A SHITTY morning! (literally!)

Ohhhh man….this morning was awful! When I woke up, I got up to go to the bathroom like I usually do, and I looked down to check my wound dressing, and it was a different color! It was not white gauze! It was dark. I instantly knew what had happened. My ostomy appliance had failed AGAIN and leaked over night. In the almost 5 years I had my ostomy from 2011-2015 I had ONE leak! ONE! And now all of a sudden I’ve had 2 in the last week and one before that! What the hell?!

Now this wasn’t just a tiny leak, the wafer had completely lost its seal. The only reason that I didn’t wake up covered in stool was thanks to my wound dressing. I tend to put way too much tape on it because I don’t want it to come off. Well, since its taped over the edge of my wafer, the gauze and tape actually held all the stool in. the good part of this was that I didn’t have a huge mess in my bed to clean up, and it didn’t get on my clothes, but the bad part was that my wound was essentially marinating in stool for who knows how long. This terrifies me!! I have been through so so much with that stupid wound that I don’t need it to get infected from the bacteria in stool! Luckily, only a very tiny part is still open, the rest has finally scared. But I’m still pretty paranoid that something is gonna happen to make it open back up again, or get infected.

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completely soaked into my dressing

 

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After I took the dressing off…my wound is under all that crap!

I pretty much immediately burst into an ugly cry, sobbing as I gathered my supplies to shower and change my pouch. With the river of tears streaming down my face, I peel off the wafer, and after I got the tape part off my skin, it pretty much just fell off. THATS how bad it was, the wax part of it wasn’t even stuck to me at all. And of course once I got it off, Ralph (my stoma) erupted everywhere! Went all down my leg and onto the floor, thankfully I always put a towel on the floor when I change my pouch, in the event that that happens. But of course this just makes me cry even more.

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It’s blurry, but you can see the entire seal around the cut hole is destroyed

At this point Cody heard me sobbing and cussing and came in the bathroom to comfort me, and turned the shower on for me.

Let me tell you, I used up all the damn hot water! I didn’t want to get out, I didn’t want to deal with Ralph anymore, and I didn’t want to put a new pouch on. I had only just gotten up, and I was already completely defeated and broken.

Thankfully Ralph behaved while I was getting my new pouch on, and I decided to change up how I put the pouch on. Instead of using a putty like ring that goes on my skin, around the stoma before the wafer, I decided not to use that and use the paste instead. The paste can help protect my skin, like the ring does, just a different consistency. It also helps “glue” the wafer to my skin better….at least that’s what its supposed to do…I guess we shall see how it works.

Reflecting on my morning and how upset I was that I hat to deal with leaks and changing my pouch twice this week already, I thought of all my Crohnies, and my girls with guts sisters, how some of them get leaks all the time, almost every day, and sometimes several times a day. All I could think was “how the hell do they do this?! They are so much stronger than I am!”. I suppose if it happens all the time you get used to it and it becomes a new normal…but I sure hope that’s not the case for me!

Fortunately my day got much better when Cody and I got to have lunch with a couple that we haven’t seen in almost a year! We got to catch up for a couple hours, and then on the way home Cody and I stopped for ice cream!

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BIOLOGICS BREAKDOWN!

*disclaimer*- The mechanisms of these two drugs is very complex, I AM NOT AN EXPERT!! But I did do a little research and have summed it up the best I could and made it a little easier to understand.

*Some details may not be entirely accurate….but I tried*

Now with that out of the way, I actually really enjoyed learning the differences in the medication. when I was in my doctors office and he told me we needed to try a different class of medication, I didn’t know what that meant. Both medicines are biologics right?! how are they different classes? So this was fun and informative for me, and I can appreciate the decision my doctor made for me much better now that I learned more in depth details about how these medicines work in my body. I hope this helps someone!!

