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Ulcerative Colitis
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Posted 2/20/2014 3:29 PM (GMT 0)
Hello everybody! I was diagnosed with ulcerative colitis in july 2013, I ended up in the ER after having continuous diarrhea for 2 weeks then it went away and came back.. then I started bleeding and I ended up going to the hospital. They diagnosed UC after a Colonoscopy and put me on steroids until the bleeding stop and i was released. Upon release they had me on Prednisone 40mg (taper 5mg/week) and Apriso, four pills a day and hydrocortisone enemas 1x day for 7 days. Well Once I was done with the Prednisone I was in remission for about a month. I think what caused the next flare was me eating oreo cookies! Well I went back to the GI they prescribed Prednisone and enemas again.. Well Once I tapered off I was in remission for about another month. Then I got another flare because my uneducatedness for some reason didn't know I couldn't take Aleve(NSAID) and it caused another flare. Well I went back to the GI and she didn't want to prescribe me prednisone and enemas again, she wanted to try something new after this flare, but prescribed me pred and the enemas anyway.. starting at 40mg tapering 10mg each week.. Well I started to feel good, but this time the blood never stopped.. I would bleed every other day or every three days just randomly. Well I tapered off the prednisone and unfortunately a few days later i got food posioning :( Another flare!! It's been madness! Well now I am bleeding everyday, only on Apriso no enemas or pred. Also, I have a very bad cold! Which I am sure is thanks to pred lowering my immune system? Anyone else sick a lot ? I can't see my GI till Wednesday!! So I am wondering what I should try to do next? Should I try Humira? Remicade? Sulfasalazine? Asacol? or anyone have any suggestions? I really don't want to go back on prednisone again.. Also does anyone know how much you can bleed before you become anemic? I was thinking about trying to find an urgent care to try to get my blood and inflammation levels checked while I am off the prednisone. Well that's my story if you have time to read it I would appreciate your opinions and advice!
Posted 2/20/2014 3:51 PM (GMT 0)
Sorry you have developed the dreaded uc. There are some dietary changes you can make (gluten/dairy free to start, or scd/paleo diet helps many). Are you taking any supplements? Probiotics? Prednisone stops working after a while,many has yucky side effects which is why your doc didn't want to prescribe it a third time. I bled for 2.5 years before becoming anaemic, everyone is different though.
Posted 2/20/2014 3:55 PM (GMT 0)
Welcome, I read your story but I'm not educated enough to answer your questions. It took me a couple years to "get on track" continuing the same meds.
My first thought was maybe something else would happen once a month to cause you to flare, like stress.
Chocolate messes with my colitis.
I was sick a lot at first, but haven't been as sick this last winter as I was afraid I would be.
Not a lot of help, but certainly understand what you are going thru.
Posted 2/20/2014 4:11 PM (GMT 0)
Welcome, new. The history you've reported suggests to me that you simply lapsed back into your flare when the effects of the Prednisone wore off. Now, like many people here, you've become somewhat resistant to Pred and it may no longer help control flares. I suspect you've actually been in flare all the time, with your symptoms temporarily controlled by steroids.

Most doctor will look at other available 5-ASA's: other preparations of mesalamine, or balsalazide. Since these are actually topical medications, it can make a difference where in the colon they are released and this is the primary difference in most of them. After that, the usual move is either to an immunosuppressant such as azathioprine of 6-MP, or to a biologic such as Remicade or Humira. Before that, however, you might ask about rectal mesalamines - Rowasa enemas can sometimes help control UC when oral meds alone don't do the trick. Doctors often don't suggest enemas because many people won't use them.

I would stay away from the ER and the doc-in-a-box (urgent care) unless it is a true emergency. They aren't GI specialists and usually know very little about UC; they also don't know your history. Usually they will just give you a steroid to hold you over until you can get to your own doctor.

The blood is always much less than it looks like, and most people have to bleed for a long time before anemia becomes an issue.

Do you know what parts of your colon are affected? UC can present as proctitis (rectum only), proctosigmoid (rectum and sigmoid), left sided (rectum, sigmoid and descending colon) or pancolitis (entire colon affected.) It's helpful to know what areas are affected when we talk about treatments.

Also, don't beat yourself up too much about diet. The only way to know what really bothers you is to keep a food diary for a few months to see what you react to every time you eat it. Many of us find that what we eat has no effect on our symptoms or the progression of our disease.

