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Diagnosed 9/18/14

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Ulcerative Colitis
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Posted 10/14/2014 2:06 AM (GMT 0)
New to this forum thought i would say hello. Ive been reading a lot of what everyone has been going through and all the information has been helpful. I just wanted to share what i have gone through so far and what i am doing to try and get a handle on it. Back in June my primary doctor said i had two internal hemroids but by july i was bleeding a lot and going to the restroom was a nightmare going every 15-20 min. I finally made a GI appointment and had a colonoscopy done and the biopsy showed UC. They have me on Lialda twice a day and for the first week and half i was nausiated with headaches which made it hard to go to work but then i started taking a nausea pill i had from a surgery i had earlier in the year which made it better. I had no appetite and looked like I was very sick according to my co-workers. I had one bad flare up about a week ago and thought i was dying. I have never felt so much pain in my life i was begging for it to stop. My GI doctor put me on Colocort Enemas for 21days and this seem to calm it down along with a liquid diet cause tha'ts all i could get down. I found that Egg Flower Soup is a great soup to drink at least for me. not sure what sent me into flare up. I am a runner and had a running event and I carb loaded on pizza and cinnamon twist the night before as i always do. I went into flare up the next day. I was a wheat bread eater and they told me to eat white bread but i am reading that sour dough bread is better? I drink almond milk but hear its not good cause it causes inflammation? I have lowered my sugar intake as well.
Along with the Lialda i also take Shaklee Viata-Lea, Shaklee Alfalfa Complex and Shaklee Optiflora Prebiotic Complex Two Step. This seems to be doing a great job but have only been on them for about two weeks now. I had read in other blogs about the Shaklee products healping other people so i figured it wouldn't hurt and one of my friends is a health coach and is a rep for the product which helps me even more. she is also starting me on Vitalizing Protein Shake as well. My nutritionist has me on a low fiber intake as well so the my colon can recover from the flare up and it seems to be helping.
I hope im not over doing it on the information i just thought i would tell it all now and get some feed back. I do have one question that seems to be something really no one can help me with. Are there any runners and or cyclist out there? Does anyone know if activity causes flare up? Not only am i scared to eat anything but now am wondering about sport activities. cry cry not sure if this is too much or to little information but any thoughts or comments are greatly appreciated. Thanks for caring
Posted 10/14/2014 2:18 AM (GMT 0)
I remember my first ever UC symptoms appeared after running. I think running/cycling is bad for UC at least short term, it awakes your gut, causing cramps.
Posted 10/14/2014 2:28 AM (GMT 0)
That's not good cause I'm running in a half marathon on Sunday. Guess I'll be jogging/walking it than. Thanks for the input cause I know blood rushes to your gut when doing activities but I didn't know how that would effect the UC
Posted 10/14/2014 2:33 AM (GMT 0)
Welcome to the forum. Sorry you have to be here, but it's a good place for information.

I use the optiflora and like it quite a bit. It doesn't give me the gas pains others do. I've used the alfalfa in the past, but didn't notice anything from taking it. I take so many other pills now that I'm not interested in swallowing anything that isn't doing anything for me anymore. I'll be curious if you find it helpful.

I don't think physical activity causes flares. In fact, I notice I do better when I'm getting enough sleep, exercising regularly, drinking a lot of water and avoiding stress. I'm no where near what one would call an athlete, however. I don't exercise to the point I'm worn down, so that may be why I benefit.

It sounds like you have a lot of healing that needs to happen. It's good you're being gentle on your colon. When I know my colon is recovering, I eat a lot of things like avocados, baked potatoes, macaroni & cheese, omelets, etc. As I mentioned in another post, I am getting away with fistfuls of raw spinach daily. I tried sunflower seeds, because it was suggested sunflower seed and spinach help UC. I found the seeds to be painful.

Did your GI say how much of your colon is involved at this point? Just curious.