HUMIRA (adalimumab) STELARA (ustekumab)
Biologic medication Biologic medication
Class: TNF-alpha inhibitor Class: IL 12, and IL 23 inhibitor
Average price- 4,539.00 Average price- 19,468.00
Usually self injected every 2 weeks at home Usually self injected every 8 weeks, after initial IV infusion loading dose
Serious side effects possible, including certain cancers Serious side effects possible, including certain cancers

These two biologics are two different classes of medication, humira is a TNF blocker and Stelara is an IL12 and IL23 blocker. TNF, IL12 and IL23 are all proteins involved in inflammation in the body.

Believe it or not, inflammation can actually be a good thing. When there is a threat in the body, like a bacteria or virus, the body sends inflammation proteins to help fight it off. So if you have a cold, your sinuses will swell, or if you cut you arm on a dirty nail, it will swell and get red. This is the bodies natural defenses doing its job to protect itself.

But with inflammatory autoimmune diseases, like Crohn’s, there is an overproduction of inflammatory proteins in the body and instead of attacking foreign molecules they “go rogue” and start attacking healthy normal cells in the body. These two medicines are designed to lessen the production or efficiency of the inflammatory proteins in different ways.

Humira

Humira is designed to inhibit TNF-alpha. TNF stands for Tumor Necrosis Factor. TNF is naturally made by certain white blood cells in your body and is part of an essential systemic immune response. TNF is an important protein that signals hormones and the production of other proteins involved in inflammation

However, when you have an autoimmune disease like me, there is too much TNF-alpha, and it starts to attack healthy cells (intestines in my case). Humira works by binding to the TNF, which blocks the “create inflammation” signal from reaching other cells and attacking the body. It slows the progression of inflammation

Blocking the TNF means you will have less inflammation (ideally). But this is why its also called an immune suppressant. Without the proteins that react to foreign molecules, there is no (or less) inflammation response, and a simple cold can turn into a very bad infection because the body’s defenses are inhibited.

Stelara

Now, Stelara works in a similar way to humira, only instead of targeting TNF-alpha proteins, it targets IL12 and IL23. Interleukin 12 and 23 are proteins that are further down on the inflammation cascade, you can think of them as TNF’s children. People with Crohn’s disease (and other autoimmune disorders) have elevated counts of these proteins.

These two proteins are produced by repeated inflammatory stimulus, like the signals from too many TNF proteins. So in the event that TNF blockers (humira) have failed, the next option is to try blocking IL12 and IL23 from producing an inflammatory response.

This is why I have been switched to Stelara from Humira. Since I had a perforation while on Humira, its considered a failure of that drug and now we are trying a different class of medication to target different parts of the immune system.

Being an Ostomate is hard sometimes…

 

Sometimes being an Ostomate (having a ostomy/stoma) means you have to take a shower at 12:30 am because your appliance failed and leaked.

As most of my friends and family know I am a night owl, so I went to change the dressing on my wound at about 11:30-12. As I pealed the gauze away I instantly knew something wasn’t right. My wafer had leaked on the side closest to the wound. It is very hard for me to get my wafer to stick on that side because I have to cut a lot of the tape away so it doesn’t cover my wound. Cutting the tape takes away the anchor for everything to stay where its supposed to, so the side I have to cut lifts up and causes problems.

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This is how the wafer comes, equal tape all around.
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And this is how I have to cut it because of my wound.

I have no idea when the leak occurred, sometime in the last 24 hrs. I was instantly devastated because I just did not have the energy to deal with a shower and a pouch change, and Cody was not here to help me. So I was on my own.

The worst part of the wafer leaking is that stool that comes from your small intestine is much less “processed” than it is when it comes from your colon, and it is VERY damaging to the skin. I got all my supplies together in the bathroom and carefully pealed off my pouch with the help of adhesive remover, terrified to see what my skin looked like.Thankfully it wasn’t too bad at all, there was some redness and irritation, but it was mild and the length of my shower was enough time for my skin to breathe and recover.

Now, whats worse than having to do a midnight pouch change?!?

