Content Warning: Gross Poop and OSTOMY talk here! Leave now if you don’t want to read about how my first six months with Gob have gone.
I can’t believe that I’ve had Gob for six months today. I really can’t. I also can’t believe that I was diagnosed with gastroparesis almost a year ago. I started having testing and things back in August of last year, so it’s been a long circle for me that has lead to this ileostomy. A few people (mainly family) thought I just jumped on this ostomy, but I had been suffering for months after trying tons of drugs and the only reason no one knew about it is because there is so much shame involved that I didn’t want to tell anyone about it. I didn’t even want to tell my doctor about it (!) and I cancelled my appointments a couple of times before I sucked it up and went in to discuss all this! Then the testing itself was beyond humiliating too. You just have no idea. Or, maybe you do.. I hope not!
Surgery itself was fine enough but I did suffer a mucotaneous separation that we are still trying to deal with even now, six months later. I’m really mad about it because the truth is, once I had Gob “installed” no one has been all that helpful with him. The doctor has not bothered to look at him once. She’s tried to look through the bag, but you cannot see through all of the shapes and dressings we need to pack the wound with still. More like, she’s made an effort to look like she’s trying to see through the bag but she refuses to take the bag off or let me take the bag off when I go in, and I guess that’s pretty common behavior for surgeons.
I saw another surgeon about it and they would not look at Gob either. The nurse I saw was pissy with me and told me to go back and make them take the bag off. Right. Make them. ::Eye roll:: I advocate for myself really strongly and trust me, there was no “making” them take the bag off. I told them I had the stuff right there, etc, but they would not let me. So, no one but the nurses who came to the house plus me and Master Pravus have seen Gob’s wound and it’s annoying as Hell.
I’m supposed to have my colon removed still and so we’re less worried because if they’re going to move Gob around then anyway then the wound will be stitched back up when they do that, but it’s still pretty frustrating. I feel like I should be able to make a doctor’s appointment to have Gob looked at, but once he was installed no one wanted anything to do with him. We actually wound up in the ER for him once (the nurse sent me!), and Master Pravus noticed the exact same thing there. No one wants anything to do with my stoma. Could I just be running into bad doctors? Maybe. I hear this is pretty common though.
So, other than my problem with the separation, how do I feel since having a stoma? Well, I would definitely not go back to the way things were pre-surgery, unless they could cure my problem so I could use the toilet like a “normal” person. If I was suffering every single day and unable to be active or carry on my life the way I was, losing sleep and feeling sick every single day then I absolutely would want to keep Gob around. Gob himself has made my life a lot better.
I don’t think about things like the bathroom and I am able to be more social, to work, and to enjoy life more. I have other challenges but at least my colon is not one of them. I have never had a “leak” that has gone past my wafer, which is probably because I’ve never been able to go longer than three days without changing my wafer, and more often than not have to change it daily due to that wound I’m still dealing with. We carry supplies with us everywhere just in case I ever had a problem, but I’ve never ever had to change my bag in public… Yet. I guess there’s a first time for everything though so I’ll not say that it’ll never happen. Hahaha!
It has been frustrating to find a bag that is comfortable, but I knew it would be. My skin is very fragile and always has been, so I knew having a sticker on my skin all the time was going to suck. It still does suck less than pre-surgery, but it’s awful. There is one brand of bags that me and Master Pravus love. I wear a “mini” bag in it (I don’t eat a lot, so I don’t need a full sized bag) but the problem is every single brand we have tried leaves a rash after one or two days of wear so we constantly have to change brands despite my cute, comfy mini bag being otherwise perfect. Frustrating.
Still, we knew it would be a challenge, and at least the Insurance lets us get more than one type of bag. We have learned a few ways to make the bags last a bit longer without leaving red marks all over my skin (if the wound is holding up) but it’s still a challenge and as I type this no bag is lasting longer than two days at best due to the wound. I think that the wound is worse because it’s Summer, which means it’s a lot warmer. Yuck.
When I was still in the hospital, Master Pravus bought me a bag cover for Gob, so we wouldn’t have to see him all the time. We got it in the mail a few days after I got home, and I really liked it but I’ve had to switch from normal bags to convex ones due to my wound. Unfortunately, the bag cover we bought doesn’t really fit the convex bags, so we made me my own, we’re working on making more but we haven’t had a lot of time to do it yet because I’ve been busy with the Mewtique which always comes before my personal projects.
I do have plans to get bags and accessories into the Mewtique but it always takes me a little bit to formulate new patterns, get pictures, etc and get them up. Still, we have a couple of cute little elastic accessories and a couple belts we bought online that we really like too and those have been really helpful with Gob. My ostomy nurse wants me wearing a belt 24/7 and I really dislike wearing one so we bought some baby elastic and made some softer ones to wear to bed. It’s not such a big deal during the day, but who wants to sleep with a belt on? The baby elastic feels like I’m not really wearing anything for the most part so at least I’m wearing something to bed though. Plus, it has cuter colors.
I’ve been pointed in the direction of ostomy underwear a couple of times but I never see anything that is really my style. I’ve been mainly wearing boxers or bloomers or high waisted panties because those are the things that fit over Gob. I always wore low wasted things before (I hate the feel of things near my belly button) but it’s something I’ve just had to get used to. I have purchased a couple of cuter high wasted things and I’m trying to find things that fit my style and that Master Pravus finds sexy. It’s very hit and miss, especially with undies because you can’t try before you buy.
