to eat something. Chicken broth? Do you have any bone broth?

Sending you warm thoughts as well, Plucky. I have been down and desperate as well during flares so I know how you feel. What you are going through sounds awful. The one thing we know for sure is that the flare will pass and will eventually end...they always do (or you can do surgery as a last resort). .

Update:

I write to you from my hospital bed.

I was feeling poorly (body aches, extreme fatigue, depressed, "pain attacks" in my colon that brought me to my knees etc.) I mulled over going to the ER for a couple days but ultimately refused even though husband pushed me. Finally I spiked a fever of 99.8 on Friday and decided to go because:
1. Fever on Humira + prednisone (protocol is ER)
2. I needed to have a bunch of labs done to check for anemia per my GI in STL and had an appointment at labcorp Saturday, but going to the ER could save me the trip to labcorp.
3. I was pretty sure I am anemic--lightheaded, winded walking from one room to another, bruises all over, muscle aches/burning
4. My husband didnt have to work on the weekend so not screwing with his schedule.
5. It was Friday (ER is the worst on weekends) *but* it was early--dinner time--and I figured it wouldn't be busy...

Well I was wrong and it was kind of busy, but moreover, my rookie *** forgot that the ER goes by priority, so even though I was there first I got bumped whenever someone more urgent came in after me, and traumas started rolling in from ambulances in around 7pm. This is in addition to a lot of old people slumped over in wheelchairs appearing to already be dead. So I was not a priority.

I talked to the triage doc and handed her my lab orders and she kindly agreed to run all the tests except for one--an iron study--but she checked my hemoglobin for anemia.

I got there at 6pm and my husband and kid went and ate dinner and waited in the car until 11pm and I felt bad. So I went up to the admissions desk to ask how to obtain a copy of my lab results and tell them I had to go... But serendipitously my name was called and I was finally taken back to a room.

After I got settled a PA came in and informed me that I am anemic, but not *alarmingly* anemic, as my hemoglobin was 10 and a blood transfusion is not warranted until you are at 7 or below. She asked why I was there and I mentioned the fever, malaise, and anemia. Then she went away and after awhile a young MD and her student visited me. The MD said that while my hemoglobin level alone was not cause for a blood transfusion, the fact that it had fallen 4 points in three months, from 14 down to 10, was alarming when couplex with my symptoms and the fact that I have been bleeding for four months straight. So she surprised me and asked if I wanted to be admitted for a blood transfusion, to which I replied that I would do *anything* at this point to feel even the slightest bit better. She then asked to.do.a digital rectal examination and I obliged-zso that makes 3 rectal exams recently.

I then was sent for a chest x-ray and a lower abdominal x-ray. At some point I also.had an EKG.

But then the PA returned and said *no*, that I was not a candidate for a blood transfusion because my hemoglobin levels werent low enough. By this time I was exhausted and had been given morphine so I was sick of dealing with docs and their conflicting opinions. Plus I needed to send my family home to bed. Finally I just sent them home and decided I would find a way home if they released me. But after awhile the nurse confirmed that I was being admitted--for what, I didnt know. I figured maybe IV iron? But then the hospital Internist MD visited me and vetoed both a blood infusion and IV iron due to my lebels being too high--this pisses me off because he is only looking at the numbers and not my symptoms or the fact I quickly dropped 4 points. He said he wanted to give me IV steroids (solumedrol) and in my exhausted morphine state I blurted out that my GI's will be pissed because they hate steroids and want me off of them no matter how sick I get. I asked if I would have to wean again and he said no, he just needs a reason to admit me. And so I agreed, thinking I would leave Saturday morning. Ha!

But no. Instead I had a visit from the GI group of the local GI that I *fired* after his nurse screwed me over. They kept referring to him as if he were my doctor and it was very uncomfortable telling them that things "didnt work out" with local GI and that I am *not* in his care at all. They said that I should stay the weekend and continue IV steroids, and I said ok, because they are actually working and I've only been toileting a couple times per day.

