#hiddenillness

"The doctors are not OK"

Trigger warning/graphic photos ahead

My goal for 2019 was to sell our house and try to get pregnant. I was told by my surgeon that I should have a baby before I reverse my ileostomy. Even though my colon was removed in 2017, at this time I still had my rectum with active UC(Ulcerative Colitis). My surgeon said I couldn’t wait more than 10 years to get this removed and my ileostomy reversed because the disease can affect other parts of my body. Even then, I am not 100% cured. Since UC is an autoimmune disease, I will always have issues in some way. The disease manifests in ways other than bleeding ulcers in the colon. I’m prone to mouth ulcers because of this and I also believe, although I’ve not read this to be proven, that my skin issues are also a manifestation of my autoimmune disease. I deal with this later on in 2019. I’m also always tired and exhausted from all of the pain both mentally and physically.

At the beginning of 2019 my skin issues around my stoma continued to be bothersome. It had been months and months of having issues with my ostomy bag not wanting to stick and my skin oozing non stop. It wasn’t like I could just treat the skin and be done with it. Anything I would put on my skin would interfere with the adhesive of the bag. So I would cut around the edges and basically jerry rig my appliance so that I could treat my skin in different areas with each bag change. I will say this. For 2 years of having this ileostomy and all of these issues, I only ever had one leak; meaning I only had stool push through the adhesive and get all over me one time. Just one. That is actually really really good. My support groups are full of people that have been worse off than me. I was also fortunate to only have to change my bag once while in public and it was at work. I found a single person bathroom with a sink to use. My surgeon once told me that my stoma was very pretty and she herself thought she did a great job. She was an amazing surgeon here until I got a letter saying she was moving out of state so I needed to find a new surgeon. That was devastating and I definitely cried over it knowing that I would have to start over with someone new.

In April 2019, I finally had allergy testing done. I was actually supposed to get this done in 2017 but they called while I was in the hospital. So the first round of allergy testing was all environmental. They put these patches on my back(not what’s pictured) and they read them same day. They were all negative. Then they used needles to put the most common environmental allergies on the inside of my forearms. I wish I had pictures of that. This may sound like it was painful but it really wasn’t at all. The needle only goes through the surface of the skin. I had so many needles stuck in me in 2017 that I didn’t think twice about this test. This test was also negative. So great news, I have ZERO environmental allergies! A few weeks later, I had the chemical allergy test done. This is the white patches on my back in the picture. I had to go home with these patches on and come back in 2 days and have it read then. I wasn’t allowed to shower through that time nor was I allowed to sweat so I couldn’t go to work. Good thing I’m also a side sleeper. After they read the results, I had to come back in the next day and they read them again. Guys, I’m allergic to some pretty weird stuff:

