Ulcerative Colitis Tips


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So Happy to have Found this Website!

Hopeless-with-colitis-until-ihaveuc

Intro:

I have had UC for 3 years. It has profoundly changed my life. I had to retire early from a job I loved, but I am able to do some volunteer work through my computer.

Some more about Jo:

I liked to spend time making dinners and having fun with my family and friends, as well as bike, kayak and go out dancing. That has ended. A month ago I tried to go kayaking on a very easy to paddle, still lake. OOOPs – I ended up in the bushes on shore multiple times!

Only my closest friends call anymore. When one keeps turning down invitations- they stop coming. I tried to explain about UC but when they hear ulcer they all start giving me advice about how to reduce my stress! Which of course adds to my stress because for 30 years I have conducted many workshops on stress reduction, mindfulness, breathing techniques, etc. Hello people- I know all that stuff! UC is not a stress ulcer!

Symptoms:

Currently I have severe symptoms and have only left home once in 3 weeks and that was for a trip to the ER due to dehydration and a UTI infection. I had no experience with dehydration and did not understand why I was even more exhausted, weak and foggy. One of my friends is an RN and got me to the ER. I was beyond caring what happened.

Now I am drinking lots of water and trying to find food to eat. So far mashed potatoes and Jell-O are my go to foods. UGH.

BTW- my original UC started about 3 weeks after a routine colonoscopy. I had a healthy colon. After I saw blood in my stool, and the other symptoms began – my GP sent me back for another scope. The Dr. was surprised at how much my colon changed.
Can that awful colon prep bring on UC?

Jo’s Colitis Story:

UC has made me into a stay-in-the-house and watch TV person (we got cable for the first time).

I have been with 3 doctors – one retired, one was just uncaring/nuts, the current one is working to help me. Not one of them thought dietary changes were needed or that probiotics might be helpful. I did everything they asked me to do: two different enemas, Asocol, Lialda, Mercaptopurine, etc, etc. Many courses of Prednisone which caused bone loss, hair loss, eye problems, and the oh so attractive moon face. Nothing works for very long.

I recently began Humira after weaning off Prednisone. It worked for about 3 weeks then the bloody pooping began again. I had to stop the Humira due to the antibiotics for a UTI, and I am back on Prednisone again. Looking forward to my face puffing up one more time.

My family tells me that 3 years is too much to be ill – just take out your colon. I am asked “can I do anything for you?” Yeah – cut the lawn, walk the dog, clean the kitchen, anything but give me advice on meds and food and stress, My closest friends get it that I am doing the best I can under difficult circumstances. My family wants me to be better right now. Each time I try a new medication and it fails I can hear the frustration in their voices. They want me to go to Mayo, The Cleveland clinic, anywhere that will cure me. They want me back the way I was – just like I do.

I was feeling very hopeless until I stumbled across this website. Thank you Adam and thank you to all who post! It is wonderful to be able to read all the posts and find people who get it. The humor is terrific. Borthers and sisters in poop!

Medications / Supplements:

I am really concerned about loosing my colon. My brother had colon cancer and “is bagged for life”. He has a great attitude and a somewhat active lifestyle. He told me it is better than dying.

I would like to find a better way to heal my colon and even if I had a mild case with flare-ups it would be okay. I am looking at other ways to treat UC and have found some very interesting posts. It appears that there is not one way that works for every one. One friend keeps pushing the McDougal diet- has anyone done that? Has anyone gone vegan with any success? I ordered the VSL#3 and hope to start it as soon as it arrives.

Right now I am just happy when I can make it to the throne without wrecking the rug and my clothes, My dog is always startled as I hurtle to the bathroom – she thinks it is time to play so she trots along behind me excitedly wagging her tail only to be disappointed the 20th time that day.
This illness isn’t just hard on me it has effected my entire family. No kids want to see their Mom this ill and unable to participate in family activiies- even my birthday.

written by Jo M.
submitted in the colitis venting area




23 Responses to So Happy to have Found this Website!

  1. Adam
    Adam August 25, 2014 at 10:50 pm #

    Jo,

    You asked a great question about the colonoscopy prep and if that can bring on UC. I am not sure about that specific question, but FOR SURE, many people with UC report major setbacks and even flare ups that coincide directly to the time after having a colonoscopy. I myself have noticed that both the colonoscopy procedure as well as the sigmoidoscopy procedure are likely to lead to symptoms become more active.(Not great news, but at least its not a mystery). If I was you, I’d highly consider seeking out a new doctor who is open to diet treatments for UC. There’s a big difference between a GI who is from the western medicine world who “accepts” his/her patients treating their UC with diet, and a GI who thinks diet treatments are all a joke.

