Family doc and GI down, Gyno to go tomorrow.

I’m not anticipating any more follow up at the gyno, so I figured I’d post about updates now.

My GI appointment was actually pretty interesting. I mentioned the weird issues I’ve been having with perianal symptoms (itching, discomfort, pain while pooping, some really minor bleeding, and being awoken at night due to itching), and she did an exam to check for fistulae. She didn’t see anything, but did say that they can be pinhole-sized, so she ordered an MRI to check and make sure there’s nothing there.

Due to my increased frequency, the fatigue, and general malaise I’ve been experiencing lately, I’m also getting scoped at the beginning of August. She palpated my belly, and asked a few times if it hurt on my lower right (not more than usual), so she may be feeling something there that I’ve just not noticed, or have gotten used to. I mentioned that we will be trying to get pregnant within the next few months, so she said that any investigation should be done now. We can make sure everything looks good to give me peace of mind before trying, and if there are issues, we’ll deal with them. Increasing Humira, or switching to Entyvio or Stelara were mentioned.

I’ve done a round of normal bloods, but she also ordered the antibody test for Humira - Anti Adalimumab. Apparently a nurse will come to my home to do this. Hopefully, I can get it arranged for this week, before I inject on Sunday. Otherwise, I think I’ll have to wait until a few days before the injection following this next one.

Just waiting on results and test dates now. Anxious to see how everything looks.

Hey Crohnies, if anyone out there has tried and failed Humira, could you let me know what failure was like for you?

I’m starting to suspect that it is losing effectiveness.

Lately my frequency has increased from 1-2 times a day to an average of 3-4. Slightly increased pain, and massive fatigue. I’m sleeping a minimum of 8 hours a night, but I’m dragging myself out of bed, falling asleep at work, and needing naps. Feeling some general malaise.

I’ve had two instances of a random hive popping up on my stomach (I’ve never had hives before, anywhere), for seemingly no reason.

I’m also losing hair again

I have a GI appointment in June, and I’m 99% sure I’ll need a scope to investigate. It’s also been over a year since my last one, so I don’t think I’m escaping this time. I’m going to mention all of this to her, and see what happens, but I would appreciate opinions!

I have been having odd things going on in my mouth lately… cue joke.

I don’t know if these are possible oral Crohn’s symptoms, Humira, the abscess returning, or something else.

I’ve been getting this really odd feeling (mostly at night) that my upper gums are almost scaly in patches. To touch, they’re not dry, but when I run my tongue over the spots, the texture is different. Nothing visible really either, except once I rubbed them, and skin appeared to slough off. Not painful.

I’ve also noticed that my gums are bleeding at lot when I brush. I haven’t changed toothpaste recently, and I’m pretty diligent about brushing my gums, so this is unusual.

In addition to the above, I keep getting mini sores, right beside teeth. These do hurt, and are especially painful when I brush over them. They will bleed at that point, but usually resolve within a few days. They almost look like there’s a tiny chunk of gum missing.

Last night when looking at my gums, I noticed a few petechiae, and I either have another gum sore developing near where my abscess was, or the infection is starting again and trying to form another fistula to drain.

I’m unsure whether to call my dentist, endodontist, or GI to figure this out.

Any advice or experience from anyone would be so appreciated!

I finally had the wide excision on Tuesday. It was actually supposed to be Monday, but the first surgeon I saw wasn’t comfortable doing anything due to the location on my toe, and my medical history. He referred me to his colleague, who is “the melanoma guy.”

This actually worked out really well, as my mom (who came down to be with me for my appointment) used to work quite closely with this surgeon (she’s a nurse). She was very happy that he’d be doing the procedure and was confident in his skills and expertise. Due to the connection, the nurses definitely pulled some strings to make sure I could get in to see him asap. They were all really great in taking my concerns about having already been off of Humira for a month seriously, and understood why we needed to get the excision done right away so I can restart my therapy.

The surgeon’s office got me in to see him the next morning, and he asked me what I’d prefer for procedure. I went in being pretty against the idea of a skin graft if it was going to be needed, given my history of infections and shit just going wrong. He weighed an excision vs an amputation, but told me he thought amputation right off the bat would be a little aggressive. He was confident he’d be able to close the wound without grafting, but told me it would be extremely tight, and the margins would be very close. I agreed to do the excision as recommended, but if my margins aren’t good enough when pathology comes back, he’ll amputate the whole toe.

