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

Trying to Learn All I Can!

Introduction:

Hello, my name is Yvonne and I was diagnosed two weeks ago. I have started the SCD diet and feel pretty tired and very light headed. I am also taking Lialda which made a difference right away, but the change in diet is definitely affecting my energy level. I am wondering how I can keep it up. What exactly is considered remission? After the first dose of Lialda the bouts of explosive bloody diarrhea stopped and my stool is normal color but still thin. Is this considered remission? I am wondering when to add the SCD recipes for remission. It is hard to know since I am on medication. Thank you!

Some more about me:

I love to take walks, cook (bummer) with my husband, and spend time in the garden. I truly the simple pleasures of life and hope I can continue to do so.

Symptoms I’m Feeling:

I am currently on Lialda, which I started right after the colonoscopy. It alleviated the flare symptoms right away. I have a bm every morning but it is on the thin side. I can hear my stomach making growling noises in the night and morning and my body feels weak.

Trying to Learn All I Can

I was just diagnosed two weeks ago and am feeling scared and overwhelmed. I am trying to stay positive so I don’t make it worse. I really believe that the way we think makes a huge impact on our health.

  • I am wondering if others experienced any joint pain prior to the onset of UC?
  • Did anyone feel very lightheaded and weak after starting medication and special diets?
  • Does anyone else hear their stomachs make growling noises in the night and mornings?
  • Do bowel movements get back to totally normal during remission?

I am meeting with a second Doctor in 2 1/2 weeks and will also pose my questions to him/her. My husband and friends are super supportive and keep me feeling normal. I decided to talk about it right away. Most of my family and friends were already asking because they knew I had just received my 50 year colonoscopy and that I was experiencing some concerning symptoms. It sure is hard to be diagnosed with something that does not have a lot of clear information. I suppose we are always ultimately in charge of our own health.

The Doctor that preformed my colonoscopy seemed very bored with his work and was in a rush at the pre-screening appointment. He did not meet with me immediately after the procedure, a young nurse came to say a sample had been taken for a biopsy to check for UC. I was really ready for the follow up with questions and instead of meeting with him I met with his assistant. I am going to see a different Doctor in a few weeks who now accepts BCBS insurance and hope he has more interest in answering my questions. I have had time to read quite a bit of information and feel prepared to compare and contrast. I want to feel confident that I can find a way to manage this disease but for now just feel pretty sad.
Thank you.

written by Yvonne

submitted in the colitis venting area




15 Responses to Trying to Learn All I Can!

  1. Adam
    Adam March 8, 2013 at 9:57 am #

    Hey Yvonne,

    I wanted to give you some of my thoughts on your questions you posted.

    Regarding “Joint Pain” prior to diagnosis. Many people have talked about that. Whether or not active colitis was actually happening is obviously hard to say without a colonoscopy and “official diagnosis”, but many people have reported joint pains both before and after their UC diagnosis. (Me being one of them). Good news, is that it can for sure resolve and get better.

    Your second question about feeling week & lightheaded after starting medications & diets… This question I think is going to be different for nearly everyone. I for exmaple had some pretty awful side effects from a few medications I tried several years ago, a high dose of sulfasalazine being one of them. And, with diet, the radical changes that some people make when they start new diets can often lead to an initial few days of fatigue. But again, this question for sure is going to have a whole range of answers (at least that’s my best guess from talking with 1000’s of UC’ers:)

    Stomach and growling sounds during the night….heck yeah. That’s for sure one of the common symptoms of a UC’er with active colitis. Along with lots of gas, and cramping and a range of ofther feelings that has you jumping out of bed and sleep-running to the toilet…real common, and again stuff I remember from the past when things were out of control.

    Bowel movements getting back to normal…Most certainly this is possible. Some people report that they have found ways to get their logs back to normal. Other people depending on the degree of their active/inactive colitis report that things in the toilet bowl are formed, but not as hard/perfect as they used to be. And of course others have a wide range of what bowel movements look/feel like as time moves forward. But if you’re asking me, yes indeed things can get back to normal, takes more time for some compared to others, but possible.

    I wish you the best moving forward, and thanks again for sharing your story,

    –Adam

    • Yvonne March 9, 2013 at 7:28 am #

      Thanks so much, Adam. I SO appreciate this website. It has been a godsend. I am feeling better and seeing more progress as time goes on. I am sticking to the diet and hope to be able to wean off medication. It has been interesting to realize how much food brings people together. I still liek to chime in when people are talking about how delicious something is and hope that one day I will again be able to know for myself. Thanks again, Adam.

  2. joanna March 8, 2013 at 2:23 pm #

    hey yvonne,

    yeah the lightheadedness is definitely from SCD. i experienced it for the first week i tried the intro diet. i felt really terrible to be honest and always on the verge of fainting. it is just so low carb so i’d suggest moving onto the allowed carb foods-fruits and veggies- if you can. it seems your symptoms are better with lialda anyway so the added carbs should be safe. just don’t go overboard.