Having to do a pouch change WHILE my body is covered in a horrible itchy rash! Ugh! I cant catch a break tonight! I’ve been getting this really random rash almost every night this week. It comes on super randomly, happens if something brushes against my skin, or if I scratch myself. It gets raised, red, hot, swollen, and SUPER itchy!! and once it starts in one spot, it spreads very fast. Its awful! And after a while of suffering and scratching myself to death, the rash will dispensary just as fast as it appeared.

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These pictures are of my legs, but this rash is all over my body. It’s just easier to take pictures of my legs.

It seems to mostly happen at night and doesn’t seem to be linked to any food. With some help from some fellow IBD’ers I think it may be either mast cell activation disorder, or dermatographic urticaria (also called skin writing). Now of course I cannot confirm this yet as no doctors office in sac will take me until my insurance is completely transferred to Sacramento county….so that’s annoying. But as far as I can tell if it is one of those things, there isn’t much that can be done for it.

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Anyway that made the shower and applying my new pouch more difficult because I was very itchy! AND on top of ALL that, I ran out of hot water!! Having am Ileostomy 100% saved my life, but being an ostomate is not always easy!

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After I finally got a fresh pouch on. please be gentle, I debated a lot on weather to post this picture….

—I’m working on the comparison of biologics post, it’s taking a bit more time because I have to do some research on the subject. Standby to standby! 🙂

Biologics

I want to talk about biologics.

Not too much about statistics or anything like that but the emotional aspect of it. Personally when I was really sick back in 2011, as a last ditch effort I was put on Remicade. Only had 2 doses and was just getting sicker. I truly believe I was just already too far gone for a biologic to work on my colon. So they took it out.

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I was off of any medication for a couple years and then it was determined that I would benefit from being on Humira. I was on Humira for a few years, achieving complete remission and no evidence of disease. Now “shot day” was of course not my favorite thing and I hated doing it, even after I discovered that Injecting in my “love handle” region resulted in little to no pain most of the time. I was perfectly content with my regiment of one shot every other week and suffered no side effects other than pretty sensitive skin, but otherwise nothing!!

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Then this horrible spontaneous intestinal perforation occurred. Nobody could tell me (because nobody knew) why or how it happened. The doctors tell me the only “logical” reason for it was my Crohn’s disease burrowed a hole in my bowels. So the only “logical” thing to do was to change my biologic.

I HATED hearing this. I was so happy and healthy on Humira I really didn’t want to change anything. But what choice do I have?! If I refuse medicine they would most certainly not reverse my ostomy. I asked around in some of the support pages on Facebook and of course got various answers as to which was the “best”. And then my doctor basically just chose one for me, Stelara.

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I felt like I was in the dark with no choice really but I want reversal surgery again so bad I’ll do anything. So I agreed to start Stelara. And again I turned to Facebook, which may have been a bad Idea because I was faced with “oh you should go on this med instead” “I’ve heard this one is better” “oh the side effects of that drug are horrible”. How terrifying right?! Here I am trusting my doctor with what he thinks is best for me and my case of Crohn’s disease and I’m being met with “don’t do it” from other angles.

It’s amazing the emotional turmoil that can be caused just by changing one medicine. But this one medicine can make or break me in the long run. The good news is now, instead of every other week, my injections are only every 8 weeks! So for now I have had my first IV infusion dose of Stelara, and the second injection dose. My next dose is due in February. And all I can really do is hope and pray that this biologic is the answer for my body to get back to being healthy again.

In another post I will describe how Biologics work :).

Remembering the Good ‘ol Days

I’m having a bit of a rough emotional day today. I was going through pictures on my phone to try to make more space and I found myself very sad. Looking at the pictures from the first half of 2017, before my whole life got turned upside down, AGAIN! Seeing the pictures made me remember all the great things I got to do last year, and how great I felt in my own body. I find myself still sad, and more so, still angry. Why did all of this have to happen?! I was healthy, I had my Crohn’s under control (or so I thought), I had a great job, and most importantly I was in school pursuing my dream to be a nurse.