Good luck and keep posting as I'm sure there will be a lot more advice coming your way.
Posted 2/20/2014 4:12 PM (GMT 0)
I currently am going gluten free, but I should try the SCD Diet! I have been eating bananas, toast (Expensive gluten free bread lol crazy), chicken (boiled), and creamy peanut butter those are the only things that don't upset my stomach on this particular flare. I should look into the whole dairy thing.. but i don't think it's ever bothered me.. but you never know! silent but deadly! I am not taking any probiotics or supplements.. I am afraid to take anything new hehe.. as you are all quite aware! Thank you for your guys replies! I appreciate it!
Posted 2/20/2014 4:16 PM (GMT 0)
@judy2, thanks! I was thinking the same mindset as the ER/Urgent care would just prescribe me prednisone and send me on my way.. I haven't had health problems my whole life and I am learning how the lovely american health system works hehe. I do not know what parts of my colon are infected.. another thing i need to find out :( Only thing I know is that my Nurse Practioner from when i was admitted into the hospital said I need a Crohns Disease test but I couldn't afford it at that time and still haven't had one, I guess that is different from a colonoscopy? or the hospital was lazy? i dunno! But thank you guys!
Posted 2/20/2014 4:28 PM (GMT 0)
I tried colazol, lialda, and 6mp before settling on Asacol. I think a lot of people find they have to try several different remedies before they find one that helps. Personally I think trying the meds with the least amount of side effects is preferable to opting for stronger stuff right away so I would suggest you try a different form of mesalamine, such as Lialda or Asacol. Enemas are unpleasant but very effective in my experience.

Like others say. I passed blood daily for several years and did not become anemic until I got sick with an infection and could not hold down any food for four or five days.

Good luck. I hope you get this figured out soon.
Posted 2/20/2014 4:32 PM (GMT 0)
Hi I am new to this terrible disease too, I am still learning a LOT, so I cannot give you advice on drugs, but what I can tell you is that everything I put in my mouth at the moment will determine whether I rush to the bathroom or not....I have suddenly become lactose intolerant, so I am now taking Soy milk, my symptoms aren't as severe as many peoples, I am going to the bathroom, once, maybe twice a day...but as soon as I eat the wrong thing then off I go again!...so start a food journal, it will help you, and also it does take some time to discover what you can and cannot eat...yesterday I did research on Yogurt, many people can take it, so I thought I would try it, I woke up at 3 a.m last night cold, and needing the bathroom...its not an easy journey we are on, but you can help yourself if you are careful at this stage with what you are eating.
Posted 2/20/2014 4:44 PM (GMT 0)
Hopefully I won't be flamed for saying this, but if you eat something and you immediately get an urge to use the bathroom it may not be the fault of the food you are eating, but a matter of the process of eating stimulating the digestive tract. I can't remember what it is called, but is common in babies and evidently happens sometimes with people with bowel disease.

When I eat at certain times during the day in a flare, I almost guaranteed to have to leave the meal for a bathroom trip regardless of what I am eating.

Anyway, food for thought. (ha)
Posted 2/20/2014 5:03 PM (GMT 0)
Yeah. Even water can cause you to run to the bathroom.
Posted 2/20/2014 5:07 PM (GMT 0)
madabs, our gut is programmed to be efficient. As soon as we smell food, our salivary glands start secreting saliva to start the digestion process. As soon as we start chewing food, the rhythmic movement of the GI tract (called peristalsis) steps up in preparation for processing that food. Sometimes I used to get the urge if I chewed gum! It's all physiological and not at all your imagination.

When I was flaring (5 years straight) I never ate a meal without having to excuse myself to go to the bathroom. And it made no difference what I ate, just some things hurt more coming out than others. I had to cut way back on my Mexican food! Now I can eat everything in moderation, but do have to be careful with how much high fiber food I eat.
Posted 2/20/2014 5:12 PM (GMT 0)
I remember having a dream about eating food and I immediately woke up and had to run to the bathroom.
Posted 2/20/2014 5:27 PM (GMT 0)
Just some added thoughts:

My son has a really good GI who told him unless he knows he will bleed to death and die, avoid the ER and urgent care clinics.

I can tolerate gluten but not wheat.

What about applesauce?

If a bad food for me is going to cause D, it will happen 2 1/2 days after eating it and then take who knows how long to get back out of the flare (like cabbage or drinking wine with dinner).

I'm pretty sure I am lactose intolerant, and soy bothers my stomach, someone told me I might be allergic to soy.

 

Posted 2/20/2014 7:04 PM (GMT 0)
Thank you all! . I will stay away from the ER unless it gets very bad and i start getting weak.. I think this is just a mild flare though.. only 2-3 bm's a day I dont have the nausea yet or the severe cramps.. I am hoping all the water i have been drinking is helping with those.. I did a test to drink ALOT ALOT ALOT of water and see if the pain subsides.. well It's day 3 and it isn't that bad at all, I figure if it is the same tomorrow maybe a lot of water helps with the pain/nausea? or maybe it's just my type of flare.. I don't know.. just investigating hehe I am praying I can fight it naturally lol! *crosses fingers*
Posted 2/20/2014 7:18 PM (GMT 0)
I'm not really convinced that the water itself is responsible. Is it possible that the amount of water you are drinking is causing you to eat less? Some diets tout drinking lots of water to decrease appetite.
Posted 2/20/2014 7:22 PM (GMT 0)
ooohh.. could be I have been eating light the past few days.. good point!
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