    Each day(yesterday especially:) that goes by, I’m proving to myself time and time again that diet plays a bigger role in UC treatment for many than GI’s have previously led their patients to believe.

    thanks so much for using the site, and I wish you the VERY BEST no matter how you decide to move forward, and lastly, you will for sure get back to feeling normal and back to a normal life soon. You’re getting through the hardest part right now, but it will be over shortly.

    -Adam

  2. Emily Rose Rogers
    Emily August 25, 2014 at 10:53 pm #

    It’s so sad to hear about this, and I’m sorry for te trouble and pain your going through. I was on prednisone about 8-9 years back and I was taken off due to lack of working, than I was out on a shlew of other meds until I was transferred to Hartford children’s and have my current doc. She first out me on Asacol, than Asacol hd with enemas, after neither worked she put me on remicade which did work for the first 7-8 months than I started getting suicidal so she stopped that, and now I’m on lialda. And was working fantastic for a while and now the bloody stool has come back with the slimy mess and bathroom runs every day hoping to not mess on the floor. My next apt is in November and I start school Wednesday so I am not in a good place right now. I’ve also been dealing with this since I was six. I have a story on here, but I’m used to it but it still sucks. I hope you feel better. Respond soon! :)

    • Joanne October 8, 2014 at 6:15 am #

      Hi Emily,
      I did not respond right away because I was very ill for 3 weeks and I ended up in the hospital for 30 days. I came out very weak and picked up C Dif and another infection while in the hospital. I haave spent much time sleeping / recovering.
      I have since gone to Mayo Clinic. They told me the dietary changes may or may not work – to try SCD or Fodmap diet: keep a daily food log and stay stricitly on it. I informed them that I startd VSL#3 probiotics.
      They want me to wean off my current meds: Prednisone, Azathioprine , be CDif free and add Entyvio (http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/vedolizumab-better-for-uc-than-crohns-disease-in-trials).
      In the mean time I am using the SCD diet, changing my care to a new GI, and working with my primary care doctor until I meet with my new GI next week.

      My friends and family are now on board with my care plan ( Mayo was the magic name that did that)!
      I hope you are better and have started school with improved health

  3. Matt C August 26, 2014 at 12:58 am #

    Hi Jo,

    I understand everything you’re going through as most of it happened to me and quite frankly, it sucks. However, I got to the point where I was unresponsive to medication and I had to have my colon completely removed. While this was a scary idea at first, it turned out to be the best thing that happened. I did have some unusual complications but I now live a completely normal life (as I was before I became ill) and haven’t had any problems since my final surgery, which was almost 7 months ago. I also had an ileostomy for an extended period of time and while it is not ideal, I could still do almost everything without any problems.

    I sincerely hope the medications/alternate treatments do work for you but if you ever elect to have surgery, I’d be more than happy to have a chat and answer any questions, etc.

    All the best!!

    • Joanne October 8, 2014 at 6:19 am #

      Hi Matt,
      thank you for this post. I have actually asked to meet with a surgeon to learn about my options, and in case I need to do this quickly. My brother agrees with you because he is concerned about all of the side effects of the meds.
      I am going to keep my mind open about all the pros and cons and will certainly contact you if surgery becomes my choice of treatment.
      Thank you for your offer!
      Joanne

  4. Larry August 26, 2014 at 7:59 am #

    Hi Jo, I have tried just about everything, and diet dose help.
    I ‘am trying to get to the point were almost everything I eat will have a positive affect on my colon but it’s hard, trying to control weight and nutrition. Adam is right about diet, but it’s a problem to get the right balance. I ‘am current under weight and don’t want to lose any more.
    so I have to try and find that balance.

    • Joanne October 8, 2014 at 6:25 am #

      Hi Larry,
      weight is an issue for me too. I hope I can find a good weight for me and keep my weight stable. I never thought at my age I would hope to gain weight – it makes me laugh just to type this!
      I am keeping a food log – partially just to hold myself accountable for what I put in my mouth. I have attempted to purge my pantry – but my family wants more than what I eat. My kids do not know that they have already frequently had cauliflower mashed potatoes (from SCD cookbook )…we just never told them. : )
      Jo

  5. Darlene August 26, 2014 at 10:34 am #

    Jo,

    I’m so sorry for your confinement because of this awful life “messer” UC! Hopefully you’ll soon find a strategy that soothes your colon (and your lifestyle).