    • Yvonne March 9, 2013 at 7:30 am #

      Thank you for sharing this with me. I appreciate it!

  3. bev March 8, 2013 at 3:51 pm #

    I think true remission is: formed solid bms with no blood at all. No cramping. No rumbling.

    Basically…all will be ‘normal’ in true remission.

    Cheers
    :)

    • Yvonne March 9, 2013 at 7:31 am #

      Bev, this is incredibly helpful. You have no idea how nice it is to be able to ask these questions and have this connection (or actually you probably do know). I appreciate it! Thank you.

      • bev March 9, 2013 at 8:33 am #

        You are sweet!

        Cheers
        :)

    • Yvonne March 12, 2013 at 12:58 pm #

      Hi Bev, I have been searching and searching the website for a story that has a link to your probiotic story and am not having any luck. I know what type you are using (have it written down somewhere) but when I found them at my local store I noticed they have the bifido bacteria. Are the ones you take without the bifido bacteria? Maybe they just did not have that type in stock. Thank you!!

      • bev March 12, 2013 at 1:47 pm #

        Yes, hi Yvonne,

        The ULTIMATE FLORA CRITICAL CARE probiotic that I take DOES have bifido in it. I wasn’t aware that you could get it without…what is bifido…is it something that you can’t take? I’m not any sort of expert on the strains that are actually in probiotics…sorry!

        • Yvonne March 13, 2013 at 6:54 am #

          Thank you, Bev. I am not exactly sure what bifido is but I read somewhere here that it is not good for gut bacteria and that it is better to use probiotics without it. I found some at my local store I think they are by Natures Way. I’m not home so cannot check the bottle but will get that info. to you next week. I don’t know if your brand has a product without but I am going to try and find out. I wish I could remember the strand of messages that talked about bifido. Perhaps if you click on one of the probiotic links that information will be there. I have not figured out how to navigate that well here yet. Have a great day!!

          • Yvonne March 13, 2013 at 6:56 am #

            p.s. just curious…what time of day do you think it is best to take probiotics? No hurry…thank you.

        • Yvonne March 23, 2013 at 2:11 pm #

          Hi Bev,

          Just wanted to follow up and let you know the ones I use are: Natures Way Primadophilus Original 5 billion. Here is a link to an article that mentions bifido bacteria in relation to UC but doesn’t really talk about why it is best to avoid it. I know I have seen the same message somewhere here but still can’t find it. Have a great weekend! Yvonne
          http://www.livestrong.com/article/70867-probiotics-scd/

          • bev March 23, 2013 at 2:40 pm #

            Thanks Yvonne!

            Cheers
            :)

  4. bev March 13, 2013 at 7:16 am #

    Hi again Yvonne!

    First thing in the morning when you wake up, with water, on an empty stomach, and then try not to eat for at least half an hour afterwards.

    If that is not possible, then take it at bedtime, with water, but at least two hours after you’ve eaten anything. Or, if your stomach is not empty at bedtime, get up at 2 or 3am and take it then.

    Bottom line, probiotics work the best when your stomach is completely empty and you don’t eat anything until they travel to and have reached the colon…at least half an hour…

    Cheers

  5. Teanna
    Teanna March 23, 2013 at 8:02 pm #

    Hi Yvonne! Just saw your post and thought I’d give you some advice on that horrible joint pain! I was 13 when I was diagnosed, and I had horrible joint pain.. I couldn’t move my left arm at all because of my shoulder, I couldn’t sleep from the pain, and I got a wheelchair in the hospital because I could barely walk from the hip pain. Luckily my symptoms resolved fairly quickly and with them the joint pain. However I’m in a flare again (9 years later) and I’ve got the dreaded joint pain again.. it’s been in my wrists, shoulder, knee, hips.. and it’s completely debilitating :(

    BUT I started wearing a hologram bracelet called EFX. It seems to mainly be marketed to athletes (supposed to improve balance, strength, flexibility), but it can also help with joint pain/inflammation. I also bought extra holograms, that way if the joint pain starts in my hip or knees I can tape them directly on. I’ve found them to work wonders! As soon as I feel the joint pain on I immediately tape the holograms on. The pain is usually gone in a day or two, and it never gets to the point that it did before. It might ache a bit, but I just put them on my wrists the other day and I could still completely function (the last time both my wrists got joint pain I couldn’t do anything.. I needed help showering, dressing.. I couldn’t even lift up my phone!!).

    Here’s the website if you’re interested in reading about them, there’s also some great testimonials! http://efxusa.com/

    Also regarding BMs during remission, I know for me everything goes completely back to normal. 1-2 BMs/day, completely formed, no urgency/blood, and best of all I can eat whatever I want!

    Hope all is well with you and you’re starting to feel better!

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