By the way, I got nervous with some of my friend's recommendations for supplements. She's a Shaklee rep, too. I've been using the optiflora for years...before my diagnosis. Some of the things she suggested appeared to be designed to give my immune system a boost. I haven't had this long enough to understand if I should be boosting my immune system while trying to turn it down with immune suppressors. I've seen recommendations to avoid doing so and recommendations to supplement to make up for being compromised. I haven't been able to figure out who is right.
Posted 10/14/2014 2:45 AM (GMT 0)
It's my the left side of the colon. I go back in a year for another colonoscopy. I just realized that I might have a hemroid now. I hope I can put meds on it or something since I'm doing the enemas. Just when I think things are looking up I seem to be brought back down. I hope I don't sound selfish but if I can't run or ride I don't know what I'll do. Sometimes I feel like I'm getting depressed cause this is taking over everything that I'm use to doing. I don't wish this on anyone is horrible. I'm staying positive and not trying to be down
Posted 10/14/2014 2:53 AM (GMT 0)
That's not selfish at all.

I wonder if you'd feel depression even more so since, if I understand correctly, endurance sports like distance running/cycling release endorphins. Experiencing the loss/decrease of endorphins from cutting back running/cycling while also going through something that's as much of a downer as UC can be, might be a double whammy for you.
Posted 10/14/2014 12:22 PM (GMT 0)
People that live in particular lifestyles seem to be more prone to UC than the general public. Many weightlifting lifestyle people seem to come down with the disease. I don't personally believe it is the physical aspect that is responsible but the lifestyle food/drink intake that messes up the system inside. I'm not so sure about all of those concoctions you are taking now as they could be making you worse, at least some of them. If ingesting these things were the cure it would be common knowledge. I know people want to help but anyone wrapped up in alternative lifestyles always seem to suggest something from their lifestyles that is supposed to help but they actually have no knowledge of this disease and are therefore not really able to give you treatment suggestions based in reality, only based on their own lifestyle prejudices. There are many aspects of the disease that are not fully understood, even by the professionals. In my case I discovered that my UC has given me a histamine inolerance. Many UC'rs are low on the digestive enzyme DAO, which helps metabolize excess dietary histamines. If you eat too much histamines (such as some of the foods and drinks you mentioned) you can in fact overdose on histamine, giving you worsening UC symptoms. This is not the case with all UC'rs but merely an example of an aspect of the disease that you might not be aware of.
Posted 10/14/2014 12:38 PM (GMT 0)
yup. I would ditch the running for a while = I don't believe our body's heal very well when they are stressed - not saying to adopt a sedentary life, just take it easy for a while - if you're a runner you've probably had some injuries, and some of them just need rest - now your whole body is injured -

good luck -
Posted 10/14/2014 1:06 PM (GMT 0)
Thank you for all of your responses and yes after this run I am going to start walking and doing other activities lower impact on the body. Going to make a follow up appt with GI and primary do for to stay on top of things. I will keep up on the forum of any questions I may have and talk about other things going on.
Posted 10/14/2014 1:08 PM (GMT 0)
Welcome to the forum. Everyone who has posted to you that you need to stop running - they are clearly not runners. I do not think you need to stop running.

However, I would question your treatment protocol so far. Two Lialda per day does not seem like an adequate approach to resolve your first flare. I'm glad your GI finally clued in and got you some cortisone enemas - they should help a lot. Once those are done you should get some mesalamine enemas and use them in conjunction with your oral meds until all of your symptoms are gone gone gone. All of them. Once you are in a solid remission you may be able to reduce the frequency of the mesalamine enemas.

about diet - a low residue diet is a good way to relieve symptoms while you are in an active flare. Sure, sourdough bread is good - the fermentation process will add some good bacteria to your gut. Plain old white bread isn't a problem, just no good bacteria. Cook your fruits and veggies for now to keep your gut from being too challenged. Once the rectal inflammation is resolved you should be able to add back uncooked fruits, vegetables and some whole grains. Everyone's different with regard to diet; keeping a journal might be helpful.

Running activates your gut, as you know. It is possible that you will have more diarrhea than you used to in your marathon run this weekend. If you can stay well hydrated then I see no reason why you shouldn't just keep on running. You might feel more fatigued right now because of the active disease - try to get more rest than usual.

