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Diagnosed May 2011 Ulcerative Colitis

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Ulcerative Colitis
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Posted 6/23/2011 1:21 PM (GMT 0)

So here's my story. Looking for any information, suggestions, answers etc.

Last fall I started noticing blood and mucous in my stool. I promptly made a doctor's appt with my family physician who referred me to an internal surgeon. The surgeon did a sgmoidoscopy and determined that I had proctitis. She prescribed Pentasa suppository's daily which ended up taking away the blood and mucous.

In February my husband and I had a small snowmobile mishap and I tore all of the ligaments in my knee which was quite painful so the doctor put me on slow release Naporsen for the inflammation. I continued to take the aphorism until the first week in May. I stopped as my knee was feeling much better.

Approx a week after I stopped taking the naporsen I started having flu like symptoms, upset stomach and diarrhea and major cramping and within a couple of days I had quite a bit of blood also. I went to the emerge and the doctor said he figured it was a flu but that they wanted me to do stool samples to check for infection/bacteria. I did the stool samples and over the next few days my diarrhea got progressively worse to the point that I could not even hold water in my body. I returned to the emerge where they gave me IV fluids in the morning and evening and sent me home to do more stool samples. Within a couple of days I was so dehydrated that I couldn't even get out of bed. Back to the hospital I went where they admitted me. The stool samples came back fine so the doctor decided to consult with a GI specialist. They performed a scope and found that I had ulcerative colitis. They put me on IV prednisone for 4 days and then sent me home on 50 mg of oral prednisone. I was home for 2 days and the cramping and diarrhea started again. Back to the hospital I went and they admitted me and put me back on the IV. They started me at 125 mg twice a day for a week and then started to wean me off (80 mg twice a day and then oral prednisone starting at 50 mg daily). I am now at home on the oral prednisone and am down to 40 mg a day decreasing by 5 mg per week. Am also on Pentasa tablets 1000 mg 4 x a day and Imuran 100mg twice a day. I am feeling better although I am having some side effects (insomnia, my hands are shaky, heart palpitations and feeling anxious/hyper alot). Is this normal? I have read that these can be side effects of prednisone?

Other questions: 1. How do you know if you are in remission?  2. When should I start adding fiber back into my diet (i.e. whole wheat bread, raw fruits and veggies (have been on a low residue diet).  3. How long should I be off work for? (I am a mortgage specialist, my job is fast pace with quite a bit of stress. clients and realtors are quite demanding at times).

Any suggestions, reccomendations, information would be much appreciated! 

 

Posted 6/23/2011 3:09 PM (GMT 0)
Welcome Skidder,
Sorry to see you join the UC community. I am fairly new here myself, new to UC as of 2 months and am still trying to grasp all of it. I have found on this forum alot of great advice and have gotten alot of answers to my questions as well. As far as your remission question, I asked that last week and the answers I got were that when you have no blood, no urgent bathroom trips, normal BM's is total remission. And to get there seems to be different for each person. I would say that as far as your work, well... listen to your body and when you feel well enough and have the BM's under control enough to go back then that would be a good time. I had horrid urgent and very frequent bathroom trips which made work hard for me as well. I see a huge difference with taking Lialda... less frequent and not all urgent runs to the restroom...still have bad days occasionally but overall better. I think you (like myself) got very far down before you got diagnosed so the getting better takes time.. the side effects of the pred are awful.. so most of what you are going thru with it is sadly normal I think. I am trying a new natural approach(along with Lialda) to see what happens, it is basically aloe vera juice with some other stuff in it.. the health food store lady swears by it( her husband has colitis of the esophogus sp? and he was in bad shape and started drinking this stuff everyday and went into total remission with very little scaring from the ulcers), if I can stand to choke it down long enough to see if it helps, I will let you know. :)
When you changed your diet, did you see any improvement? If not, then you could probably start eating those things again when ever you feel like it. I haven't changed my diet yet, wanting to do things in steps to see what makes improvement and what doesn't.
Good Luck and hang in there...
Posted 6/23/2011 3:15 PM (GMT 0)
hey skidder,

sorry to hear about the complications, that sucks about the knee, glad it is feeling better.

I have not dealt with prednisone yet, so I cannot help you there, however I will offer my condolences and keep you in my prayers.

about the low residue... I avoid all fiber while on the low residue, and then when BMs start looking fuller and no more blood, start slowly adding some fiber. For example, I may have a full low residue day, except for lunch where I have a couple pieces of lettuce on a tuna sandwich. See how that works (lettuce can make the gut work pretty quick), but at this point of your flare, the urgency should be gone and you should be ok. If this ok, maybe a chicken&rice dish with some veggies the next night. The fiber will help build stools so this is all good, just note if you are building them too quickly, there may be some blood. Just be careful, chew and eat real slow w/ plenty of water and rest.

Notice that strained peaches are low-residue... Make sure you strain out the juice real nice, probably wash them in water... A delicious dessert.

Remission is a sort of "temporary" (since there is no cure yet), relief from UC symptoms, so you will have normal BMs, no blood or diarhhea, no urgency, practically like you do not have a disease... I would say you know you are in remission when you have 1-2 full BMs a day, can eat just about anything you want (save for spicy, greasy, alcohol, nuts, things soaked in butter/dairy, ...(but everything in moderation... it might work for you)), no pain from the abdomen, and life again, is good :)

Hope you find remission soon! Take as much time off from work to relax, and try to reevaluate how to not stress so much about your clients. Colitis requires a lot of patience. And time for the patience. Make sure you are ready and you will come out on top of this thing I promise.

Best!
Posted 6/26/2011 1:31 PM (GMT 0)
skidder,

Welcome to the forum. Too bad you have to be a part of this terrible UC club :(

Yes, Prednisone has some nasty side effects, and yet some get good results with it. Problem is your body builds up tolerance to it too.

My suggestions: diet, supplements, reducing stress levels, and asking LOTS of questions to the docs.

Diet: many have found SCD - specific carbohydrate diet - to be very helpful in reducing symptoms.

Supplements that have scientifically/clinically proven to be helpful to UC: 1) Probiotics - I like VSL#3 because its got 450 billion active cultures, 2) Slippery Elm Bark Powder - to coat the entire gut (nature's mesalamine) 3) omega 3 or krill oil supplements at least 2 grams per day to help with inflammation 4) L-Glutamine powder - at least 15 grams - to help  with colonic repair, 5) drinking lots of good water.

Reducing stress level: yes, that's a given. But seriously, try some meditation?

Are you using any rectal meds, like canasa suppositories? or  enemas? Those help many too.

And lastly, I am a strong proponent of Transdermal LDN. There's lots of data out there showing success stories with it.


 

Posted 6/26/2011 1:33 PM (GMT 0)
skidder,

P.S. As a start, I would recommend staying away from any wheat and dairy products and see how it makes you feel :)

If you like milk, you can try Almond milk, which is quite good.

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