    Per your question about going vegan…I don’t have an answer. My symptoms began while I was transitioning to a raw veggie diet. That diet now scares me even though I was/am the “health food nut” (it’s hard for me to put into practice ). During a flare plain chicken, plain white rice, plain mashed potatoes, bananas and that jello you love helps me, and plain ole white bread; otherwise I get too weak to function.

    Chlorella helps me tremendously. I take 2-1000 mg pills am and pm. It makes the bms have shape – somehow. This was a serendipitous find. After two days of taking these at the suggestion of a friend who didn’t even know that I had UC I noted a difference in the shape (of poops) and traced it back to the Chlorella. I take the Now brand that’s easy to find. The prescription that I take is Lialda.

    Wishing you peace, comfort and a return to normal.

    Darlene

    • Joanne October 8, 2014 at 6:27 am #

      Thank you for the post. I am better thanks to many meds . What is Chorella?
      Jo

  6. Bev August 26, 2014 at 4:31 pm #

    Perhaps colonoscopies and the preps strip the good bacteria from our colons…and if we are susceptible to UC at all, then, heck yeah, why couldn’t they cause UC to show up?

    After almost 20 years with UC, and 15 of those on meds…I don’t believe that meds are the way to go with UC. I am off all of the meds, and take a good probiotic, L-glutamine, vitamin D and astaxanthin. These work for me. The meds made the UC 100 times worse. My body rejected meds, I believe now.

    The longer you have UC, the more you will learn. Like Adam said…if your doctor ONLY believes in meds…it’s gonna be a long hard road for you. There are some better docs out there these days who are a bit more open to natural ways to treat UC. If you can find one of them, you’re on your way!! If not, you can trust in yourself. I do now…I never used to, but I do now!! Years of trial and error.

    • Joanne October 8, 2014 at 6:35 am #

      Bev,
      I have read many of your posts and you along with Adam and others have given me incentive to go pure SCD!
      I am learning how to use almond flour, my husband is interested in the receipes ( he is a better cok than I ) and I am hoping this gives my body the chance it needs to heal.
      While in the hospital the GI doctor told me that the more liquid the diet now – the better I will heal (he said it would be many manymonths before my colon is pink (not raw looking). He told me to drink Ensure Complete for 2 or more meals w/o any other food.
      Jo

      • Bev October 8, 2014 at 8:20 am #

        :)

        Life can be good again!!!

  7. Natalie August 29, 2014 at 10:27 am #

    Hi Adam!

    First of all, I just want to say how sorry I was to hear of your setback, BUT so glad
    you are doing so much better! You ROCK Adam!!

    I was diagnosed with UC 3 years ago (as of October) and,. since I have weaned myself off the Lialda and now taking probiotics and astaxanthin (as per Bev), I have been in remission for approximately a year and a half. I was supposed to have a colonoscopy last year but asked my GI if we can hold off because I felt so great. So, he told me I didn’t need to have it done but would need to have it done THIS YEAR. I am supposed to have it done in October. I am a nervous wreck, espeically reading how colonoscopies can cause major flare ups. Adam, since I am feeling so good, do you think I really need to have a colonoscopy at this time? I know how important they are for detection of colon cancer, but I am so afraid of a major flare up. Can you (or anyone else in this newsletter) advise me what to do???

  8. Bev August 29, 2014 at 10:37 am #

    Hi Natalie!!

    Man, how great is that remission??

    What a quandary…I am in the same place…only I am about two years past when I should have had another colonoscopy. There is no right answer. It’s all about your own choice. I wish that there was the perfect solution. On one hand, some of us are all too aware of what a colonoscopy can bring on, so to speak. On the other hand…there is the dreaded polyp factor. People who do not have UC are said to need to have a colonoscopy at 50 years of age, and then how often after that I wonder?

    I guess the fact is, is that you have to decide what is right for you. If there are no actual signs of cancer, would the average Joe go to get a colonoscopy? No, I don’t think so. Often over testing is done in the medical world. Testing that is not necessary. We, with UC, have the inflammation factor to worry about, which is a worry for cancer growth, however, if there are no signs of anything wrong at the moment…I say leave well enough alone?

