Just had another accident.

New to the forum. Hello everyone!

I'm a 29 yr old male, I was diagnosed with ulcerative proctitis back in 2007. Started with Asacol and then switched to Lialda which I've been on for a while now. Lialda has helped a lot but last year I had a major flare up (stopped taking my meds) and I feel like because of it things got worse for me even when getting back on Lialda. I have been experiencing more frequent bathroom urgencies which have resulted in a few accidents over the past year :( Bloating/intestinal gas is also one of the major problems for me...any gas buildup makes me run to the bathroom thinking it's a BM. I sometimes have a hard time telling whether it's gas that I am passing or if I am about to have a BM...so I just rush to the bathroom. GI doctor attributes this to the inflammation.
If I could just get the urgencies and gas under control things would be better for me. Whenever I leave the house to spend time with friends or with family I am in constant fear that I might have an accident and at times I start to panic when I am not near a restroom (which probably makes things worse). All this makes dating difficult for me as well.
Tonight after dinner I went to walk my dog and all was fine before leaving the house - 20 minutes into the walk I suddenly got the urge...I didn't know if it was gas or a BM so I held it with all my might! Urge got stronger and I knew it was a BM...and there it went! I am tired of it!

For those that get the frequent urges what do you do to help with it. I noticed that whenever I get these unexpected BMs my stool is loose, should I eat more fiber? What about the gas, would fiber create more gas? What is there to do about the intestinal gas?

Thank you all for your time!

I also seemed to have terrible BM urges after dinner when trying to exercise or just take a walk. Maybe you should walk your dog before dinner so you don't have such terrible urges. I know that doesn't really answer your question, but making a small change like that could help prevent an accident when flaring.

Have you tried any diet modification? Going SCD seemed to help me with the gas and urgency.

I can totally relate. Most of my symptoms (bleeding, etc) are gone, but the urgency remains. It's very stressful, and I stress/worry makes it worse. If there are certain times of day (after dinner, morning, etc) that tend to be worse for you, plan around those times to reduce your stress level.

Unfortunately, you made a huge mistake in stopping the meds. Wish I had a dollar for everyone who posted saying they were in remission, stopped meds, and now they are worse off than they were before. Future flares are often harder to treat and what worked before often doesn't work as well or doesn't even work at all. I know that doesn't solve your current problem. I've noticed when this happens to me it is often associated with something I ate earlier not agreeing with my system. It can really sneak up on you. I would follow the other's advice and if you attain remission again make sure you never quit taking your maintenance meds, even if you have felt totally fine for 30 years.

Adventureuc said...
I also seemed to have terrible BM urges after dinner when trying to exercise or just take a walk. Maybe you should walk your dog before dinner so you don't have such terrible urges. I know that doesn't really answer your question, but making a small change like that could help prevent an accident when flaring.

Have you tried any diet modification? Going SCD seemed to help me with the gas and urgency.

Thank you for your comment.
I have not tried the SCD diet. I have heard about it, I will look into it!

iPoop said...
Your doctor is right, the symptoms you are experiencing (sudden urges to go, not sure whether it is poop or fart) can definitely be attributed to inflammation in your rectum/sigmoid colon. The best way to get rid of those symptoms is to better treat your uc inflammation.

What do to about this:

• Are you only on Lialda and how much of it per day? I take 4 tablets of Lialda for a total of 4,800mgs a day. If you are not taking that much, then you should be.
  
• Are you taking any rectal medications? You should be taking either a meslamine-based (a.k.a. 5ASA) suppository (e.g., cansa) or an enema (e.g., Rowasa) as those will help reduce inflammation further.
  
• Stress can make you have to go to the bathroom badly. Know where bathrooms are before you leave. It is good to carry an emergency kit with you. Keep a ziplock bag with a change of underwear, tp, and wipes with you. It is great for peace-of-mind, it lowers stress and helps your mind with what happens in the worst case scenario.
  