• Balsam of Peru

• Benzoyl Peroxide

• Butylphenyl Methylpropional

• Carba Mix

• Cocamidopropyl Betaine

• Coconut Diethanolamide

• Compositae Mix

• Decyl Glucoside

• Fragrance Mix

• Iodopropynyl Butylcarbamate

• Nickel Sulfate

• Paraben Mix

• Propolis

• Propylene Glycol

• Thiuram Mix

• Ylang-ylang oil

May of 2019 was a pretty good month. Although I don’t have pictures of it, we went to Tappers Arcade Bar with some friends and we decided to ride the scooters around. The entire time I’m riding, we’re looking for a scooter that wasn’t dead for Issaac to ride. We came across the guys who picked them up and charged them and they started to help look. One of them got on a scooter and was riding pretty fast. We were in this narrow sidewalk and he came flying on my right and I got scared and ran into the half brick wall on my left. I scraped my ankle a little bit but I was pretty much fine. That is until I lifted my shirt...I did that, annnnd my bag fell on the ground in front of everyone. I immediately pulled my shirt down and laughed. For a second I didn’t know what to do and I was like oh I should probably pick that poop bag up off the ground before that guy comes over. I quickly grabbed it and he rushes over. He’s freaking out and worried I got hurt because of him. I reassured him that I was fine. The whole time he’s coming towards me I’m quickly walking towards Tappers while hiding my ostomy bag and my friend is with me the whole time. At this time I was wearing a two piece system so usually I’d be able to click the bag back on. When I hit the bricks, it broke the plastic so I wasn’t able to put the bag back on. Tappers was a ways down the street and we went to the bathroom and Issaac ran to the car to get my supplies down the block. Why he didn’t use a scooter I have no idea! And it turned out I still had the car keys. So my friend came in the bathroom and got the keys for him. She then returned and helped me because I couldn’t really do this on my own without doing it in front of strangers. I basically had my shirt covering my stoma so it got poop all over it and I needed help getting it over my head without it getting all over me. I was actually laughing a lot about this. I just thought the whole situation. Was hilarious. And I had a really fun time on the scooters.

Although in May I had a good time, I was still struggling with my skin issues. My allergy test didn’t really help in that area because a lot of companies won’t release all of the ingredients to their products. So it was then after very hard consideration and talking with Issaac that I decided it was time for a reversal. This meant that I was putting myself at a high risk of not being able to get pregnant. My GI doctor had told me at the beginning of the year that it was probably time to do it now rather than later because I was having a lot of abdominal pain with no explanation. It turned out that my diseased rectum was causing me a lot of pain and I had an ovarian cyst that had burst. So there are a lot of options for me if I can’t get pregnant. I’m a big proponent of adoption. I’ve also thought about IVF and surrogacy. All of these options are really expensive though.

On June 20th of this year, I had a Proctectomy, with a rectal mucosectomy, ileoanal anastomosis, creation of ileal reservoir (JPouch), with a loop ileostomy. In simpler terms, I had my the rest of my rectum removed which was about a foot long. I had my stoma stapled shut and put back into my stomach and my small intestines pulled down to my butt. They used the end of my small intestines to create a j shaped pouch that will act as a new rectum. Then they took a different part of my small intestines and created a new loop ileostomy. My previous one was an end ileostomy where the end of my small intestines was the stoma. A loop ileostomy comes outside and then back in but still with only one hole for output. It’s much smaller and a lot harder to handle. A loop ileostomy is required so that my jpouch can heal.

My recovery from my first surgery was hard because I was so sick beforehand. This surgery was hard in different ways. I had a different surgeon so he put me on different meds that I had never been on before but he was a great surgeon. I remember one was Gabopentin and I can’t remember the other but I was also on 3 different nausea meds. I ended up getting very very sick and I couldn’t eat my food. Imagine throwing up immediately after having abdominal surgery. I thought that I had been through the worst pain but this was just awful and I remember it very vividly. Issaac would hold a bowl for me because I couldn’t. Then a doctor came in who for some reason I thought he was there for pt but he wasn’t. I still don’t know what kind of doctor he was but he was just there to check on me. I started to throw up while squeezing a pillow into my gut and he held the bowl and held me up. He continued to hold me up and I just kept throwing up to a point where it was just stomach acid. He was the only reason I didn’t fall out of the bed. That there is a great doctor and I can’t even begin to express how grateful I am that he did that. I know it’s his job to be there for his patients but I feel maybe it’s not normal to go home and say you held someone as they threw up over and over and over. I imagine I can find out who he is now and thank him again. So out of the 3 nausea meds, only one really worked but I can’t remember what it’s called. I felt that the new meds were making me sick so I made the nurse request them to be switched to morphine and Oxy like before, only because I knew I reacted well to them. After that, I never got sick again and was able to eat. Another thing that was different with this surgery was my shoulder pain. It was very uncomfortable and I had never felt anything quite like it. I had to use ice packs and lidocaine patches to battle that pain. I guess the pain was from gas that they had injected into my incision after cutting me open to expand the area.

