Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

What is Normal with Colitis

Introduction:

I am 32 years old and diagnosed on Jan of 2010. Long suffering due to my own stubbornness to conform to a diet or meds. After a hospital visit started following the SCD diet loosely and taking meds like I should.

Some more about me:

I am a weight lifter/ bodybuilder, 4 times a week even when I was crappy from flares. Loved the results I was noticing and got hooked instantly. Having trouble with the lifters diet though. Protein shakes, preworkout supplements and necessary cals to continue to grow.

Symptoms:

  • Cramping
  • Bloody stools
  • Mucus
  • Gas
  • Frequent bathroom trips for rabbit poops

What is Normal?

My first symptoms started in fall of 09 with blood in my stools. I went to see my general physician and he told me I had too much beef in my diet lol. Soon after that I noticed mucus around my turds. That really got me worried but not enough. Soon after that I started getting the urges to go to the bathroom. Ever since I was young I would just hold it in and wait for a convenient time. Except this time I couldn’t and as much as I tried I thought I crapped my pants. I run to the bathroom and instead if diarrhea it was all mucus. Gross! It kept happening and I was embarrassed and that is what got to go see my first GI. I wad diagnosed with UC in Jan 2010. It has been downhill from there due to my own negligence with meds and not following a proper diet. I was young and stubborn. The worst days I was hitting the bathrooms 25+ times a day! Literally nothing would come out.

After my latest hospital visit I was prescribed prednisone and canasa. I also started following the SCD diet but still eat 1 serving of bread for carbs and calories. Still take my protein shakes with water. I need the protein and calories. Overall I see great improvement and I am even starting to see formed bowels and considerably less gas. So obviously this is working but I have just been doing this for the last 10 days. My prednisone is finished and I am left with Canasa. I am worried that with prednisone finished my symptoms might come back.

My question is how do I know when I am better?

Should the mucus stop?

No blood?

Should I have a BM everyday?

What is normal with UC?

All I know is pain, cramps, and bloody water.

I ask because I am still in the experimental stage of what type of foods my body can handle. I would like to know what are the signs from my body that I ate something I shouldn`t have.

I look forward to your guys responses. This site has been a god send. There is so much information and knowledge here. Even more so than my own doctor.

Medications:

Asacol- didn’t work and kept upping the dosage. I just stopped taking it on my own
Canasa- saw great improvements but a pain in the rear to use
Prednisone- 10 day taper helped kick this flares butt! Only side effect was joint pain but not much. I feel lucky especially after reading some of the reviews.

written by Rob

submitted in the colitis venting area




12 Responses to What is Normal with Colitis

  1. Caroline
    Caroline July 4, 2013 at 5:24 am #

    Hi Rob! I can definitely relate to all of your questions – I had my first flare last winter and was diagnosed in January. The prednisone definitely helped settle things down so that true healing could happen, but it took some time. I take Apriso, VSL (prescription probiotic – if you aren’t taking a probiotic I would highly recommend one), L-glutamine to heal the colon, vitamin D, fish oil, and astaxanthin. Sounds like a lot, but this combination seems to be working for me and I am continuing to get better. I’m also on the Paleo diet and I know that has been a big help to me.

    I stopped bleeding within a week of starting the prednisone, and bit by bit I got my energy back. I think it was about 3-4 weeks before I had my first solid poo (in like 5 months – I never thought I would celebrate a solid turd but it was a very happy day). The thing that I had to realize though is that the healing isn’t necessarily linear. It’s not like every day I got better and better – it’s more 2 steps forward, 3 back, but the overall trend was good. I would freak out if things got a little looser, or if I had a little blood come back, but I learned that as long as the big picture was good I was still recovering.

    I consider myself in remission. I feel fantastic – maybe even better than I did before I knew I was sick – my energy is great and I sleep well. Do I still have symptoms? Here and there – I still have some urgency in the morning but it’s nothing I can’t plan for. I go about 2-3 times a day, which I’m okay with. I also still pass some mucus here and there – one day that will go completely away, I’m sure. But for now as long as I feel good and can live my life I am happy with that! Such a far cry from the winter, when I was feeling terrible and living in the bathroom, and in so much pain.

