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Ulcerative Colitis
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Posted 11/2/2011 3:21 PM (GMT 0)
Hello,

I've been reading this forum for a while now and find everyone to be so kind and knowlegeable that I decided to post.

I'm a 25 year old male diagnosed with pancolitis in the spring of 2007. I was put on 6 asacol a day as well as rowasa nightly and canasa in the mornings. Those meds got me under control pretty quickly and for the better part of the last 4 years I have been doing very well. I really only had flare ups in the spring and fall and only when I tried to tinker with my medicines.

I started another flare about a month ago, I was on my typical maintenance dose of 3 asacol HD, the rowasa nightly and the canasa in the morning. It wasn't terribe but was unpleasant, I was going to the bathroom about 5 times per day, had urgency at other times though, had diarhea and a bit of blood as well as no appetite. The doctor told me to up the asacol to 6 daily and do rowasa enemas morning and night. Over the next 2 weeks I did slowly seem to imporve, the urgency decreased some and the frequency of bathroom trips went down a bit. However, as time went on each trip to the bathroom became more painful and i developed difficulty holding the enemas in for even a short time (never had that before). In the last week nothing has improved and it feels like it is actually starting to worsen again. It is very painful when going to the bathroom, I even threw up once. I've also lost 13 lbs in 3 weeks which can't be good. I went to the doctor on Monday morning and he recomended switching to Cortenemas two times a day and upping the asacol to 7 per day as opposed to 6. He said i should feel some relief in 2 or 3 days. Well today is day 2, I'm not so sure I am feeling any relief, it feels a bit different but almost feels if it is getting worse. I have increasing urgency and have much less energy and it seems a slight bit more painful.

So does anyone have any advice on where to go next. Sorry for the long post : )

Posted 11/2/2011 3:30 PM (GMT 0)
It sounds like you *may* need a course of oral pred to get this calmed down. However, before you do that, are you on a probiotic supplement? And are you taking the max dose of the Asacol HD? I'm not sure what the max dose on that is. I'd probably give the cortenemas a bit longer to help things, though, before trying oral pred.
Posted 11/2/2011 3:39 PM (GMT 0)
I agree with fruitgirl but you could also ask your GI if you could increase to the max amount of Asacol 4800mg. Have yout ried any other medications besides Asacol? Something else may work better for you but first, I'd try increasing the dose if the GI gives you the OK to do so and keep going with the cort enemas. Some people feel rowasa is more effective, you may want to try Rowasa in the morning and cortenema at night and see how you do. It would be great if you could get through this without having to resort to oral pred...
Posted 11/2/2011 3:51 PM (GMT 0)

I've been on 4800mg of Asacol for the past few weeks and the dr actually just increased me to 5400mg.

I've been on Rowasa 2x a day for the past few weeks and have not really seen much improvement, I think that is why the doctor wanted me to try the cortenemas 2x a day. Do a lot of people feel that Rowasa in the morning and Cortenemas at night is a better treatment regimen than Cortenemas 2x daily. I definately want to avoid oral steroids, but this is really weighing on me now and I just want it gone.

Finally, I was on probiotics but I found they were giving me gas pains during this flare so I stopped taking them. Anyone have any recomendations on which type to take?

Thanks so much for help!

Posted 11/2/2011 8:32 PM (GMT 0)
My husband just went through this...

 

He used 2 hydrocortiosne enemas a day for almost 2 weeks and then changed to Rowasa at night hydrocortisone in the am for several days and then to just Rowasa at night.

 

I think to get the flare under control using 2 hydrocortisone enemas a day is best initally

 

make sure you allow enough time to let the morning enema work for an hour before getting up.

 

VSL#3 is the best probiotic for UC.

 

Hope this helps! turn

Posted 11/2/2011 9:41 PM (GMT 0)
I have heard a lot of good feedback on VSL#3 (I tried it without result), other members here use other probiotics that are less expensive with good results as well. I haven't found anything OTC that has really helped get my UC in check. I have tried diet and supplements of all sorts. The one supplement that I do recommend taking is vitamin D. Many of us are deficient. Have you altered your diet at all? Are you able to retain the enemas even though it it uncomfortable? If you're not retaining them, they may not be working to their fullest. In that case, I would ask the GI for foam enemas, they are easier to retain. Suppositories are easier too but they don't treat as much area and since you have pancolitis, you may need somethig that treats higher.

I don't want to be negative but my GI did tell me that the majority of patients do not see long-term success with Asacol/mesalamine. I hope it's not the case for you.
Posted 11/3/2011 1:40 PM (GMT 0)
I have altered my diet during flare-ups, however when I am in remision I seem to be able to eat anything. Right now I am eating a very bland diet, rice, chicken, turkey, pasta, potatoes, etc. I am for the first time with UC having a very difficult time eating despite being hungry. I am able to retain the enema for most of the night, I seem to wake up at about 5am to pee and then once I stand up to go do that, I feel the urge to release the enema. In the morning I can keep it in as long as I am laying down, once I stand up I cant keep it in too long. I am finding that with this flare I am having a lot of pain when going to the bathroom. The urges to go are slowly getting better, but if anything the pain is getting worse. Today is my third day on the cortenemas and so far I'm not sure I am feeling much relief. I am also very very tired, which is really unusual for me.

