New to the Forums, Old to UC

selita masked
Here I am!

I am a 58 year old mom of two, Mimi of 2 and a dog mom. I have had UC for over 30 years and it alternately flares and then goes into remission only to return again for reasons I have yet to uncover.

something interesting about me: I am a college student, trying to finally finish my degree.

Current Ulcerative Colitis Symptoms:

I am currently in a flare. The abdominal pain is the worst part, this time. The frequent and urgent trips to the bathroom make me scared of car trips. The blood is always there but maybe less this time, nausea, and diarrhea. I know sleep is important but between the nausea, abdominal pain and frequent bathroom trip, I am not getting much sleep at all.

My Story:

I have had UC for over 30 years. When it flares i use mesalamine suppositories. I take IBGard for gas and bloating. My gastro doc recommended Benefiber. I took it one night and spend the night in pain and hardly slept at all. I’m holding off trying it again until this flare settles down some. I am always seeking ways to head off these flares but as of yet, despite keeping logs, I can’t nail it down.  

UC is miserable when it flares and knowing that I will have it forever makes me sad. Anxiety usually come with the flares and that make it even worse. I have a great doctor but all the newer better medicines are ridiculously expensive to just “try” so I am stuck using the same thing I always have and it doesn’t always work, like this time.  

I usually get a colonoscopy every 1-2 years – those are now just a good nap for me but the prep, good grief, can’t they come up with a better way to do that? Id like to try the scans but again it is all so expensive and insurance doesn’t want to cover anything. 

I guess for me, the biggest concerns are not going on road trips (which I love). My anxiety keeping me wound up in a flare, or having a flare so bad that I have to be hospitalized (as of yet, I have never had to do that in 30 years) but especially now, in the time of the pandemic. 
I am hoping to learn from all of you – what do you do? How do you still enjoy all the things you enjoy when NOT in a flare? Is there something I can try or do that won’t cost me a small fortune? I would honestly be happy to just lose the abdominal pain and the frequent bathroom trips, but then who wouldn’t?

medications/ treatment ideas:

I use heat and IBGard to help with the abdominal cramps. I have stopped drinking coffee as I discovered that was triggered me badly (10-20 bathroom trips before noon). No other ideas how to calm a flare.

submitted in the colitis venting area





4 thoughts on “New to the Forums, Old to UC”

  1. Hi Selita,

    Thank you for sharing your story with us, and I hope you can get the flare controlled quickly to get on with your life.

    I too found myself in a flare about ten months ago and it was one that seemed to come on fast and nasty out of nowhere.

    Full on bathroom visits that took both hands to count and all the other usual ugly and painful symptoms.

    What worked wonders for me, and was recommended by two GI docs and the nurses at the hospital in Spain was Budesonide. Sometimes called UCeris as another trade name.(but the same thing).
    My GI back in the US ofA told me he would recommend it as it tends to have much fewer side effects compared to prednisone… sounded good to me.
    Anyways, rest is history, within just a few days I felt incredible relief with no side effects noticeable.
    So, worth talking to your doc about. Here is a link with reviews from other users of the site:

    https://www.ihaveuc.com/uceris-reviews-a-new-colitis-medication/

    Also, going real basic on foods is something that many people have had success with for escaping a flare up of colitis.

    I like going to a simple chicken soup for a couple meals a day, chicken and some carrots and a bit of alt to keep it simple. Sounds boring of course, but simple can work to get things in a better state.

    I hope you can turn the corner soon, and that’s really a great thing to have a GI doc you like and get along with.

    Best to you,
    Adam.

  2. Hi Adam, thank you for your response. My doctor has recommended budesonide – he called it in and when I went to the pharmacy I was told it would be over $900 (I even have good insurance) Tried using a discount card and it was still over $400. I have been told by my GI doc that its a great medication – I may have to save up and try it. I just purchased a supplement that is a Zinc blend – waiting to see if it does anything. This is such a frustrating condition. What works one time, won’t work the next UGH.

  3. Dear Selita
    I don’t comment on this site often but saw yours today & thought I would.
    Had UC for about 12 years .
    I initially was given prednisone & IV steroids. The side effects of those nearly did me in . I weaned off for 3 months & eventually came off all of those .
    I had had a bad reaction with all the negative side effects.
    I’m against drugs unnecessarily so have researched & seen all types of alternative health practitioners.
    Acupunctute helped quite a lot . Need to find the right one though .
    Someone who is good who you feel comfortable with.
    I tried many therapies. For me the most successful in longer remission periods & less aggressive symptoms is Ayurvedic medicine. No side effects & only positive effects.
    I’ve been taking these daily for about 2 years. I very rarely take any drugs but occasionally if things are not improving quickly in a flare , I take small amounts of Pentasa for a few days.
    I also discovered that Budesonide foam is more effective & less harmful than the others & so I get a can & keep .
    The other most important things to keep it at bay are reduced stress levels & deep regular sleep . I eat a pretty healthy diet & no wheat but do eat spelt & other grains.
    Best of luck & good wishes.
    Sally

  4. Hello-
    I am wondering what Ayurvedic medicine(s) are you taking? And do you avoid any other foods besides wheat?
    My son has been using Uceris for about a week and it has not helped. He eats a clean diet (no gluten or dairy) and takes probiotics, and vit C &D), but going to have him go very simple, as Adam suggests. He has a colonoscopy scheduled this Tuesday and I am worried about him moving to a biologic – even more so with covid. Have already tried FMT as well.
    Any updates are appreciated.

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