    Just my two…

    Take care,
    :)

  9. Natalie August 29, 2014 at 11:14 am #

    Hi Bev!

    Thank you so much for your advice. Hey, I followed your advice before and have been in remission since!! I told Adam that he rocks…..so do you Bev!!! :) You are nicknamed the Queen of UC and that is sooooooo true!!!

    Since I am feeling so well (knock on wood), I really hate to ‘stir up’ things by having a colonoscopy procedure. I thought I would wait and see if my GI doctor contacts me. If not, I just may forget about it for now. On the other hand, I am kind of worried about NOT having it done. I just needed to know if EVERYONE who has a colonoscopy gets the dreaded flare ups. I hope I hear from Adam and other Uc’ers.

    Thanks again Bev!

    LOVE YA!!!!

    • Bev August 29, 2014 at 11:48 am #

      You are so great Natalie!

      I so know how you are feeling. It’s like a tug of war. I feel so good, so I know that I am just fine. Then…what if I have pre-cancerous polyps??

      I still maintain that if nothing is wrong, don’t rock the boat. I always believe that there will be some sort of symptom (like bleeding) if anything goes awry, because we UCers seem to know our own bodies so well. I do not want to ever steer you, or anyone else wrong, though. I would absolutely hate myself if there was something bad going on and someone thought that I said DON’T get a colonoscopy. I am not saying that at all.

      Another way to look at this is…you have attained remission on your own…if anything should get ‘stirred’ up after a colonoscopy, you can attain remission again Natalie! I know that I could. I am confident about that…so, if you do decide to have one, do not be afraid! If anything…you will have piece of mind, and you can get back to where you are, if necessary. Maybe, the UC won’t be triggered at all again!

      We all have this same dilemma. I may just have talked myself into having a colonoscopy!! I can get myself better if I have to because I know how to do it!! What a pep talk you’ve allowed me to give myself…thank you Natalie!!

      :)

  10. Natalie August 29, 2014 at 12:11 pm #

    Hey Bev!

    I LOVE your PEP talks! I really trust your decisions…..almost like a doctor…..LOL!! I guess I trust you because I was so very afraid to wean myself off the meds , but I I DID it and went into remission shortly thereafter. I am one happy lady today because of your advice. I guess I am still confused as to whether or not I should have the colonoscopy. If I could only hear from others, it would help in my decision. I am so thankful, that whenever I need advice, you are always right there with answers! You are my ‘Ann Landers’ Bev!! It’s not just me that you give all this great advice to. You are always trying to help ANYONE and EVERYONE. How great is that? WOW! You are t he best and such an asset to this newsletter and such an inspration to all UC’ers. Thank you so much!!

  11. Bev August 29, 2014 at 12:53 pm #

    Oh my goodness Natalie…you bring tears to my eyes. If only everyone could be like we are…in remission…

    OKAY EVERYONE…who can weigh in on Natalie’s post? Let’s get some more points of view here…because I would like to hear them as well. I may be in the market for me very own colonoscopy.

    Do you know what I’d really like to hear Nataile, after a colonoscopy…’wow, your colon looks a lot better than the last time’!!!

    Now that would be totally worth it…lol

    :)

  12. Prince August 29, 2014 at 9:20 pm #

    Hii bev
    I m prince Choudhary from India
    First off all I would like to thank to u because of your advice I m in remission from one year and I have uc from 2011
    Now I want to take your advice again because I Hv regular bleeding in my BM
    I m taking two capsules of vsl 3 and 5 gm l glutamine but I m not in total remission from 20days
    Please give me answer if I Hv to do anything else from apart of them
    Please bev this is my humble request to u g

  13. Bev August 29, 2014 at 10:01 pm #

    Hi prince Choudhary!

    Every so often, the very same thing happens to me as well. I just keep taking the same things that always work for me and eventually, the bleeding usually subsides.

    It could be that you ate or drank something that does not agree with your UC. It happens to me a lot….like if I eat popcorn, or too much wheat. I will see blood…sometimes for days. I just have to keep taking the probiotics and l glutamine religiously until I get back on track. You can always try a bit more l glutamine for some days.

    Stay happy…you will get there again!
    :)

  14. Prince August 29, 2014 at 11:03 pm #

    Thank u so much bev

  15. Prince August 29, 2014 at 11:18 pm #

    You are very nice mom for me

  16. Bev August 30, 2014 at 6:33 am #

    :)

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