I've seen success in getting rid of every past flare with asacol/mesalimine but not this one, i am incredibly frustrated and just not sure where to turn next.

Thanks again everyone this forum is great, its nice to know that there are others out there who really understand what an emotional rollercoaster this really can be

Posted 11/3/2011 3:39 PM (GMT 0)
I would say give it time to work, the last time I was on Rowasa my Dr. told me it would take three weeks to work and it did. I am not sure how you keep it during the day. I had trouble keeping it in a night. It was a horrible feeling .

Stick to a basic diet it will get better soon
Posted 11/3/2011 10:34 PM (GMT 0)
Steve1986,

Welcome to the forum Steve.

So glad you decide to chime in.

Yes, UC is some roller-coaster  ride alright.


I am for the first time with UC having a very difficult time eating despite being hungry.

What do you mean by that, i.e. are you throwing up after you eat, are you nauseaus, or ??

Is it possible you are having a reaction to the meds?

The exhaustion is certainly a part of UC, but it could also be a reaction to the meds.

I agree with NSSG, what about your vitamin d levels and diet modification?

Posted 11/4/2011 2:15 AM (GMT 0)
     Hi Steve.  When I suffered with ulcerative proctitis, my doctor switched me from Asacol to Colazal and that helped for a time.  Of course, I always had to take prednisone along with it every time I suffered a flare.

     I do have a friend who is having wonderful results with the VSL#3 probiotic. 

     I know what you mean by not being able to hold in the enemas.  That was my problem while flaring.  If only I could hold them in for a bit, maybe they would help.  When first diagnosed, back in 98, my GI doctor did put me on Rowasa and it did do a good job.   But, after 2003, I started flaring more frequently and place on the cort enemas, which, by that time, didn't do much.

     I wish you luck.

Posted 11/15/2011 4:42 PM (GMT 0)
Thanks for all the advice it sure helps to talk with people who go through this too, an update on what is happening with me in the past few weeks. I have been taking two hydrocortisone enemas per day along with 7 Asacol HD per day and began to feel some relief after a week or so on the enemas. The urgency decreased and my bms became more formed and less frequent (although still very painful, i guess due to inflamation towards the bottom of my colon). I also started to feel more like myself, got back my appetite etc.

 It seemed like everything was progressing along very nicely until yesterday morning. I was unable to hold in the enema and began feeling a lot of pressure, like i needed to go the bathroom but nothing was really there (tenesmus i guess). I went to the bathroom several times yesterday with no luck but some gas and tiny pieces. By the end of the day everything was so irritated and the pressure was really uncomfortable. I couldn't really keep the enemas in last night and this morning for more than a few hours ( I usually can keep them in for a while). Today it feels a bit better, although there is still some pressure, but it is very frustrating. Does anyone have any advice, is there another rectal med I can take to relieve these symptoms and finally get rid of this flare. I know that inflamation in the lower rectum is the most stubborn. I have been on the cortenemas for 2 weeks now, is it possible they aren't treating the very bottom?

Thanks for all the help!

Posted 11/15/2011 4:52 PM (GMT 0)
Hello, and Welcome...
I found great relief with aloe vera stomach formula and l-glutamine powder... I didn't see a signature with all the supplements that you are currently taking or have tried. I fully believe that supplements help a lot when you give them a chance.
Good Luck!
Posted 11/15/2011 5:00 PM (GMT 0)
I think you are feeling pronounced inflamation that is so constricting your colon it is blocking stool and giving the feeling of tenesmus. The best thing agains inflamation is steroids - both oral and rectal. If you think the enemas are not "treating the very bottom", possibly a suppository. This may be a good time for a 30day course/taper of oral Pred.
Posted 11/15/2011 7:12 PM (GMT 0)
STEVE1986,  

I have found cortenemas to be very effective, but can irritate the lower end like you mentioned.  Cortifoam is also great to treat proctitis its easy to retain because its a foam so its great for using during the day.

I have found vit e oil to help the irritation I add the oil (400iu or higher)  many capsules into my enema bottle and lube the tip as well.   Rub the oil around the rectum to help the area heal.

Are you currently taking any probiotics to put the good bacteria back into your colon that is lost with all the BM"s.  I alternate between 2, the bio-k plus is an excellent one. 

Posted 11/15/2011 7:42 PM (GMT 0)

Yea I was thinking they may be irritating the lower end. I just spoke with the doctor and he said he has no idea, but I can try switching to rowasa enemas in the morning to see if that helps. I was also thinking about maybe switching off between canasa suppositories every other morning and cortenemas every other morning. Maybe its the applicator from the enemas that is doing the irritation. (shrugs shoulders)

 I had been taking probiotics but i stopped because I found that they caused me gas pains. I am seeing a nutrtitionist next week, so hopefully she will help me find some good suppliments to add on.

Thanks for the advice, I am at a loss right now and just would love to figure out how to get this competely gone

Posted 11/15/2011 8:07 PM (GMT 0)
Definitely switch to Rowasa. Do the supps every morning and the Rowasa nightly.

Regarding probiotics, I would suggest you take them on an empty stomach at night.

Hope you feel better soon.

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