I’m angry I have an ostomy again. I know how to care for it and all the tricks to make things easier on myself, but I hate it. The taste of freedom I had after almost 5 years with a stoma was amazing. My reversal worked out so much better than anyone had imagined. I could eat whatever I wanted without having to worry too much, I could wear jeans again, I could shower every day if I wanted to without worrying about the seal on my ostomy appliance, I felt normal again.

I almost feel as though I have been put back in jail or something, only I didn’t do anything wrong! Now I know its not the end of the world and I am getting better every day, but everything that has happened has changed my body so much. Its hard to have confidence at all right now. My hair is falling out in handfuls, I’m still way too skinny, I’ve got more scars, NONE of my clothes fit anymore, my skin is a mess, my teeth are extra sensitive, and my body seems to have forgotten how to regulate my body temperature.

I realized yesterday that as much as I despise shopping, I need to get some clothes that actually fit me before school starts. I AM getting my life back on track, and I’m sure all of those physical things are fixable and will get better in time, but I miss my “normal body” the one without the extra scars, or a stoma. I hate looking in the mirror right now, it usually makes me cry. My body is completely different than what it was and I don’t like it.

I know I will continue to get better, and I will work hard at my health and my self confidence. I just want to feel like me again, I want to feel normal, I want to BE normal again.

Progression of my wounds from the beginning *WARNING!! graphic pictures*

Part of the purpose of this blog is to show the good, the bad, and the ugly of Crohn’s disease. so this post will be showing you the progression of the wounds iv’e been dealing with from the very beginning. **WARNING** the photos are VERY GRAPHIC. They are documentation of the progression of my open wounds on my belly from surgery, and show blood! This is a pretty long post….But it’s been a REALLY long road with these wounds.

 

 

 

*******WARNING!! GRAPHIC PICTURES BELOW THIS POINT********

 

 

 

 

 

*****LAST WARNING, GRAPHIC PICTURES*****

 

 

 

 

 

 

My emergency surgery was on 9/12/17. This is what it looked like on 9/17 after the bandage/wound vac came off. At this point everything looked good.

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This is when everything started to go downhill. Taken 9/22 and 9/26. The very bottom of my incision opened up and was draining serous fluid. At this point the doctors weren’t too concerned.

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Taken 9/30. still draining.

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Taken 10/3-10/5. 4 days after I was discharged, I was readmitted overnight to receive a CT scan to check my abscess AND they decided they needed to actually open up where it was draining so it could heal properly. This was NOT a fun procedure!!

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on 10/10 I had a follow up visit where they decided to cut ANOTHER hole in me! there was an area above the first wound where the skin became really thin and there was a bunch of fluid underneath. so now I had 2 wounds. Taken 10/10.

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Taken 10/15, 10/22, and 10/25. Seemed like things were healing, but very slowly!

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On 10/27 I had a follow up with my original surgeon to descuss reversal and so she could check the wounds. She actually opened up the top wound a little bit more. And cauterized the original wound with silver nitrate. Taken 10/27 and 10/29.

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Taken 10/31 and 11/1. after being cauterized the bottom wound seemed to finally close up, while i was still packing the top one.

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Taken 11/6 and 11/19. On 2 separate occasions I had ANOTHER hole open up above the second one, AND the bottom wound opened back up again. Still packing the “middle one” every day. At this point my surgeons office had kind of written me off saying “good luck, you have Crohn’s disease so it’s going to be hard to heal the wounds” and were not offering really any help anymore.

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Taken 12/3 and 12/10. in between the above pictures and these ones, there wasn’t a whole lot changing. I did get see my primary care doc and got referred to the wound center during this time. The wound center re-opened up BOTH wounds AGAIN.