I haven’t worn a pair of pants since I had surgery. Well, I had to wear the pajama pants I wore in the hospital back home, but no one measured me before surgery while I was wearing pants at all and they just kind of stuck my stoma where they thought it looked good without thinking about pants. Pants always sit on top of Gob and I haven’t figured out a way to make that work yet because if pants sit on top of him then he won’t be able to empty, which is not helpful. I have yet to try high wasted pants, but they would probably have to be a bit on the loose side to allow for the bag and all so I probably won’t bother. The only time I really ever wore pants anyway was when we were out on our daily walk or if I was working out and I’m not really well enough for high intensity workouts at the moment anyway so it’s not really something I have to worry about for the time being.
I had no idea how much soda I would be drinking after surgery. Prior to surgery I think I had maybe two cans per year, and that was only ginger ale, and only as a last ditch effort to try to help nausea. I hate soda. I hate it I hate it I hate it. I can’t stand fizzy drinks, they taste disgusting to me. I never liked fizzy drinks of any kind, even as a little girl. I don’t like beer, I don’t drink seltzer water, and I don’t like champagne. Growing up it was always lemonade, or tea, or juice or water or milk. They did tell me that blockages were fairly common with ileostomies, (even partial blockages) and that if they happened to drink a ton of fluids and one of those fluids should be cola. Ew. We keep cola around the house for Master Pravus but now we buy special decaf cola for me because if I had to drink a ton of caffeinated cola I’d probably never sleep. I also wind up drinking some grape juice, but that’s not so bad! Grape juice is delicious! Considering I subsist on fairly bland and pureed food I had no idea I’d have so many issues with blockages, but I really have. I’ve had at least one per month, and this month (July) I’ve dealt with problems every single week. It seems I only just get better and am able to eat what is normal (for me) for two or three days and then I either make a mistake or something happens and wham! Another blockage. Thankfully I’ve never had a complete blockage (you need to go to the hospital for those!) but it’s still no fun and makes you feel like complete shit. There are days where I have so much soda to drink that I don’t even get one glass of tea. To most people, that’s no big whoop, but my tea is the one thing I really enjoy “eating” each day and it’s a huge bust to morale to be stuck drinking something I despise.
I talk to Gob sometimes. Not serious conversations, god no. Sometimes I’ll be changing my bag and I’ll just mutter under my breath “Look what you did!” You don’t feel it when you are outputting, and it’s sometimes a big surprise seeing what winds up in there.
We see Gob as a separate being from me, which is kind of funny. We usually change my bag together (unless I’m having a problem and have to change when Master Pravus isn’t home) and when we take the wafer off, we both talk about him like he’s someone else but attached to me.
“Oh no! I feel so bad for Gob. Look how swollen he is today!”
“Oh, Gob looks pretty healthy today.”
“Look how nice and happy Gob is today!”
It’s kind of funny how we do that, I think. Talk about Gob like he doesn’t involve me at all, but we do. There’s technically no nerve endings in a stoma, so you can’t feel it when you’re cleaning it and all that, but the skin around Gob has plenty of nerve endings so you can feel it when you’re cleaning it. It’s not a big deal when things are okay, but if the skin is abraided or broken you can tell for sure. We’re getting really good at it though. It used to take us at least an hour to an hour and a half to change Gob (mainly because the wound was a lot bigger!) but now it’s down to about thirty minutes. The process is still about the same, except the wound is smaller. I’d be so thrilled if this thing ever completely healed. Ha!
It’s not really related to Gob himself, but the Heparin shot I got in my tummy in the hospital? You can still see the mark. It’s a bit faded, but it’s still there, six months later. Master Pravus is always pointing it out, too.
“When do you think that thing is going to fade?”
“I have no idea!”
It’s crazy to us that it has lasted this long, but I’m a slow healer, so.
Figuring out what to wear at first was really hard. Everyone says things like “You can wear whatever you wore before,” but that isn’t true at all. I’ve been slowly rebuilding my wardrobe (aside from the panty issue I’ve already mentioned) because, I mean.. You can wear whatever you wore before, but there’s also a good chance everyone will see and know you have something under your clothes. Though they may not know you have an ostomy, who wants to have a bulge there? I always liked babydoll style dresses but I wear them a lot more now.
Looser things won’t show Gob’s pouch. When the bag is empty it’s not an issue, but obviously as you are out running around, or sitting in class or doing whatever you do in the day your bag is going to slowly fill. While it’s filling it’ll be more and more visible. Once you can empty it again it won’t be obvious anymore, but it’ll slowly start to refill. It does take some planning, and you do need to buy special clothes, belts and accessories to make your ostomy less visible. I bought a couple of belts that double as covers from a guy on etsy (email me if you would like the link, he is amazing!) and if I wear them I can wear my “normal” panties which is awesome when I have my period or something.
My day to day life hasn’t become a lot more complicated with Gob around. I spend a lot less time in the bathroom, which is great. I still suffer a lot with blockages now, but at least I can still get around a bit when I have them, and so far, they have always passed. I would love if we could fix my stomach someday and I didn’t need Gob anymore, but honestly, living with Gob is not the worst thing in the world either. While there are things I wish I could change about living with him, living without him was a lot worse. So, here’s to Gob being six months old! Happy six months Gobbie. <3 Thanks for improving my quality of life so much!