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Ulcerative Colitis
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Posted 10/17/2013 3:18 PM (GMT 0)
Hello everyone.  I am new to this site.  I have Severe Colitis as well as a whole host of other health problems.  I came here to learn from others who have this as well as maybe lend a little help and comfort myself.  I am not new to this disease.  I've had IBS since I was a child and have suffered greatly with Colitis since 2011. 

I now use the bathroom 7+ hours a day straight as in no getting up besides to get something to drink or eat.  So I pretty much have no life obviously and no job.  I have been lax in going to the doctor because the laxatives I took to do the Colonoscopy (I think that is the right way to spell it) took me from three hours to 6 hours in about a month.  My problem started in May of 2011, went to do the procedure in October and by early December, I was up to four hours twice a day.

I finally just started staying in the bathroom instead of leaving at four hours and stayed that way for 6 hours until recently when my problem worsened.  So I went back to the doctor and he has me on Lialda (4 tablets a day). 

In ending this post, I was wondering if anyone out there used the bathroom this much each day.  If so, what advice can you give to me that has made your life better or easier?

Either way, hello to all, and I look forward to hearing from all of you about your individual problems.  May God Bless each of you.

Posted 10/17/2013 3:29 PM (GMT 0)
Yeh, I was that way, I got admitted to hospital and got treatment. And I would strongly recomend you did the same.
Also colitis patients are not recomended to take enema laxatives before a colonoscopy, so thats a bit worrying.

People will suggest certain medications and diets for you to try, but please please see a doctor tomorrow.
Posted 10/17/2013 3:33 PM (GMT 0)
Before I found Lialda and the SCD Diet Lifestyle, I was in the bathroom with great urgency 20+ times a day, for maybe 10 minutes at a times. Sometimes longer. Now (2 years later) I'm in the bathroom once in the morning, then again around 7pm. I'm a totally normal(as much as you can be with UC) participant in everyday life. Sounds like you are in need of medication. Maybe a big burst to at least stunt your system for a sec, while you get back on track. Good luck, and stay tuned for smarter responses tha my own.
Posted 10/17/2013 3:33 PM (GMT 0)
Thanks Laura.  I was unsure of the laxatives as well, and they did indeed do damage to me.  I was already taking laxatives beforehand since I couldn't go without them.  I tried to talk to the doctor about this, but they insisted that time and now this time as well.

Have you taken the Osmoprep Pill before? I don't do well with liquids since I have an awful gag reflex.  If I had to do laxatives, a pill would be SO much better. 

Posted 10/17/2013 3:36 PM (GMT 0)
Thanks Bobpuvel, I'll have to look up the SCD diet.  I have many other health problems that inhibit me from eating much of anything.  I will check it out though. 
Posted 10/17/2013 3:36 PM (GMT 0)
Welcome to the forum...
Posted 10/17/2013 3:48 PM (GMT 0)
It really sounds like you need to see a doctor/GI right away and possibly go to the hospital. Is there blood, mucous, pain when you use the restroom?

When I was at my worst, I was in the bathroom over 20 times a day.
Posted 10/17/2013 3:55 PM (GMT 0)
@MikeSoCal, I did go to the doctor just recently.  They set up a Colonoscopy, but I had to cancel it for a future date because of other health problems that flared up.  I don't use the bathroom constantly, but ALMOST, so by the time I got up, I'd just need to go right back so I learned at least for my particular condition to stay put.

I've had IBS all of my life and have used the bathroom since a little child for 30+ minutes up until about 45 minutes.  That all changed in May of 2011 when everything worsened considerably times ten.  My doctor also told me I don't have IBS now but IBD.  I have as stated above a whole host of other things that I have to deal with as do they when they want to do a surgery. 

I'm a little unsure of taking the laxatives for the procedure again.  I got no benefits from the procedure besides knowing I had for sure Ulcerative Colitis severely, which I'm sure in two years has grown much worse, and going from three hours to now 7+ hours.  I wish there was a less intrusive way for them to check me out.  Oh well.

Posted 10/17/2013 4:05 PM (GMT 0)
I'm sorry you are here........ but welcome. I was filling up toilet bowls full of blood and the Dr's office wanted me to wait for 3 months. I got very detailed with them and they got me in the next day. Def get a 2nd and 3rd opinon if you are not getting better. Good luck!
Posted 10/17/2013 8:29 PM (GMT 0)
Are you currently taking any meds for UC?
Posted 10/18/2013 1:38 PM (GMT 0)
I was diagnosed with an x-ray and later a scope, so they really don't need to keep prodding you about and hurting you.

But you will need meds. probably a dose of steroids to kick start your recovery, you can't just have been diagnosed and sent on your way. that sounds very wrong.

When i was diagnosed, i was on IV steroids not just sent home.
Posted 10/18/2013 1:43 PM (GMT 0)
I am currently on Lialda for UC.  Thank you so much for all of your concern and advice.  Most I've gotten since 2011 for sure. 
Posted 10/18/2013 3:57 PM (GMT 0)
Good luck with feeling better. You should not have to live your life like this. You need to get proper medical treatment and advice. Remember it's your life and it's time to take control of it. It's always hard with doctors but they need to listen to you and prescribe the correct treatment. If they do not find another one. No one will do this for you. I'm knew to uc but I read too often about people suffering for years without treatment and this is not acceptable.
Feel better help is on the way
Posted 10/18/2013 4:09 PM (GMT 0)
Thank you deeppowder.
Posted 10/18/2013 5:07 PM (GMT 0)
Welcome.