The excision itself was fine. The doctor made a remark about Crohn’s patients not always having a great pain tolerance (?), and was then impressed when I didn’t flinch for the injection in the bottom of my foot. He loaded me up with short- and long-acting freezing too, which was great.

The excision went down to the bone, and he also said that he hit part of my nail growth plate, so I might have some issues with that toenail going forward, no biggie. He put three huge retention sutures in, and two smaller ones. I go back in three weeks to get them out.

In the meantime, he asked for the pathology to be rushed for me. It usually takes about three weeks, which would mean missing at least two more doses of Humira. We’ll see if the request will actually result knowing what’s happening faster.

For now, we know that it’s definitely Stage I, and likely a Stage Ib. The thickness was only 0.43mm, but the mitotic rate of 1 was more of a concern. The surgeon should know definitively when I go back to see him for future removal. If he gets the pathology before that, and I do need the amputation, I assume that would happen before. There wouldn’t be much point in taking them out if the toe is just coming off.

He prescribed me Percocet for pain, and said it would be pretty sore once the local wore off. He was right. The pain level resulted in me taking two Percocet every 5 hours, until the vomiting started. I took the last two at 4:30am when the pain woke me up, and then I pretty much barfed from 7:30, when I got up, until 4:30pm. I actually tried to go to work, and ended up under my desk, puking into my wastepaper basket. I went home and barfed some more, called the doctor, who switched me to tramadol, and went to sleep. So, no more Percocet for me. Ever.

All in all, I don’t feel too bad about it, but I need to book with the dermatologist to make sure nothing else looks suspicious before we can think about going back to trying to conceive.

The surgeon did reassure me, though, by saying that I can absolutely get pregnant as soon as it looks like we have everything under control. There’s no need to wait for a certain number of months/years to watch for recurrences.

So far not having any bleeding, but definitely seeing the results of the stress on my gut. Fingers crossed I make it long enough to get back on Humira without losing my remission.

This whole skin cancer thing is super crap.

My excision is scheduled for September 11.

I spoke with my GI last week about what’s going to happen next. For right now, she has stopped Humira until we see what the surgeon has to say. She also has the pathology report, but I haven’t asked for, or gotten any details about the type of melanoma, or the possible staging.

Apparently any kind of aggressive cancer regardless of stage is not a good combo with the immune suppression of Humira (of course), hence the stoppage. If I have breakthrough symptoms, she mentioned prednisone (). Depending on what the surgeon says, and whether I have any other spots on my body that are suspicious, we may switch to Entyvio to be safer given it’s gut-targeting, rather than whole-body effects.

Given all of the side effects and complications I’ve experienced thus far, I can’t say I’m a huge fan of Humira. But, it’s gotten me into remission, and my symptoms are well under control. I’ve never been hospitalized due to my disease, and have not needed surgery. I’m so lucky that this drug worked for me.

As it stands, I’ll miss three full doses of Humira before the excision, and possibly more afterwards. I did ask about getting an earlier appointment to reduce the time off the drug (and the horrible waiting in limbo), and they offered me one this coming Wednesday. Maybe this is stupid, but with Wednesday being the day before my in-laws arrive from overseas, and the start our long-awaited holidays, I opted to wait until the originally-scheduled time. We’re going to be busy doing all kinds of activities: hiking, walking, touring around, and lots of driving.

I don’t know what this excision will involve (skin graft/amputation is possible), or how mobile I will be given the position on my toe. Just the biopsy was quite a lot more painful than I was expecting. I don’t want to ruin my holidays and everyone else’s as well, especially when the surgeon didn’t seem to think it needed to be done on an absolutely urgent basis.

To make this decision look less ridiculous, I’ll just say that I did ask my GI to let me know if she thought I should take the earlier appointment. She has the path report, and would hopefully know what we’re dealing with. She didn’t return my call, but her secretary confirmed she was aware of the question, so that makes me feel better. If she had told me to get in ASAP, I would have done that without hesitation.

Now I just have to wait and keep an eye on Crohn’s symptoms. I’ve had some increased frequency which I’m sure is due to stress, but nothing to be too concerned about yet. My GI told me that my scope showed deep remission, so I’m just hoping that I can hold on to that without Humira, and that I won’t have developed resistance to it when I get back on.

Anyone with a similar experience, please don’t hesitate to send me a message. Whether you have Crohn’s and melanoma, or just melanoma, or for that matter, have ever had a surgical excision on a toe, a tiny bit of insight into what I can expect would really help with my anxiety over this.

