Ulcerative Colitis Filter: Tell me about your poop.
June 25, 2013 7:54 PM Subscribe
Am I normal?
I've found that with UC, there really is no normal when it comes to the bathroom, and sorry if this is TMI but I'm interested in what others with UC have experienced in terms of bowel movements.
I'm currently on 2400 mg of Asacol daily with a Canasa when I feel like it, I mostly use that when I notice excessive mucous. Sometimes my poop is normal and well-formed at first, and then in the same sitting it turns to the consistency of soft-serve ice cream. Sometimes it takes 30 minutes for me to finish. There's only blood if I go a lot in one day and I feel like that's because my skin becomes sensitive down there. I don't really feel like I'm flaring, but I'm wondering if this is just how it goes for UC. I've had it for 10 years, but I would say in the past 5 it's been like this on and off. I was scoped last year and the doctor said it was still moderate. Tell me about your experiences, please!
I've found that with UC, there really is no normal when it comes to the bathroom, and sorry if this is TMI but I'm interested in what others with UC have experienced in terms of bowel movements.
I'm currently on 2400 mg of Asacol daily with a Canasa when I feel like it, I mostly use that when I notice excessive mucous. Sometimes my poop is normal and well-formed at first, and then in the same sitting it turns to the consistency of soft-serve ice cream. Sometimes it takes 30 minutes for me to finish. There's only blood if I go a lot in one day and I feel like that's because my skin becomes sensitive down there. I don't really feel like I'm flaring, but I'm wondering if this is just how it goes for UC. I've had it for 10 years, but I would say in the past 5 it's been like this on and off. I was scoped last year and the doctor said it was still moderate. Tell me about your experiences, please!
You had inflammation when you were scoped last year? Did your GI change your medication? I always thought the goal was to eliminate all inflammation (and blood). That's the goal for me and my GI anyway.
I take 150mg Imuran, 4800mg Lialda, and 2 bottles of Rowasa per day. It's what's necessary to keep my colon free from inflammation, and my poops aren't anything special, which I consider a good thing.
I go once or twice a day in the morning. They're fairly formed, though it's different because of the Rowasa. They last only a couple minutes, never close to 30. Do you get enough fiber? I take psyllium husk capsules every day to help my stools stay formed and to stay regular. I've never really worried about the consistency unless it's like diarrhea. Mine have changed consistency similar to yours (not always though), but I am usually just concerned about blood and mucous. I haven't had any blood or mucous in my poop since I went on this medication regimen, which was several months ago.
For the sensitivity down there, you could try getting softer TP if you're willing to pay for it. If you really want to splurge, you can get baby wipes for the especially bad days. They're great for prep days too.
I second the HealingWell recommendation.
posted by aloysius on the mixing boards at 8:40 PM on June 25, 2013 [1 favorite]
I take 150mg Imuran, 4800mg Lialda, and 2 bottles of Rowasa per day. It's what's necessary to keep my colon free from inflammation, and my poops aren't anything special, which I consider a good thing.
I go once or twice a day in the morning. They're fairly formed, though it's different because of the Rowasa. They last only a couple minutes, never close to 30. Do you get enough fiber? I take psyllium husk capsules every day to help my stools stay formed and to stay regular. I've never really worried about the consistency unless it's like diarrhea. Mine have changed consistency similar to yours (not always though), but I am usually just concerned about blood and mucous. I haven't had any blood or mucous in my poop since I went on this medication regimen, which was several months ago.
For the sensitivity down there, you could try getting softer TP if you're willing to pay for it. If you really want to splurge, you can get baby wipes for the especially bad days. They're great for prep days too.
I second the HealingWell recommendation.
posted by aloysius on the mixing boards at 8:40 PM on June 25, 2013 [1 favorite]
I have microscopic (lymphocytic) colitis, not ulcerative, but for what it's worth: I am all over the map, personally. I don't think there is a "normal" with colitis. It never takes me long, but every other variable you can imagine is different.