Accidents do happen, it is just a part of this horrible disease (I've had a number of accidents myself while driving, at work, and so forth). Prepare yourself the best you can. Explore the treatment options you need to make your symptoms the best you can get them. And most of all don't let uc hold you back. If you need to go somewhere go for it, have your emergency kit, research bathrooms ahead of time, and go when your uc is the most manageable (e.g., mornings are very rough for me but then I am fine for the rest of the day without having to poop).

I was taking Lialda 4 tablets until I saw my new GI doctor a little over a week ago. I switched doctors because I relocated cities after I finished grad school and my previous doctor was now too far. During my first visit with the new GI doc I told him I was taking Lialda 4 tablets/daily and he said it was a lot (knowing my symptoms were pretty much under control) and instructed me to reduce it to 2 tablets daily and give that a try. So I've been taking 2 tablets daily since September 5th. Maybe 2 tablets it's not doing it for me. I was fine before with my dosage...I think I am going back to 4 tablets daily.
I just started Cortifoam two days ago. The cortifoam was given to me prior to leaving my previous GI doctor incase I had a recurrent episode in the meantime during my transitions. I will continue using it and see how that goes for me.
Do you find suppositories work better for you? What is your experience with rectal meds.

I hope this helps.

I do not take immunomodulators, either, due to the potential side effects. My colitis case is "severe," but it is located only in the last 22 cm of my colon. But the cramping was unbelievable, and unbearable.

My doctor prescribed me an anti-spasm medication (hyoscyamine) and I take Immodium. This combination seems to be helping me, at least until I go into remission. I also use Prednisone and mesalamine enemas, and treat discomfort/inflammation with cold ice bags.

rabbitlover said...
I hope this helps.

I do not take immunomodulators, either, due to the potential side effects. My colitis case is "severe," but it is located only in the last 22 cm of my colon. But the cramping was unbelievable, and unbearable.

My doctor prescribed me an anti-spasm medication (hyoscyamine) and I take Immodium. This combination seems to be helping me, at least until I go into remission. I also use Prednisone and mesalamine enemas, and treat discomfort/inflammation with cold ice bags.

Thank you for the feedback!
I actually bought Immodium this weekend and gave it a try. So far it worked well! I went on a date this weekend too and had no urgencies! Of course, I had a light meal during dinner so I am sure that helped too. I will look into hyoscyamine...first time I hear of it.

I'd use the rowasa nightly at first to get your inflammation in check. yeah, then try a taper. some people are able to use them once or twice a week as a maintenance med. It all really depends on how active and aggressive your uc is; you use them as often as your body needs them to keep your uc symptoms in check.

some tips: squeeze all of the air out of each rowasa bottle before using. warm them up to body temp in a pocket, or under an armpit before using. squeeze the bottle slowly, and steadily. too fast and it will be uncomfortable. rowasa stains horribly, and can come up unexpectedly when you are first doing this so be prepared.

Before I went out anywhere I had some coffee. Pooped everything out. More of a last resort solution if the need be. I needed it for exams.

There is an easy solution (which helped me) when it comes to gas: food combination.

Like you I had to rush to the toilet all the time because of gas. 5 minutes of walking was often what I could take at most.

Already the very next day after i begin with food combination I could take a bit longer walk.

Have 3 meals a day (in any order): fruit meal, proteine meal and carbohydrate meal. Never mix them. P&J sandwich is for example forbidden as peanuts have a lot of proteine while the rest is carbohydrates. A green salad with some nuts is okay as leefy greens do not have significant amount of neither proteine nor carbohydrates.

engblom said...
There is an easy solution (which helped me) when it comes to gas: food combination.

Like you I had to rush to the toilet all the time because of gas. 5 minutes of walking was often what I could take at most.

Already the very next day after i begin with food combination I could take a bit longer walk.

Have 3 meals a day (in any order): fruit meal, proteine meal and carbohydrate meal. Never mix them. P&J sandwich is for example forbidden as peanuts have a lot of proteine while the rest is carbohydrates. A green salad with some nuts is okay as leefy greens do not have significant amount of neither proteine nor carbohydrates.

Thanks for the feedback!
I will give this a try!