    It’s all a matter of figuring out what works well for you. My advice, and you can take it or leave it, is to focus on getting well right now. I am a total gym rat and know how much it sucks to not be at the gym or lifting, but my doctor told me that my body could only focus on one thing – either healing my colon or creating new muscle. I backed off for a bit and I’m back and stronger than ever now. It’s not forever, and you can find something a little more gentle to do for a bit – but I think if you focus on that you will give your body an opportunity to heal. And that goes for the diet as well – if you want to experiment with SCD, try going all in and giving up the bread to see if it makes things better. You can find other ways to supplement with calories – I lost a ton of weight but full fat coconut milk helped me gain it all back. Everyone is different, but a lot of people have had success giving up their grains completely.

    Best of luck to you and keep us posted! Feel better! :)

  2. Adam
    Adam July 4, 2013 at 7:08 am #

    Hey Rob,

    Caroline has some super good points and general ways of thinking in terms of managing UC. And, I definitely don’t think she’s unique with how she’s going about it.

    One thing regarding mucus and your question on “should it stop?”
    The mucus can go on for a long time for some people. Not only when active/noticeable symptoms (bleeding,cramping, urgency) are present. But even when all things seem to be normal (hard poops, no bleeding etc…). So, I wouldn’t worry about it all that much. Sometimes people experience mucus while in flare ups, sometimes not. I’ve been in both camps over the years.

    But, yes, the mucus can stop, it most certainly has for me and many others.

    Wishing you the best,

    Adam

    (PS, how much have you gotten up to with the bench press & squat in the gym?)

  3. Rob July 4, 2013 at 11:57 am #

    I am doing better I just need to stay on course. The cruelest thing about this disease is that it takes so much from you. Caroline you are right I do need to give my body a break and allow it to focus on healing. I go lift 4 times a week and to be honest I feel exhausted. It’s just hard. It is what I have been doing for the past 5 years. This will bebe harder to quit than the dieting changes. I was diagnosed 3 years ago but I am still in the acceptance stage because I never really followed any diet or med regiment like I have been doing now.
    Thanks for the responces it is reassuring to say the least. Adam I was benching 315 and squatting 405. I can’t do that anymore though I have lost so much weight and muscle. I will get back there though I promise.
    Adam I saw you Youtube videos on your pullup challenges from a year ago. Very impressive. Do you still train on pullups?

    • Adam
      Adam July 4, 2013 at 1:19 pm #

      Daaaaaaaamn!!! 315, wow, super impressive!!! Unless someone else chimes in, you might be the world record holder as far as this site’s concerned.
      As for me and training with pullups…no, I’ve fallen off track. But, I’ve been getting a pretty good workout lately with hauling and throwing over the shoulder 50 pound sacks of bird feed…seriously, not a bad workout.

      Wishing you the best, and don’t trip out too much on the weight loss. It’s unfortunately a super common part of the UC dance, and you’ll get it back over time.

      Best,
      -Adam

  4. KimberlyHI
    kimberly July 5, 2013 at 12:16 am #

    Hi Rob! For me, I know I’m better when I can function well, am not seeing blood or diarrhea, and can make it through each day without major discomfort. I had the mucous for a long time but it finally went away. 1-3 bowel movements a day seems to be the magic number but I think it varies. But even in remission, I still sometimes get diarrhea or too much gas and cramping.
    I was so upset last time I got sick because when released from the hospital my quads and calves were gone. I am small anyway, I do not lift but like jogging. I could barely walk down the street! I had to build myself back up and am always scared I will get sick again and have to start all over. Anyway I can finally do long distance running again now and I wanted to ask if you think the protein shakes hurt your uc at all? I am taking a soy based and very little just after running because it helps with the muscle soreness. I get gassy sometimes but is that normal for everyone? I wonder if it’s my body adjusting to The protein or if it pisses off my uc.
    I hope you are feeling better. I guess, Frankly, us ucers are never “normal” but we can reach a point where we can live life to the fullest.

  5. Rob July 5, 2013 at 2:45 am #

    Thanks for you response Kimberly very encouraging! As for my BMs I usually have 1 – 2 movements every 2 to 3days. I have always had issues like this so I don’t think it is the UC. I also removed all processed foods and startches and 1 serving of grains. This reduced myfood intake so I am sure this plays a part in my BMs. For protein I was taking whey protein isolate. I read this type had no lactose but it still messed with my UC. I swirched to Muscle Milk and that doesn’t bother me at all. I even add almond milk with a banana for the extra cals. It’s pretty tasty!
    Does running or working out bother your UC? I have heard of strenous activity bothering some.

