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Ulcerative Colitis is my new daily nightmare

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Ulcerative Colitis
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Posted 1/12/2013 4:22 AM (GMT 0)

I was diagnosed with ulcerative colitis in May 2012. I started Colazal 3x a day and the lovely, nightly enemas. At first, they seemed to work well; however, I began a serious flare up that has been going on since the end of November 2012. I have been experiencing all of the following: severe abdominal cramping, bloody mucous stools, diarrhea, unfortunate soiled accidents, uncontrollable bathroom breaks that can lead up to 11 times in 3 hours. My GI doctor performed another colonoscopy on me along with a EGD. He did notice that I am also borderline Celiac. So, I am now on a gluten free diet. I've been on it for about 3 weeks now. I have noticed that the diarrhea has subsided a little, but no real significance yet. The bloody mucous stools are still continuing. However, I have noticed that switching to a gluten free diet that I have not had one headache. I use to get about 2 bad headaches a week, and thankfully, they have subsided.

 

Having colitis has really put a damper on my life. I have a 1 1/2 year old son that is the love of my life and he is a very active sweet boy. He is nonstop 24/7. It can be quite difficult to juggle working full time and taking care of my family after work due to the fatigue I experience. Not to mention trying to see any friends.

 

I haven't tried any other drug therapies yet, but I am beginning to realize that the medication that I am currently on is no longer working. It seems as if my body has decided to reject it now especially the enemas. My flares seem worse after I perform a nightly enema. Researching all the drugs out there for colitis is mind boggling. I really would prefer to not take steriods, but I am beginning to wonder if this should be my next step... Has anyone tried a steriod enema? I am open to suggetions, advice, and anything else anyone would like to offer and share with me.   confused

 

As of now, I am on a gluten free diet. I am taking Colazal (3x a day) with a nightly mesalamine enema, starting taking a Probiotic daily, take an occasional spastic colon med when needed, and Imodium if it is a must. I haven't tried anything else yet. eyes I have mild to moderate colitis.

 

Posted 1/12/2013 5:45 AM (GMT 0)
Welcome!!!!

Im very anti-enema so I cant say much but others will share soon. Thats the worst thing about UC. Takes all the precious time of life away. What does your GI say about next steps?
Posted 1/12/2013 6:10 AM (GMT 0)
Hey Ash, sorry to hear about your suffering. I'd just say that prednisone (steroid) is sometimes a necessary evil. I've had this disease for ten years (since I was 18), and most flare-ups needed prednisone to kick-start healing for me. It has very unpleasant side effects at times, but given the choice right now you need something to start helping you NOW! Then you can work on your maintenance medicine regimen, and consider altering it to something a bit stronger if necessary.

There are steroid enemas, prednisone tablets taken orally, and also entocort... which is an oral steroid that is directed more directly at the colon rather than being so systemic like prednisone. I think there are more options too. I've never been hospitalized, but that is an option and then they will do IV steroids I believe. I think there are at least one or two other ways to get steroids... I'm thinking in an enema version... but someone else will have to tell you that.
Posted 1/12/2013 6:12 AM (GMT 0)
I should add that entorcort and steroid enemas have not worked well for me, but prednisone has.
Posted 1/12/2013 6:31 AM (GMT 0)
I actually have more trouble when on enemas. I have tried many different kinds and they always make me have to go so urgently I can't make it to the bathroom. The only accidents I have had except two have been while using enemas. I like the Canasa suppositories.
Posted 1/12/2013 1:05 PM (GMT 0)
Thanks guys for some insight. Madcat, I have an appt. to meet with my GI next week, so I plan to discuss new drug therapies for me. I'm also considering to try to find a GI specialist that specializes in IBD. Thoreau, what bad side effects do you experience with steroids? I dread taking them, but I know at this point, I might need to so I can get some relief and allow my colon and rectal area heal. Teddtlove, I'm noticing the urgency is occurring more now with the enemas. It really is frustrating to buy expensive medicine and then realize it isn't helping you. Thanks again everyone. It's great to be able to communicate with people that know what you are going through.
Posted 1/12/2013 1:25 PM (GMT 0)
Since your on Colazal, I'm assuming you have left sided UC? Before going on oral pred, I would highly recommend the steroid enemas first. There almost no side effects to these unless used long term (6 months - a year). I've always had great success with steroid E's.
Posted 1/12/2013 1:27 PM (GMT 0)
When my colitis was mild-moderate a course of prednisone put me right into remission. Maybe you have an allergy to the mesalamine meds that they are making you worse. I will say, it takes some trial and error to find the right medication. It is frustrating and I understand the whole job and family. I have 2 kids and a full time job. I love playing with my kids and sometimes they don't understand why mom is so tired. I went through a 3 month flare where I couldn't work. I lost about 30#, my hair fell out (not all of it, but A LOT of it), and I really couldn't drag myself out of bed. It makes you feel like a bad mom, wife, employee. I think the mental issues that come with this disease are the worst part of it. After 20 years of dealing with it, you learn to listen to your body. So, listen to your body and if the enemas aren't working, it is time to move on. But don't be afraid of the prednisone.....it was a life saver for me.
Posted 1/12/2013 3:12 PM (GMT 0)
Prednisone at different times can make you hyper, bi-polar, angry, jittery, starving etc... I have stretch marks all over my back from the first time I went on it, gained 30ish pounds, then dropped it very fast when I was off the drug.

