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Ulcerative Colitis
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Posted 2/8/2017 7:19 PM (GMT 0)
Hey guys. My name is Matt and I am 30 years old. I was originally diagnosed with UC back in 2010 and was told I had a mild case. I developed the symptoms and troubles after quitting smoking for 4 years. I was put on Canasa supp and was very noncompliant and eventually started smoking again. UC went into remission and I was all clear. Well around 2012 I decided to quit smoking again and developed a really bad flare. I had my own insurance by this time(after being on my parents) and I work at a hospital so I had to use a new GI doc "in network". He turned out to be a really good doctor though and performed another scope. He said I was in another flareup and prescribed me Delzicol. I started taking that medicine and my symptoms got worse and worse until I got fed up and started smoking again rolleyes Fast forward to October 2016. I stopped smoking again because I turned 30 and knew I needed to take better care of myself. Two days after quitting I developed quite a bit of blood and mucus (blood dripping in the toilet). I called to make an appointment with my old GI doc and found out he retired. I saw a new one last week who has scheduled me for a colonoscopy for tomorrow. I'm about to start the prep in about 45 minutes ugh. Anyways sorry for this being so long but I have been doing a lot of worrying because of my noncompliance. Have any of you guys just had mucus and quite a bit of blood in the water and on the TP as an only symptom? I've been diagnosed with IBS as well so I have diarrhea with certain trigger foods but the blood and mucus has been constant. I have experienced very little abdominal pain. Thanks everybody.
Posted 2/8/2017 7:43 PM (GMT 0)
Many people have blood and mucus w/o pain or cramping.

If Delzicol did not work, you may be able to get insurance to pay for an alternative mesalamine. Unless you are alergic (only about 5%) good chance one of the others works better.

You may also be able to get benefit form nicotine patch.

if it is still only proctitis, you might control it with mesalamine enemas - but sounds like you would tend to be noncompliant with those. They can be a bore to use.

good luck
Posted 2/8/2017 7:50 PM (GMT 0)
Well I'm committed to being compliant this time. Being an RN I should know better but still. I've since married and want to start a family so being healthy is a must no matter what it takes. Inserting suppositories while you're dating someone was a big buzzkill lol
Posted 2/10/2017 12:39 AM (GMT 0)
Well an update. Had my colonoscopy today and it was as feared. Apparently my whole colon is now involved. The doc was mad at me for stopping and starting medicatons. Can't blame him I guess. I am mad at myself. Anyways he didn't prescribe me anything today. He wants me to see him in the clinic next thursday. Said something about Imuran I think and steroids but doesn't want to start anything until I turn in a stool sample for c diff.
Posted 2/10/2017 8:07 AM (GMT 0)
He didn't give you any intervention now? That stinks.id almost call and ask if you can start the 6mp before your appt? Seems silly to have you wait since 6mp can take time (weeks/month) to get into your system and start working.

As for the compliance part, you can't be too hard on yourself. If it's the best you could do at the time, then you've got to chalk it up to the experience and move on. What can you commit to doing this time around to get healthy? Just think ahead and not what you did or didn't do. Plus, I don't blame you if the medicine wasn't working. Are you able to contact the doc in the future if your medicine isn't working and talk before stopping? Maybe just make that deal with yourself, especially bc depending on the meds you're on (pred for example), can be dangerous if you stop abruptly. You've gotta be in contact with your doc if it's not working.

Good luck and hopefully you can find some relief soon. Colitis throughout your entire colon sounds really painful.
Posted 2/10/2017 3:49 PM (GMT 0)
First and foremost, you need a good open line of communication with your doctor and try not to be afraid to let him/her know what is or isn't working for you. There's a lot of trial and error when treating UC, so it's unfortunately not unusual for your first treatment to not work fully for you. Keep trying new treatments until you find what works for you. It's very individual.

Having pancolitis (full large intestine involvement) is not something to be taken lightly. It means that you can have more severe flares, higher risk of hospitalization during flares, and greater risk of colorectal cancer. You'll likely need immunomodulators (imuran or 6mp) and maybe even biologics (humira or remicade) in the near future.

Find a way to make your meds a part of your daily routine, like take them ever day at the same, exact time. For example, before brushing your teeth in the mornings. It's much, much easier to remember when it's part of your routine.
Posted 2/10/2017 6:02 PM (GMT 0)
Thank you guys. The kind words mean a lot. I called this morning and they called me in 14 days of prednisone so I'll start that today. I'm really sore from the procedure yesterday but trying to press on.
Posted 2/14/2017 12:16 AM (GMT 0)
Just checking in again. I've started the prednisone. He has me on 40 mg once a day. May not be related but now I have a bad cold blah.