When I got home, I had severe issues with my stoma that I didn’t realize before because the inpatient stoma nurse would change my bag and didn’t say anything about any problems. The sutures had failed all the way around and created what looks like a moat around my stoma. This caused the nerve endings to be exposed and it looks blood red in the photos. Then, my incision glue came off and my incision came apart. For this surgery, they went through the same incision from 2017. My incision created a hole and got pretty deep but not deep enough for reconstruction. I went to see my stoma nurse and she was a God send. She showed me what to do and I had to change my bag style to a deep convex to help get my stoma more above my skin level. The convex basically pushes my skin down. It took me awhile to get a handle on changing this bag with this stoma. My output was much thinner and more frequent because my stoma was higher up in my intestines. My stoma was also much lower on my belly and in a dip of my stomach which also caused problems. The surgeon couldn’t bring it any higher. Because of where my stoma was, I had to have Issaac help me change my bag. He has been great throughout all of this. I would shower and he would set up a station with everything needed to change my bag. I would cut everything and apply everything but he was essentially my eyes for where I couldn’t see. I couldn’t hold a mirror and apply everything because I was laying down. Before with my old ileostomy, I could change it standing up within 5 minutes. This ostomy had me in tears so many times. There were a few occasions where it took us up to 5 hours to change the bag because my output wouldn’t stop. *** In the pictures provided, you can see where my original stoma was and there’s a ring of damaged skin around it where my appliance was. My skin is starting to heal and scab over. It took a couple months for that to go away.

To prepare for my next and final surgery, I had a procedure done called a Contrast Barium Enema. They laid me on my side on the CT bed and inserted a tube into my bottom and injected contrast. They then took xrays while moving me in different positions. This was pretty uncomfortable and I hope to never do it again.

Pre op: Today September 26th, I’m having a loop ileostomy takedown surgery and a flexible sigmoidoscopy. And of course this morning I started my period and am having full on symptoms with cramps and fatigue. No wonder I haven’t felt good the past couple of days. I woke before my alarm this morning. I didn’t sleep well. I’m nauseous and I guess it’s because I’m scared? I don’t know if I’m scared of the surgery itself or if I’m scared of afterward. I think it’s the latter. Right away I told the nurse that I’m a hard stick so she called the team with the ultra sound so as to not waste time with my iv. I really appreciate that. Now it’s just waiting in bed until they get here. 🤘🏻 So a nurse decided to poke me anyway and failed. I do have an iv now in my upper left arm that was done with the ultrasound machine. I’ve got the nausea patch on too.

The surgery was a success. It’s now a few hours after. Waking up was really rough. I couldn’t stop crying and I was nauseous and in pain. They gave me Diladid even though I said before surgery that I didn’t want that. Then they gave me morphine and Oxy and it it took awhile but finally I woke up with no pain. I walked to the bathroom with help which was hard. It didn’t hurt to walk but I’m just so out of it. Even as I write this, I’m nodding off. I just want to get everything down before it’s hours later and I forget everything that happened. I’m still waiting on a room but they just delivered me some Powerade Zero. I ordered that but they first brought me regular Powerade and I made them switch it. So I will be in here for a few days, until I have a bowel movement. It feels so nice already laying in bed and not having the weight of the feeling of a plastic bag on my belly. I feel free. It’s just so liberating.

Thank you for reading this far. I just really needed to get my journey out so it doesn’t feel like it never happened. If this helps just one person either mentally or physically then I would be ecstatic. 🤘🏻✌🏻👩🏻‍🦰

Years of scapegoating rhetoric & politicians casting #disabled people as “scroungers” have reinforced prejudices about the blue badge* parking scheme & led to “envy & resentment” instead of equal access, according to a 4-year research project

*a blue badge is what a disabled parking badge/permit is called in the UK

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In the survey, 74 per cent of disabled people said they had been accused of “faking” their impairments while using their blue badges.

5th and final post in thread:

If you’re the one struggling…you don’t have to justify your pain. You don’t owe anyone an explanation. Your experience is real, no matter what they see. “You don’t look sick” has never been a compliment. It’s a reminder of how much people don’t understand. But in this community, we do. You are not alone