Please read my comments on the other post entitled UC. If you have any specific questions, feel free to ask. I do not yet have a permanent ostomy, but I had one for about six months. I am also a nurse.View Thread
I don't know if I'm even talking about what you needed to hear, but if I'm missing an important piece that you have questions about, feel free to post them and I'll try to answer them.
When I had my ileostomy, like I said at the end of the previous post (ran out of room so had to do another) I was in so much less pain than I had been in for years. And now that I've had it reversed, I have a lot more pain than I did when I had the ostomy, but I have Crohn's. I also had UC, which is why they took the whole colon, but I'm now living with inflamed small bowel, so my situation is a little bit different. But I loved the bag, once I adjusted. You can wear whatever clothes you want (you'll want to start with loose fitting clothes until you get used to the bag and the way your incision feels) and you can do anything that you can do now with a stoma. I was 20 when I had mine, and it was a very difficult age to have to deal with it, but you just have to try to have a sense of humor about it.
Your stoma will fart. You'll be in a room full of people eating quietly, and your stoma will fart. And everybody will know it was you. But you can either be mortified about it, avoid public situations, or you can laugh about it and move on. My stomach is still the loudest in the room, and I assume it always will be.
Antidepressants help. Pictures help. Being informed before the procedure of what to expect afterwards helps. Laying in that bed when you wake up and staring at the big, bloody lump sticking out of your stomach is an experience that you will never forget.
Support helps, which is why I'm here. Like I said, feel free to ask anything. I've got pictures of my bag and my stomach pre and post surgery that I'm willing to share if that will help. I've posted them on here somewhere already but who knows if they are still on here. Just let me know if there's anything I can do to help ease the transition. Once you get used to it, it really is not so bad. Like I said, I learned to love the bag. It gives you so much freedom in comparison to always having to worry about where you can poop next.
Oh! Another tip! Baby wipes. They should give you some squirt bottles to clean out your bag after you empty it. Ask for two or three. And then when you empty the contents, spray warm water up into the bag and kind of swish it around over your stoma to cleanse it. If you are in public and do not have a squirt bottle, empty it into the toilet and carry baby wipes to clean out the tail on the bag so that you can roll it back up easier. I carried one of those little travel cases of baby wipes in my purse. My family loved it because I always had one if they needed it, lol.View Thread
Well, first off, if you are having your entire colon removed, you will not have a colostomy, it will be an ileostomy. I had an ileostomy for 6 months and then had it reversed. It really isn't so bad, once you find the right appliance for your stoma. You need to try to keep an open mind and be willing to experiment a bit to find one that fits you and your stoma. It is going to be really frustrating and it's a very emotional time, but you can get through it. I still haven't gone through and gotten rid of all of my supplies because every time I start to, I end up crying so I stop.
Be prepared to have accidents. Not in the traditional sense because poop isn't coming out of your butt, but your bags will leak sometimes. Get used to sleeping on your back, lol. I have a lot of problems with gas still, and it was one of my biggest problems with the ileostomy. I eat too soon before going to bed, and I would digest and the gas would build up in the bag, and then I'd roll over on it and it'd pop. And there would be poop all over me. Which isn't as bad when you sleep by yourself but my boyfriend sleeps with me and it was always incredibly embarrassing, but he was a good sport about it. I expect that problem can be resolved by paying attention to when and what you eat, and perhaps taking Beano or something.
If you do end up with an ileostomy, I don't know if anyone has spoken to you about what you can expect as far as poop goes. One of the main differences between caring for a colostomy and an ileostomy is the poop. With a colostomy, you have part of your colon, so the excess water is absorbed and you will pass formed stools. With the ileostomy, this water is not absorbed, so you will have liquid stools or soft stools (resembling pudding) forever. The stoma (the part of your intestine that sticks through your skin) is also slightly different- usually a colostomy stoma is larger than an ileostomy stoma, The size depends on how large your intestine is. Mine was between the size of a quarter and a half dollar once the swelling went down. Colostomy stomas also can become clogged because of the formed stool- you have no sphincter or muscle control there to help force it out, so it must be able to come out on its own. So with a colostomy stoma, it may have to be irrigated. Ileostomy stomas do not have to be irrigated. They are more likely to develop irritation around the stoma because you are constantly passing liquid stools. This is why it's so important that your device fits your stoma well.
The nurses will tell you this, but they didn't tell me so I'm passing it along just in case. You'll need to change your bag in the morning. If you choose any other time of day to change it, you'll have more mess because your bowel is the least active in the morning. I always changed mine in the shower. I got a shower chair, and I would get all of my supplies laid out on the counter before I got in the shower. Then I would shower, and I would leave the bag on until I was finished showering. I would let the bag get wet when I'm preparing to remove it, and then I used adhesive remover wipes (you can order them from the pharmacy or the place you get your bags) and removed the bag. I would then place a damp, clean wash cloth over the stoma to help hold in some of the mess until I got the new bag on. This usually was executed flawlessly after I had some practice at it. In the beginning, it is helpful to have someone to help you get the bag on. I didn't want to look at it, much less deal with caring for my stoma, and my mother assisted me a lot with this. But it's better if you can change the bags without clothes on, because that way if there is a mess, you're already in the shower and can just wash it off. So it has to be someone you're comfortable with.
For me, after I had my colon removed, I was in so much less pain than I had been living with for years. You have to start slow, but then it seemed like I could eat whatever I wanted, which was new.View Thread
Right now, I have hydrocodone 10-650 that I take for pain during a flare. I am also on amitriptyline (100mg at bed time) for what my doctor has called irritable pouch syndrome and Celexa (20mg daily) for irritable bowel. The last two aren't specifically for pain, but they control some of the unpleasant sensations that I would otherwise have by blocking those impulses. I also take Bentyl 20mg for spasms/cramping. Again, Bentyl isn't a pain medication but it has helped tremendously.
I had both UC and Crohn's but I had my entire large intestine removed in 2010 so I no longer have UC, just the Crohn's. But I still have some lovely symptoms.
If you don't have any prescription pain medication, it's hard to decide what medication to take for pain. NSAIDs are generally recommended for inflammatory disorders, but they increase GI upset and the risk for GI bleeding, so they are sometimes contraindicated in UC. Tylenol doesn't really do anything for inflammation and it can be hard on your liver, which is often hit hard by other medications you have to take for UC. Is there any chance you could call your doctor and speak with them or a nurse that might be able to recommend something?View Thread
Yes! She will most likely be able to become pregnant without problem. She will need good prenatal care and she will be a high risk pregnancy, and she will most likely have to deliver via cesarian. I've had my entire large intestine removed, I had an ileostomy for six months and then had it reversed. According to my surgeon, my gynecologist, and my GI doc, pregnancy should be very possible when I'm ready (I'm 23 and in nursing school) so I don't know why her situation would be any different. View Thread
You have to give it time and adjust your diet. I was really sick for several months after I had my surgeries. You have to eat bland foods, no fresh veggies or seeds or grain of any kind, really. And I still have bleeding (years later) if I eat any ruffage. The mucosa in the small intestine is more sensitive than the large, so it bleeds easily. Not necessarily something to worry about though, unless it's a lot of bleeding. I get sick just about any time I eat. You just have to find the right medications and diet. And push forward.View Thread