Have any of you guys with pancolitis ever used just mesalamine to get out of a flair? I'm so anxious and scared to start the stronger drugs. I really want to ask him if I can swap from the delzicol to something like lialda to see if it will work. He described my pancolitis as moderate and scattered. I have no pain at all now. Only bleeding and mucus. I have a feeling I know my answer and immuno modulators are my next course of action as well as probably mesalamine. What scares me the most are the side effects and the fact that I'm a nurse in an urgent care clinic surrounded by flu,strep, pneumonia and everything else. Can't afford to leave my job for sure although I don't see that being a problem right now because of my minimal symptoms.

Sorry this is so long. Just needing to vent a little lol the denial of the situation is wearing off.
Posted 2/14/2017 12:52 AM (GMT 0)
I am on my first round of everything, diagnosed last month. Apriso and Pred. was not cutting it for me, and my doctor was talking about the next step, but tried me on balsalazide and Uceris first, and that seems to be working for me right now. I have moderate pancolitis. I am sure there are others with much more experience, but it might be worth trying a different rx first.
Posted 2/14/2017 1:09 AM (GMT 0)
We have posters who are elementary teachers and others who work in healthcare yet take immunomodulators. If you've maxed out the mesalamine-based meds then it's time to add immunomodulators.

You can always try a different oral mesalamine to be absolutely sure, but i wouldn't wait anymore than 3 weeks for a different mesalamine to work. Reduce odds of success on another mesalamine I'd wagger.
Posted 2/14/2017 1:57 AM (GMT 0)
"Have any of you guys with pancolitis ever used just mesalamine to get out of a flair?"


gotten out of 4 or 5 flares with no meds at all - it is possible -
Posted 2/14/2017 3:10 AM (GMT 0)

iPoop said...
We have posters who are elementary teachers and others who work in healthcare yet take immunomodulators. If you've maxed out the mesalamine-based meds then it's time to add immunomodulators.

You can always try a different oral mesalamine to be absolutely sure, but i wouldn't wait anymore than 3 weeks for a different mesalamine to work. Reduce odds of success on another mesalamine I'd wagger.

Bad thing about me goes back to my noncompliance. Canasa worked back when I was first diagnosed with proctitis but once I resumed smoking and it went into remission I wasn't on anything. My second doctor had written delzicol that I was supposed to be taking but instead I was self medicating with nicotine. I just quit 3 months ago and had thus newest flair and took the mesalamine for about a month which seemed to make my bleeding and other symproms worse. I guess I can say I didn't give it a fair shot.
Posted 2/14/2017 2:13 PM (GMT 0)
Noncompliance is only making your UC journey much, much harder than it needs to be as even mild cases can become severe cases due to this. It's essential to make your medications a part of your daily routine, like take them each morning before brushing your teeth. It works for many of us.
Posted 2/14/2017 9:15 PM (GMT 0)
John, do you have any advice for taking medications in the morning if you can't eat breakfast? I've got IBS as well so when I eat breakfast it's almost an immediate trip to the bathroom. All of the mesalamine says 30 minutes before meals or an hour after. I guess it would really be ok without food but I'm not sure.
Posted 2/14/2017 10:50 PM (GMT 0)
I take my oral mesalamine with or without food, it really makes no difference to me, personally. The only time you'd need to take oral mesalamine with food is if your stomach felt upset immediately after taking mesalamine. Remember those oral pills have a roughly 24 hour journey from mouth to when their pooped out, so no worries at all if you poop immediately afterwards.

The canasa suppository is best to take before bed, if you have troubles retaining them during the daytime.
Posted 2/17/2017 2:27 AM (GMT 0)
Well another update. Went to see the doc today and he said I do have pancolitis but that it is splotchy. He chalks that up to my self medicating here and there with old supplies of delzicol and steroid suppositories.

He didn't put me on any immunomodulators yet. Instead he's going to have me continue the prednisone for 12 weeks blah. 40 mg for 4 more weeks and then taper from there. Also he's going to put me on a high dose of mesalamine. If this doesn't work I'm going on to humira or something like that but I'm keeping my fingers crossed. I get kind of down about this so if I seem to be rambling I am but it help me to talk about it so thank you to everybody here on the forum.
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