I do want to question those who are telling you that you shouldn't have been given laxatives before your colonoscopy. Even if you're pooping a lot, doctors will still have you do a bowel prep to ensure that your colon is fully cleaned out. It sounds like this is what happened.

As for meds, the Lialda alone might not be enough to treat you. I'd start with mesalamine enemas. Do your bowels quiet at all during the night?

The best thing you can do is to learn a lot about the different treatment options for UC so that you can have good discussions with your doctor about what you would like to try.
Posted 10/21/2013 1:42 PM (GMT 0)
@fruitgirl, my bowels do basically quit after about 7 to 8 hours on the toilet.  I however feel horrible and like I might need to go throughout the rest of the day.  If I can get in here at 8 or 9 a.m., then I get to have a little bit of the day after I am done.

Usually however, I am so wiped out that I have to sleep a few hours.  So yeah, I basically have no life.  But I do get to sleep at night without using the bathroom. 

Posted 10/21/2013 1:55 PM (GMT 0)
I cant believe i am writing this but i know if i were in your position i would get on prednisone asap! What about rectal meds. You are one of the mist affected i have read about here and if i were you, i would be screaming for relief! Get in there! Even if you have to wear a diaper. You can make it worse without giving that colon meds to heal! I wish you relief soon.

I hate pred but if i cant leave the house i would buckle up and take it or another big gun!
Posted 10/21/2013 2:59 PM (GMT 0)
Hello & welcome.

I agree with imjustagirl. If you're on the toilet 7hours a day, going to the hospital to get IV medicine may be the best solution to get you back to being able to function. I hope the Lialda alone is enough to get you feeling back on track, but you have to remember, UC is an illness of flare up and remission, we have to be realistic in understanding that over time, there is a good chance we will flare up again. You need to have a relationship with a GI who can help you work through these periods of flare up. If i were on the toilet 7hours a day, I would go in to see a GI TODAY or to the ER.
Posted 10/21/2013 4:45 PM (GMT 0)
Welcome to Healingwell.

If you're going 7+ you need a change of meds. When is the last time you saw a GI?
Posted 10/21/2013 5:48 PM (GMT 0)
You need to get to a GI or ER. Your symptoms sound very severe and I don't see why you can't be started on medication without going through another scope. At this point you should definitely be on prednisone or similar because even the max dose of Lialda at 4 is not going to give you much relief if you are stuck in the bathroom 7 hours a day. I was going around 20 times a day and as soon as I started prednisone it's been down to about 5... much more manageable. You might even benefit from mesalamine enemas as well, those used to work like a charm.
Posted 10/21/2013 6:16 PM (GMT 0)
I actually have a prescription for predinisone (sorry if I spelled that wrong).  It is for gout.  I have several ailments aside from UC.  This is one reason why it is so hard to go to the doctor.  I can't drive (seizures) and therefore have to be taken by someone.  I was going to go to get a colonoscopy in late October, but my heart problems reared their ugly head and now I can't even walk to the bathroom with about just falling to the floor from over doing my heart.

I also have to sleep sitting straight up because if I lie down falt, I will wake up with an hour or so with my heart pounding out of my chest, cold sweat, and not able to breath or barely move my arms or legs.  This problem with my heart comes and goes in severity.  I am afraid to be put under for any length of time when my heart is like it is even though I know that the colonoscopy procedure uses very light sedation.

So that is where I am at.  I have several other problems that doctors have to deal with, but my heart problem is the major reason why I'm not going tomorrow for the procedure.

Posted 10/22/2013 7:46 AM (GMT 0)
I had my colonoscopy without any sedative, that way I could get up and walk out afterwards, I was advised by the NHS against sedatives as they said it doesn't stop it hurting and takes longer to recover (sure, it was hideous but i was speaking with the specialist half an hour after it began). And i was told by the nurse, who went to check and UC patients don't get laxitives. They said they'll go as far as they can with the cmera instead. God bless the NHS.

But I doubt you need one, it's obvious you're flaring.

I'm sorry but I'm getting rather angry at your doctors. I can also call my specialists whenever I need and they can fit me in or give me advice over the phone, so perhaps call them and explain everything.

You'll feel a whole lot more in control once you've got a treatment plan.
Posted 10/22/2013 3:33 PM (GMT 0)
Thanks Laura. I'm not sure my doctor is the listening type as in what he thinks I need. He did listen to me in regards to how I feel, but the laxatives were non-negotiable at least in his mind.
Posted 10/22/2013 3:48 PM (GMT 0)
His name is Saddlewidch (not spelled right) in Chattanooga off of McCallie Ave. which is down the road from UTC. I went to one of the two in Rome, GA and he was more surprised with how I got to see him in less than 6 months than actually treating me or listening to me.

He sent me home with Pentasa I belive and actually told me he wasn't worried about my problem because I could still go. However, I had told him that I couldn't go and that I had strained and strained for days to go and that it felt as though my muscles (down below) weren't working anymore to force stuff out.

Sorry for being gross. But this is what I told him. This was in 2011 of May when my problem started. I was put off by his callous behavior and came up with laxatives on my own and didn't seek help until October of 2011. That is when I took my last Colonoscopy. I went from three hours to 6+ hours almost overnight because of those harsh laxatives on top of the laxatives I had already taken a few days before.

However, my problem worsened and I had extreme pain throughout abdomen, back, etc. area and felt like something was broken inside. Furthermore, I went from my normal 6 hours to 7+ hours and so I conceded to going back to the doctor. So that is where I am at with my current illness in regards to my colon and bowels.

Sorry to be so lengthy and descriptive.
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