Unfortunately I can't stay on high dose steroids long term regardless how well they work because they are bad bad bad for your overall health. Hospital GI suggested I stay on 40mg oral prednisone after I leave the hospital and I guess I will until I talk to other GI's and they give me another option. This is all very unexpected and I need a good GI to guide me out of this mess.

To further complicate matters, I finally spoke with Oschner GI and the ONLY appointment they offered was May 1st--the same day I am already scheduled to see Barnes Jewish GI and my beloved nurse in STL. Life is so unfair! There are pros and cons to both:
Pros for STL: They already know me, they are already following my current flare and know the details of the past 4 months, my STL nurse moves heaven and earth to get me what I need. I want to visit my family and friends in the area.

Cons for STL: I have to pack up my toddler and drive 10 hours to get there, by myself as husband has to work. Even if they can fit me in, I cannot have a colonoscopy because I have no one to care for my kid and take me/pick me up. Plus doing the colon prep on a hotel with a toddler? No.

Pros for Oschner: They are closer to where I live (2 hour drive). They might be able to fit me in for a colonoscopy that week after I see them May 1st (which I can prep for in the comfort of my home and husband can take me and keep our toddler). They are trying to set me up to see a colorectal surgeon that day and I seriously think I might do the surgery there (maybe soon?) so that is invaluable. And I'm not entirely sure that I'm fit to make the trip to STL alone with my toddler, so maybe I shouldn't.

Cons of Oschner: While they have reviewed my records, they dont know me and I have no reason to trust them yet. There is no guarantee that they can get me in for a colonoscopy that week and if not the Oschner GI is unavailable until May 22nd (going to the big GI conference I'd assume, same as my Barnes GI). What if I hate them (Oschner GI and her team) and they waste my time? I dont have time to waste.

I am just so tired of having to make these decisions. My brain is fried (starved of oxygen due to anemia, perhaps?) And I'm feeling very vulnerable and insecure.

Help? Anyone? Perspectives? What would you do?

Oh, Plucky! I am so sorry to hear you are in the hospital and feeling so lousy. Hugs and prayers - I would choose the closer hospital and get done what you need to as quickly as possible do you can start enjoying your life again. Closer is at least logistically easier and therefore somewhat less stressful. I am sending you lots of good vibes for healing!

Fletch10 said...
Oh, Plucky! I am so sorry to hear you are in the hospital and feeling so lousy. Hugs and prayers - I would choose the closer hospital and get done what you need to as quickly as possible do you can start enjoying your life again. Closer is at least logistically easier and therefore somewhat less stressful. I am sending you lots of good vibes for healing!

Fletch!
Good to hear from you! I'm feeling super rough right now and it's probly at least partially due to all the stuff they pumped into me in the hospital. I had an IV iron infusion, 60mg of solumedrol (IV steroids), Levonox (blood thinner to prevent clots--probly not a great idea for someone who is already experiencing blood loss), and pain meds. Hoping things will settle down by tomorrow or the next day. But as it is, I am feeling super uncomfortable about going to STL by myself with the toddler. I am starting to lean towards scrapping it.

FlowersGal said...
So sorry you're doing so poorly! Being In the hospital sucks. But then so does being home and miserable and unable to do anything. I think staging cloister to home is a good idea..when I was in the hospital last year I went out of town and it wasn't convenient ast all -- and I was only an hour away. No one but my husband could come to visit and it was hard on him to drive 2 hrs a day. And if I wanted something from home I'd have to wait until the next day.

Hope they get you feeling better soon!!!!

Thank you FG!
Since the consensus is to go to Oschner and I feel ill-prepared to go to STL alone with toddler, I believe I will stay close to home and go to Oschner instead of Barnes. Hate to disappoint my Barnes GI nurse because I just love her and can never repay her for all her help. I know she'll understand though.