In regards to the enemas... I get SICKER from rowasa type enemas. My frequency increases, the stools are looser, and I feel terrible... like I have the flu.
Posted 1/12/2013 7:18 PM (GMT 0)
You could also try eliminating lactose from your diet.
The 3 diet restrictions that seem to turn up in many books on the subject are lactose, gluten and sugar.

IMO you should try the steroid enema before going on Pred.
Less dangerous.
I like slippery elm and use it every day to soothe my digestive tract.
You can get a lot of tips from reading the 11th post under the Ulcerative Colitis Resources tab. InSoFla offers many possible alternatives to "hard-core" drugs.
I benefited greatly by trying some of them.

IMO, doctors are too willing to prescribe drugs with very harmful side effects.
Best of luck :-)
Posted 1/12/2013 7:57 PM (GMT 0)
ItsAlwaysSomething... Have you tried LDN? If so, what were your results?

I agree with the diet suggestions. Milk products and refined sugars both bother me. Never have eliminated gluten. Intuitively feel it's not my issue.
Posted 1/12/2013 10:04 PM (GMT 0)
I know a lot of people hate prednisone but it did put me pretty much into remission. I am just about off of it(2.5 mg). Sure I had some issues but nothing that made it not worth getting better. I was hyper(did a lot of house work), gained all my weight back + a little more, was moody (but not as moody as my wife is once a month :0), My face got pretty fat but it is slowly getting back to normal. I am on asacol right now and the 2.5 mg of Pred and I am only going 1 or 2 times a day with no blood or mucus. I am starting to feel more confident about totally getting off the Pred next week.
Posted 1/13/2013 12:23 AM (GMT 0)
Hi Thoreau-
Yes, I tried transdermal LDN between January and November.
Took several "breaks" because I had trouble with sleeplessness and unpleasant dreams. Woke up feeling depressed which is not "me".
I don't know if it helped with the UC or if the improvement I've seen is a combination of all of the changes I've incorporated since the beginning of the year.

I tried using it the other night and rubbed some into the backs of my hands. Woke in the middle of the night and my hands hurt like he--. Felt like major arthritis. Got up and washed it off.

Might try it again starting with a tiny dose. I have a whole month's worth of syringes and hate to waste them.

I know that InSoFla takes "breaks" from using it and has tried at least 2 forms of LDN...transdermal and troches (sp?)
Posted 1/13/2013 12:43 AM (GMT 0)
hey ash - sorry you're here :-(

please stay with the gf - i'll assume you're being strict, but just in case you're not ......... the longer you are off, the better i suspect you will feel - it takes me anywhere from 30-90 days to get the gluten out of my system -

like others have said, a steroid would probably benefit you also - oral or butt, they should give you and your body a much needed break -

and the other thing that was mentioned that i would agree with would be to reduce or eliminate dairy for a bit -

i would suggest not doing too much more - just eat healthy food, get as much rest as you possibly can, stay hydrated, and know that it will get better -
Posted 1/13/2013 12:49 AM (GMT 0)
Sorry you are having to learn about managing UC.
Regarding accidents...one thing that it took me a while to learn (because there was no internet!) is that eating stimulates your bowels, and this is especially so when you are flaring. So eating less often might help with the urgency and accidents. Also, doses of immodium can calm your gut, ask your doc about it.

You might try steroids/prednisone once, see if it works and if you can tolerate the side effects. After decades of dealing with UC, I happily turned to Remicade and it is what I needed.
Posted 1/13/2013 3:49 AM (GMT 0)
Each post I have read has been very insightful, so thank you everyone. ItsAlwaysSomething, I will have to look into slippery elm. I have not eliminated dairy but I have lessened my intake. For example, I have started drinking Almond milk instead of cow's milk. In reply to all the steroid comments, I am dreading having to take this and I plan for it to be my last resort option. If that is what I need to intake to get to remission, so be it. I will ask for the steroid enema trial first. Soystud, I'm sorry I'm here too. And thanks for your message. Peety, I agree with you too. I realized that drinking hot tea during a flare is not a good idea...I recently turned 30, and right now I feel about 15 years older. I use to work out often and now I can't find the energy to do it anymore. I am looking forward to finding the right med regimen for me and going into remission. Hopefully, by next weekend, I will be starting new medications. I am open to any holistic approaches as well.
Posted 1/17/2013 3:26 AM (GMT 0)
Hey guys! My GI doc started me on Cortenema for 1 month to help my inflammation and to hopefully help me to heal and go into remission. I had my first dose last night and I am so very thankful to say that I had a normal bathroom break today! I actually did a happy dance afterwards. yeah
I am a little nervous due to the side effects, but my doctor assured me that being on it for only a month is not long enough for me to start experiencing any true side effects. Do y'all agree with this? Has anyone had any discomforting side effects with the rectal enemas? I hear the oral meds are 10x worse. I am still taking Colazal. We thought about switching to Asacol, but Asacol price is so much higher. Why are chronic medications out the wazoo?! This is a topic that gets me heated with pharmaceutical companies and insurance companies. smhair
Posted 1/17/2013 1:51 PM (GMT 0)
Glad to hear the Cortenema is working for you. I know that steroid doesn't go as far into your colon as the oral one does, so I guess it mostly depends on how far up the pipe your flare is.

I've been on oral Prednisone for a little over a week now and have had no side effects that I can discern. It cut me down from around 16-20 bms a day to about 8 so far. The blood is gone as of today, and stools are getting more formed and a lot less runny. Prednisone seems to work quite well for me in this flare.
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