For my colitis, it didn't have to be that way all the time. Dietary changes, appropriate experiments with medications, and less stress have had a noticeable impact. But I'm sure you know how it goes with autoimmune diseases, they can vary so much, and seem very inexplicable. Keep persevering, OP, remember that there are always good days as well as bad days.
posted by smoke at 6:30 AM on June 26, 2013
For my colitis, it didn't have to be that way all the time. Dietary changes, appropriate experiments with medications, and less stress have had a noticeable impact. But I'm sure you know how it goes with autoimmune diseases, they can vary so much, and seem very inexplicable. Keep persevering, OP, remember that there are always good days as well as bad days.
posted by smoke at 6:30 AM on June 26, 2013
Err, is not well formed poop a symptom of UC? I have had this off and on all my life and never really worried about it. I figure the consistency of my stool will directly depend on the consistency of the food I eat. For example, how is my body gonna form firm stool out of soup?
There is no harm in adding a bit more soluble and insoluble fiber to your diet to help with stool formation, if you really are worried about this. Soluble fiber will cause the stool to sit in the colon and dry out a bit, and insoluble fiber is used by the body to pass feces.
For the other issue, have you tried squatting while defecating? I find this dramatically reduces issues I have with tearing around the anus / hemorrhoids / etc.
posted by jalitt at 9:24 AM on June 26, 2013
There is no harm in adding a bit more soluble and insoluble fiber to your diet to help with stool formation, if you really are worried about this. Soluble fiber will cause the stool to sit in the colon and dry out a bit, and insoluble fiber is used by the body to pass feces.
For the other issue, have you tried squatting while defecating? I find this dramatically reduces issues I have with tearing around the anus / hemorrhoids / etc.
posted by jalitt at 9:24 AM on June 26, 2013
+1 to Janey47.
You will never find anything better than HealingWell UC forums (and if you do, let us know).
posted by zaxour at 3:44 PM on June 26, 2013 [1 favorite]
You will never find anything better than HealingWell UC forums (and if you do, let us know).
posted by zaxour at 3:44 PM on June 26, 2013 [1 favorite]
OK, I'll nth the HealingWell recommendation. It's certainly the most active community of UC patients on the internet and as a result you at least get a lot of responses, though some may be of questionable quality.
The fact that you were scoped and told your disease is "moderate" is troubling to me. Does that mean that your doctor saw inflammation throughout a "moderate" amount of bowel? Does it mean he saw moderate inflammation? Moderate inflammation means you are flaring. Even if your symptoms are tolerable (and they sound pretty tolerable), having active inflammation in your colon puts you at a very elevated risk for developing colorectal cancers. It can also increase the risk of developing extraintestinal issues like liver disease and arthritis.
2400 mg of Asacol and Canasa when you feel like it is an extremely mild treatment regimen. That's half the maximum dose of Asacol. Your doctor should be adjusting your treatment regimen until your scope is clear and free of inflammation. You have a lot of wiggle room to play around with treatments right now before getting anywhere near the drugs that tend to make people uncomfortable. For example, Rowasa, which is a mesalamine enema instead of a suppository, is much more effective for left sided disease. Sticking to a maintenance schedule of rectal meds, instead of adding them when you start to notice symptoms, will help you achieve and maintain a true remission.
posted by telegraph at 4:49 PM on June 26, 2013 [1 favorite]
The fact that you were scoped and told your disease is "moderate" is troubling to me. Does that mean that your doctor saw inflammation throughout a "moderate" amount of bowel? Does it mean he saw moderate inflammation? Moderate inflammation means you are flaring. Even if your symptoms are tolerable (and they sound pretty tolerable), having active inflammation in your colon puts you at a very elevated risk for developing colorectal cancers. It can also increase the risk of developing extraintestinal issues like liver disease and arthritis.
2400 mg of Asacol and Canasa when you feel like it is an extremely mild treatment regimen. That's half the maximum dose of Asacol. Your doctor should be adjusting your treatment regimen until your scope is clear and free of inflammation. You have a lot of wiggle room to play around with treatments right now before getting anywhere near the drugs that tend to make people uncomfortable. For example, Rowasa, which is a mesalamine enema instead of a suppository, is much more effective for left sided disease. Sticking to a maintenance schedule of rectal meds, instead of adding them when you start to notice symptoms, will help you achieve and maintain a true remission.
posted by telegraph at 4:49 PM on June 26, 2013 [1 favorite]
This thread is closed to new comments.
If you don't find what you're looking for here, or even if you do, give HealingWell.com a try. I appreciate what I've learned there and oh boy you better believe there is no such thing as TMI there! :-)
posted by janey47 at 8:10 PM on June 25, 2013 [1 favorite]