The cortisone enemas shouldn't be too bad in terms of side effects from the steroids, but it is possible that you will start to feel some - sleeplessness, edginess, maybe skin changes or a puffy face. Those will go away when you stop using the steroid enemas.

Glad you're here.
Posted 10/14/2014 1:12 PM (GMT 0)

Garylouville said...
I know people want to help but anyone wrapped up in alternative lifestyles always seem to suggest something from their lifestyles that is supposed to help but they actually have no knowledge of this disease and are therefore not really able to give you treatment suggestions based in reality, only based on their own lifestyle prejudices.

You don't know what you are talking about.

I do not not not take any meds, never have. Yet I have been in remission for over 4 years by using natural supplements and monitoring my diet, which you derisively label as “alternative” lifestyle prejudices.

Nobody is telling her to avoid meds. I don't hear anybody telling her that they have found an alternative “cure”. All I hear is some advice that has helped others and may or may not be helpful to her.

I am just as ready to advise someone to take rectal meds as I am to recommend probiotics. But I will always be eternally grateful for this forum because here I learned about such non-medical ideas as powdered psyllium seed, fish oil, and probiotics. They turned out to be my wonder drug that keeps me in remission.

Everyone is different. Just because alternatives do not work for EVERYONE doesn't mean that they should be written off and ignored.

There are many on this forum who are allergic to conventional meds, or have said out that conventional meds do nothing for them. All meds can have toxic side effects, even the milder mesalamines have been known to cause pancreatitis and kidney stones. People should be made aware if there might be some alternative treatments that can allow using less meds or avoid graduating to the “big guns”.

When you continually stifle the dissemination of ideas then the value of our forum is seriously compromised.
Posted 10/14/2014 1:23 PM (GMT 0)

cyclegirl said...
I carb loaded on pizza and cinnamon twist the night before as i always do. I went into flare up the next day. I was a wheat bread eater and they told me to eat white bread but i am reading that sour dough bread is better?

I agree about keeping a food diary. Many on this forum have discovered that gluten (wheat and bread) can be a trigger for flares. Sometimes dairy too.

Hopefully you will find that wheat and dairy aren't your problem.
Posted 10/14/2014 1:29 PM (GMT 0)
Once again you have twisted my words and taken them out of context. I wasn't even talking about you. I don't see where you even made a previous post in this thread. I never said that anyone was telling her to avoid meds. The things suggested to her by friends aren't even recognized UC treatments, even considering alternative lifestyles. I do alternative options and you could even argue dietary changes myself but just about every one of us here have received "helpful or hurtful" suggestions from friends and family members that have absolutely no idea what they are talking about. Just because someone is a health nut doesn't mean they know the answers to UC. Jennifer Lawrence actually made the news today for calling certain people doing the gluten free craze referring to it as being an eating disorder. Obviously she isn't an expert in this field but there are many people who have joined the gluten free craze who aren't even intolerant to gluten. Many do it just to lose weight.
Posted 10/14/2014 2:06 PM (GMT 0)
Just because someone is a health nut medical professional, doesn't mean they know the answers to UC
Posted 10/14/2014 2:22 PM (GMT 0)
All of your responses are helpful. So far no side effects to the enemas not the Lialda besides the first week of headaches and nausea. I am greatfull for that knock on wood. I have gone cycling in the last week and only felt weak I think due to the lack of protein I am use to consuming. As far as running I am going to take my time and enjoy the weekend. Not looking for any PR's so I will keep you updated. Sorry for all the termoiol on this page didn't want to cause problems but some of you are right in certain aspects and some may be wrong. I have to figure out what is best for me and if that includes trial in error than that is what is going to happen. Like we all have been saying, no one is the same. Our bodies are different and if one persons experience helps another than that is awesome. So I will take everything in and wish for the best. Be well everyone
Posted 10/14/2014 2:49 PM (GMT 0)
please please please try to ignore the .... er ....... bickering of a few of us here - we all have opinions and disagreement is an unfortunate but inevitable result of that -

it is in no way because of your post -

like most things in life, there is way more good stuff here than the other - so stick around -
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