    • KimberlyHI
      Kimberly July 5, 2013 at 11:57 pm #

      I sometimes go a day with no BM, I agree I think it depends on what I eat. I seem to be more regular if I am working out regularly. I don’t think running or workouts mess with my UC but I am careful about not overdoing it, I think if the workout overstresses your body you may cause a bit of flaring. Definately stress causes my flares to show up and the running and cardio relieves stress so hopefully it helps my UC, but if I went and ran a marathon tomorrow I may be in trouble!
      I was taking whey too at first and I thought it was causing a little stomach discomfort so I tried the soy and it seems much better. I just mix with water but I have switched to almond milk too! That stuff isn’t so bad, I don’t even miss milk. I am not flaring but have had an increase in cramping and gas, but I altered my diet too recently so not sure if it is that or the protein. The diet is just more fruits and veggies which I know can irritate things in my gut. The dilemma is being scared a flare is starting! But I think it is probably the increase in fiber and protein.
      Are you still on the prednisone and canasa? I hope you find something that works! Diet change works well for a lot of people. Personally I love food so that is my downfall. :)

  6. bev July 5, 2013 at 7:48 am #

    What is normal? Aaaahh…what is normal…

    I can say that when you are not bleeding at all…when you have no pain or cramping…when you have a solid formed BM….only them are you truly in remission. I’m not sure that the mucus matters as much as blood.

    The colon is supposed to be mucusy…I have to concur with Caroline, up above, fermented L-glutamine will HEAL the ulcers in the colon. I take it every day, and will forever.

    I also take a GOOD probiotic, every day forever…namely ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. You must take probiotics on an empty stomach and then no eating for at least half an hour afterwards. I also take the L-glutamine on an empty stomach.

    Here’s the kicker…I am on NO MEDS any more and have been off them and in remission for 14 months on these two wonderful natural things mentioned above! I know! I am anti0med as well…and I follow NO specific eating plan or diet either!!

    Life can be good again…you just have to persevere. You have to take these things every day, and properly (on an empty stomach).

    Cheers,
    Bev

  7. Sharon July 5, 2013 at 7:48 am #

    When I am in remission, I have a BM in the morning with no mucous or blood or cramping. I may occasionally have a 2nd one in the evening as well. I consider myself in a minor flare if I have any mucous. I have had UC for 23 years and this is the way it has always been for me. I have gone as much as 2 years at a time in remission.

    As for the gym, the trainer told me I should “train like a beast” when I am healthy so that my body is prepared when I am sick and can recover more quickly. If only I would take his advice. I don’t think the occasional yoga class qualifies as a beast in training :)

  8. Rob July 5, 2013 at 9:34 am #

    Thank you Bev for the advice I will consider the probiotic and glutamine. I have taken glutamine as a lifting supplement before but stopped because at the time I was taking so many supplements at a time.

    Sharon that’s funny on beast yoga training. I bet that helps out on getting things moving.

    Anyone use a laxative or a stool softener to ensure a BM? I have read it could cause a flare. I am in a good place right now I definitely don’t want any setbacks. This community is wonderful it feels great being able to talk to people that understand :)

    • bev July 5, 2013 at 10:16 am #

      Any time Rob! I wish I had have had good advice when I was first diagnosed. Instead, I spent 14 years and a lot of money on useless medications that never helped me and only made me feel even more sick.

      Can’t get those years back!

      Bev

  9. Andy July 9, 2013 at 1:50 am #

    I wouldn’t worry too much about additional glutamine, you should be getting a lot you are taking a protein shake. Mine has something like 7g per scoop(check for glutamic acid), you could of course do more – but 7g is more than most supplements provide. Probiotics I highly recommend, and try to get some freshly fermented foods into you routine(homemade yogurt, sauerkraut).

    Two things to watch out for with weight lifting supplements:

    – Whey powder increases gut permeability(read diarrhea) I can’t take it during a flare, and I am only up to half a scoop now. However I found some sun warrior brand that was sprouted brown rice protein that I could tolerate no problem. Not as good as whey, but better than nothing.
    – Creatine. Stop this completely for a week, then buy it separately(not pre-mixed with whey). Build it up slowly until you find where it starts to give you the runs. I can only get about 3g down before I find a noticeable change in stool quality. Also helps to mix creatine with a hot drink. One of the reasons it gives you runs is because its nearly insoluble, your body tries to dissolve it by sending water/bile down into your GI tract to try to break it down. I put it in tea/coffee and stir for a while, or spread out the doses to lessen the effect.

    I am not heavy, but I weighed around 56kg around the end of my last flare. 6 months after it has stopped, I am 72.5kg which is about normal for me. I’d like to get an extra 5kg on as some buffer.

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