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*****OK IT GETS SERIOUSLY GRAPHIC AFTER THIS POINT****

 

 

 

After a couple visits at the wound center and then trying to treat the small stubborn wounds, the wound care specialist decided that I needed to see a surgeon so that he could clean it all out in the OR and remove some left over stitches that didn’t dissolve correctly. On 12/12 I had surgery to remove the stitches that were causing so much pain and to clean out the wound area….I DID NOT expect to see this huge hole in my belly when I had to change the dressing for the first time!! Taken 12/12, 12/13, and 12/15. It was big and scary and it HURT!

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On 12/18 I received a wound vac. This is basically  a suction device dressing. It seals around the wound and keeps it at a constant pressure of 125mmHg. It was sometimes difficult to get the vac to seal correctly since the wound was so close to my ostomy. There wasn’t much skin left for the vac to seal to but we made it work the best we could.

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This was taken only 2 days after the wound vac was put on, 12/20. It hurt like hell to get the sponge taken out but I was amazed by how much it had filled in after only 2 days!! The wound vac was rumored to help woulds heal in half the time!

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Taken 12/22, 12/29, and 1/2. Taking out the sponge was excruciating every time, but I was always excited to see how much better it looked after the torture. And 1/2 was moving day BTW, and the day I got the wound vac off (since I was moving out of town).

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Taken 1/3, 1/4, and 1/5. It’s still amazing to see how well its healing, even without the wound vac. at this point I am just packing it with saline soaked gauze and keeping it covered, changing the dressing once a day

 

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Taken 1/6, 1/7, and 1/8. Every day I can see a little bit more scar tissue spreading and filling in the wound. The pictures almost don’t do it justice, but you can still see the progress.

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Aaaannnd that brings us to today! i will do another one of these to finish out the progress till its completely healed, hopefully not much longer!! Things are still going very well and it doesn’t hurt much at all anymore, only if I twist or do something I shouldn’t. Man, I can’t wait till this is finally closed up!

 

 

 

 

 

Exciting Things Are Happening!

        I’m starting to get pretty excited for my new start here in Sacramento. The last week has been spent settling in and exploring what is around us. Its so crazy (in a great way) to have so many different stores around within just a few miles of our home. I even found a Trader Joe’s today!! I LOVE that store! I actually worked at the one in Santa Rosa for about 2 years. I haven’t lived near one in a lil while, and was super excited to find one just about 10-15 min from the house! I went a little crazy in there! Couldn’t help myself!

        We have pretty much got most of the house put together now. Still have a couple more boxes, but we need to get a bookshelf so we have a place to unpack at least one of the boxes! Otherwise most things are put away now and I’m enjoying not having all the clutter everywhere!

 

        Niko is adjusting very well. Though he keeps one of us (mostly Cody) in his sights at all times lol. This morning I opened the door to the patio to try to get him to go potty in the area we set up for him there, but I don’t think he understands yet. But it was pouring rain! And Niko HATES the rain! He was begging to go out the front door, and I told him “you aren’t going to like it!” but put on my jacket and rain boots to take him out. I put his jacket on too since it was raining pretty hard and we got about a quarter of the way down the stairs (we are on second story) and as soon as his paw touched the wet step he froze!! I literally had to DRAG him down the stairs and drag him onto the wet grass to get him to pee! He was not a happy pup.

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        Today I was finally able to talk to someone from Mendo county to start my “inter-county transfer” for health insurance, after calling many many times! So now I have to wait a few days and then call Sac county and tell them to hurry up because I cannot be without a doctor for much longer! luckily I am still healing very well. I change my wound dressing once a  day and seems like it gets a little bit smaller every day. Overall I feel pretty good, I had a small blockage last night but was able to pass it with fluids and the last of my pain meds…hoping that wont happen again until I have a doctor that can refill my meds! Other than that I’m getting a tiny bit stronger every day and feeling pretty good.

        The other exciting thing is school! The day after we moved I had orientation at Sac State! It was a very long overwhelming day, but very informative! I start school on the 22nd, and am getting excited! I have wanted to go to Sac State since I was in high school! And I’m FINALLY living it and going to my dream school! Its already been a long journey and I’m sure there is much more to come when it comes to school, but gosh darn it! I will become a nurse!!

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