The biopsy of my toe came back. I found out yesterday.

I have melanoma.

The appointment with the plastic surgeon is booked for early September, but I’ve asked whether that can be moved up. My GI told me to stop Humira until we get this dealt with, and waiting for the date they booked me means I’ll miss three doses at a minimum.

We’re now discussing further checks of my whole body, possibly switching to entyvio, and that if they find more melanoma, what we will do if I flare (surprise, it’s pred).

I refilled my birth control today. I was so excited that we were finally ready to start trying. I thought I was finally healthy enough, and we were in the clear to have a long-awaited baby. I started taking prenatal vitamins last week for God’s sake.

My friend is pregnant, and is announcing it to our friends group tonight. She gets to have a baby, and I got skin cancer instead.

Feeling pretty low, and I’m aware this is a pity party. I stay pretty positive, but this is too much for me right now.

07/07/2018

A year ago today I fainted. I fainted because I hadn’t been taking my iron the way I was supposed to. I hadn’t been taking my iron because no Dr. had ever explained anemia in a way that made it sound important or harmful. So I didn’t think iron was as necessary as it is. My boyfriend got to witness me collapsing onto hot pavement as he drove the car up that I had sent him to fetch so I could get out of the heat. Instead of walking to the car I was half dragged my strangers who thought I had heat stroke. I didn’t wake up until after I had been splashed with water and placed in the car with AC blasting on me. The longest it’s ever taken. If it wasn’t for these strangers I could have ended up in the hospital for severe burns/road rash. After seeking treatment I started researching Anemia on my own & I learned a lot I had never been told before, I scared myself with what I learned. Now a year later, for the first time since I was diagnosed at about 14 years old I can say I’ve taken my iron everyday for the last year. Sometimes we are responsible for finding our own reason for treatment & sticking to it.

6/26

Just got the results of my vectra back. My disease activity went down by one point but I am still moderate. I really wish this all happened a year ago, now my Dr. is moving across the country & I have to decide to alter my medication with a new Dr. who didnt experience my hardships. Part of me is worried my body is rejecting humira like I rejected enbrel years ago.

Physical therapy

Been doing PT for over a month now and I’m really starting to notice a change. My posture is improving a ton and my knees bother me less, I’m lucky to have a therapist who has studied RA so she knows how far to push me.

Have you guys ever considered or done PT to help with your RA or issues caused by it?

Last post

Hey guys!

My new phone arrived today, unfortunately I was unable to gain access to the email I set this account with & as I don’t know the password I will no longer be able to post here.

I hope you will continue following my journey on my new blog:

Diariesofanexballerina2

Thank you for always being a listening kind ear when I needed it❤️

I can’t recall when I jumped last or where, I don’t know when or i will ever be able to again.

I wish I had dated this when I wrote it as a draft. I jumped again on March 16, 2016.

New account

Hey guys,

I created my personal tumblr over 10 years ago, unfortunately I don’t remember my password. The email I made my account with has since been closed due to hacking.

I’ve been posting via my phone which needs replacing, soon. I’m afraid I won’t be able to log in once I get a new phone due to the fact that I don’t know my password & can’t reset it.

I am going to be making a new blog in the next few days & I’ll share the name here. I will continue to post here until I get a new phone, but this way once that happens, you’ll all know where to find me☺️

P.S. - I started this blog 7 years ago as a newly diagnosed young adult with RA. I was scared and I needed to vent to people who didn’t know me personally, I never expected this blog to grow past 10 followers, let alone to be asked for questions about my life. I know I’m not a hugely popular blog but just know I’ve noticed everyone who follows me & im greatful for you.

UPDATE: my new account is: Diariesofanexballerina2

Thanks for joining me on my journey!

-Allie

nottonyharrison:

Please don’t order groceries online if you’re physically and mentally able to go to the supermarket yourself.

This is not a time to take the convenient option. People who aren’t able to do their own shopping literally can’t get delivery slots and are having to put themselves at risk to get food, or face the reality of going hungry.

Being kind isn’t just about your tangible interactions, it’s also about thinking beyond your own bubble.

This is so me right now. I spent over an hour getting set up with a grocery store. An hour later my order was complete then I found out they had no windows for the next week. I decided to check again later & but got kicked out of the site. My password was wrong and now I am locked out for 2 hours.

I made a Twitter account, would anyone on here be interested in following me?

attainablerecovery: