So ten days till surgery #2. How am I feeling you ask? (even if you didn’t ask I’m gonna tell you) Well at this very second….I feel good. I’m not nervous, I’m ready to go, I’m antsy, I’m getting bored at home…but I’m also really bummed that I’m esstentially starting to say goodbye to my year…I feel like it will be spend on the couch for the next 4 months. I had a good summer over all, I did enough things to where I feel like having an ostomy didn’t phase me and the things I did or wanted to do. I went swimming, I rode my motorcycle, I played with my niece, and so on. The only thing that I really found annoying with the ostomy, was exercising. When I would sweat the bag would get sticky and the wafer would also get sticky on the edges. Yea its kinda gross. Anyway, surgery, coming up…send care packages.
Why is this guy playing ping pong?
I met up with a friend of mine yesterday, who I haven’t seen in about a year. A great friend who I wish I saw more. And she asked to see my bag. Then after that I showed her my stoma. I’ve only had one other person ask to see it, and perhaps they don’t want to ask because its weird but I have to tell you. Its nice when people ask. Its like they aren’t freaked out by your poop disease, or that you wear your poop around like an accessory. I wish more people would ask, instead it just seems like the world is grossed out about it. I mean if I had a transparent bag I might not show, but its opague dude. My family has not asked to see it. Granted sometimes it hangs out, or I dont care to cover it the way I do around others, but there is just something really comforting when someone asks to see it. Weird.
Also as an update. UC is a real tricky fucker. So…here I am all thinking I outsmarted UC by removing my colon…yea well I did not win this war. Apparently due to the fact that I still have some of my
Dont ask. I googled Flare.
rectal stump (I hate that there is no other term for this. Rectum is not on my list of words I like to say), I also still apparently have UC. Oh and get this….its being a bitch! Yea the like 3 inches of bum I have left is flaring?! WHAT. Seriously, UC, seriously? This is such crap. So basically its like the urgency to go again, even though there is no plumbing. Its the urgency and also the straining, except this time I could really strain forever because nothing is coming out of there. Also there is some weird discharge but its like what I’ve had this whole time after surgery just more of it. So I notice this, of alltimes, at Camp. Awesome. So I talk to the GI doctor on site there and I give him the scoop, and like the rad dude that he was he wrote me a script on spot without any stupid exams. I also emailed my surgeons nurse to ask her opinion. Thank god for cell phones with email. Anyway, awesome GI, gave me a script and I’m all wahoo gonna fix this crap. And then I remember.
Butt foam
My mouth is not connected to my butt.
Bummer.
So he gives me a script for Cortifoam Rectal Foam (theres thats damn word again). Its a fantastic foam you just shoot on up your butt. I have been lucky this far in that I have not had to shoot anything up my butt, or have suppositories. The amount of instruments up the pooper has been minimal at best. I suppose I was due.
So I get this foam, and I look at it like, ugh. Double ugh. Then I decide to just make it my bitch, and get it over with.* Honestly it did make me feel a lot better. Less urgency, far less blood. The blood freaked me out again. Its been so long since I’ve seen the blood like that. Its never fun to see tons of your own blood, let alone when you know its coming out of your butt. So long story short here, you can still have a UC flare when you have an ileostomy depending on how much RECTAL stump you have left….and if you do get a flare, good news, you can treat it by shoving a giant syringe up your ass. No seriously, on a brighter note, I know that I am technically flaring right now. But I don’t feel it. Its only flaring in the one small spot, but I’m not fatigued or drained or dizzy or feverish, or all that other bullshit I used to be when I had a stupid colon. I do have more frequency right now because of it, but its pretty awesome to know that if I still had a colon I would being sick as hell right now, and well, I’m not.
*I’m pretty sure due to the nature of the rectal foam instrument, I was made it’s bitch if you wanna get technical about it.
I know how you feel. When I was getting close to my surgery to close my stoma, I was anxious to get it closed but I was also nervous about how well I would adjust to using my J-pouch. It seemed like I had just gotten comfortable with living with and caring for the bags and part of my insides that was facing out and then it was time for it to go away… I sure don’t miss it now.
I was fortunate to not have any UC flare-ups while I had my ostomy, but I don’t think they left me with a stump or else I probably would have. So hang in there and keep up with your meds, even the very unpleasant ones, they will help you with the flare-ups and the pain.
I got my colon removed due to an dismotility disease… I have had (and will have FOREVER the illestomy)… I am having the same issue with my ass- even had a scope to see what was up. Ulcerative Proctitis…. WTF? So now even though I have nothing hooked up to my rectum- I have the urge constantly and have to do the damn enemas. BIG ASS BUMMER.
Oh that is a big ass bummer. Have you tried that cortifoam crap? Honestly, it works…at least for me it did. I cant remember to do it but it did make me feel better. Did they say if that will ever stop, or if they can rip out the butt stump to fix that? Ugh…keep me posted on that one…cause ya know, I like to hear about misery that isn’t my own. No but seriously.
I just want to say that you are rad Jackie. Totally rad. I don’t know how I would handle all that you have to put up with, but you do it in an amazing way and you’re my hero.
I’m sorry you have to stick things in your butt, but hey, if it makes you feel better, you must!
ps: did i tell you how awesome you are. ALSO, i would ask to look at your stoma is I were there.
Secretly I just blog so I can have people tell me all the time how awesome and strong I am. This is all a big lie. I’m truly I big fat albino woman, who has coffee stains on her sweat suit. I live in new mexico.
I want to see it! You should post a picture! I would have asked to see it the first time I saw you.
Oh, and maybe the guy in the photo is playing ping pong to show that can still me normal when you poo out your tummy! Duh.
I can’t believe you still have those symptoms, that is SO unfair. Ugh. Glad the rectal foam worked.
Rectal rectal rectal
That is a super gross sounding word. I mean, if our ears were called “rectums” it would still be a gross word.
I might post a picture. Just cause Im sadistic like that, and I would like to make less people read the crap that I write.
I’m gonna go with butt stump from now on.
“that you can still be normal”
An edit feature would be bomb.
I am reading through some of your posts and I can’t believe how close our experiences are… I had and may always have “cuffitis” b/c my UC was so bad and since there is a little piece of the rectum left that attaches to the sphincter, I may always have UC symptoms… so far none since the final surgery. No bleeding at all since I left the hospital!!! I bled after surgery 1 and 2. i forced myself off prednisone after surgery 1 b/c i wanted off it so badly due to the weight gain and the damage it has done to my body.
My husband has UC and he’s to the point now where he has to make the decision to try Remecade or finally have a colostomy. His doctor said that if gets chooses the colostomy, his colitis is cured. You’re saying that he could still have symptoms after that? Why don’t they tell you that? What’s the point of having the surgery? IS THIS SOME BIG COSMIC JOKE?!!! I won’t be able to tell him anything about this because he has already said he wishes he were dead. I’m so glad I found your blog, We’re new to all this. My husband is suffering so much and we don’t have anywhere to turn to find out what it really means to have this disease. How do I help him get through this? A while ago his doctor recommended what I guess is the foam you are talking about (or maybe it was some type of enema, I’m not sure). My husband never filled the prescription because he didn’t feel that he could hold it in for long enough to do any good. He’s been so sick lately that the stress of that alone aggravates his condition. I feel so helpless when he gets an attack. He’s in pain, he feels humiliated and he is angrier than I’ve ever seen him. I wouldn’t be as brave as he’s been through all this. I’ve had IBS symptoms through the years and I thought that was bad enough. I did not participate in a lot of things I would have liked to because of it, but it is nothing compared to what he goes through. If I were him, I’d never leave the house. When I hear him having cramps, it makes me re-live the IBS attacks I’ve had. How do you cope with this day in and day out?
I am so glad you commented. I am out right now , but in going to respond to EVERYTHING tomorrow! Hang in there!
Ok Sorry this took so long to respond!
First I want to clarify if your husband would be getting a colostomy or an ileostomy? There is a big difference in outcomes.
If hes going to have an ileostomy and eventually end up with a jpouch, that is what they consider the “cure”. Here is why I say that it isn’t. No matter how you look at it, you’re removing a huge important organ from your body. An organ that has a big responsibility. When you take that out, things have to change, and most of the time the change is SO worth it. Live is so much better now. But its not perfect. Colitis also manifests itself in other places in the body like joints…if hes got arthritis, that will not go away even if his colon does. So basically you’re trading one BIG problem for a few small ones. In my experience, its been totally worth it.
As for helping him through this…that is tough. You can listen and be supportive. But I highly suggest that he takes control of this situation. There are AMAZING people on forums and facebook who are all doing this together. Finding support in people who are going through it is key. Chances are he’s going to get depressed…but hes got to just know its going to get better. I know people who have major issues with their jpouches and STILL think it was worth the surgeries.
If it is as bad as it sounds…he needs to consider surgery. I would try remicade first, because its always better to keep your colon if you can. But if you can’t, get it out. There is no sense in waiting on it, because its better to get it out and plan for it, than to have to have it removed in an emergency. Surgery is a long, painful, emotion road. It takes time. But…if he’s like I was, I would have done anything to make it stop. I had a complicated surgery sequence, but I wouldn’t go back. No way in hell. I love my jpouch, and I’d even be happy to live with an ileostomy again if my pouch failed.
The BEST advice I can give you both is ask questions and research. Be a sponge. Try to get as much info as you can, so you know what you’re in for. Ask questions here, to your doctor, or other places online. Even find jpouchers in person. It makes all the difference.