Ulcerative Colitis Tips


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Just About Keeping Sane

Emma j fIntro:

Hi, my name is Emma. I have ulcerative colitis (left-sided) and was diagnosed in December 2014 after a colonoscopy. I initially thought I’d be able to pop a few pills and get back to normal life, but unfortunately that’s not turned out to be the case. But, I am positive about getting healed with the right combination of drugs and diet. I live in South London.

Some more about me:

I am/was really active before coming down with the disease. My main pleasures: cycling, yoga, bouldering, traveling, cooking/healthy eating… I’ve had to (hopefully temporarily) give some of the active stuff up while I get on top of this thing. Fortunately, I’m also a big fan of sleeping, which I’m doing plenty of at the moment!

Symptoms:

Night sweats, mouth ulcers/swollen tongue, mucus/blood, diarrhea, urgency, fatigue/anemia, episcleritis (aka the evil eye), aches and pains. When I’m tanked up on Pred, I manage to keep on top of things, but as soon as I start to lower the dose, it all comes rushing back. I’m down to 10mg at the moment and getting to work in the morning is something of an ordeal (lots of jumping off the bus to find the nearest loo…)

Just About Keeping Sane

My current medication isn’t working (Mezavant and Predisnolone.) The Pred is keeping me in one piece in the sense that I “look great”, as everyone likes to tell me, but isn’t getting me into remission. Meanwhile, my blood markers are getting increasingly worse. I basically have red warning exclamation marks next to every blood result at the moment!

The consultant is moving me onto Azathioprine, but I’m also due to do (hopefully just three months of) a biologic to kickstart me into remission.

I had the preparatory blood tests for the Azathioprine yesterday. They took nine vials and reduced me to a quivering wreck. I’m not great with veins + needles.

That being the case, I was hoping to get a bit advice about which biologic to choose. They’ve said I can have remsima/infliximab or humira/adliminab, or possibly entiyvo.

I’ll be honest, I’m completely freaked out by the idea of the infusion route. I just don’t know if I can sit there with a cannula in my arm for two hours, but I have read that remsima/entiyvo may be more effective than humira.

It’s not ideal, but I think I would cope better with the humira injections emotionally/psychologically. I had to give myself belly injections (with clexane) when was on crutches recently, as my platelet levels were so high. It wasn’t great, but at least it was over quickly. On the downside, I don’t have a lot of spare flab on me to inject into, although the Pred has helped a little in that regard!

Anyway, I’d be really grateful for people’s views – especially from those who share my phobia. Is it possible to get over it!?

Otherwise, I’m just carrying on as best I can. I work freelance, so am lucky that I can work from home three days a week. This is great in the sense of avoiding the stress/possibility of accidents, and I can take naps when needed, but I’m worried about turning into a recluse if things don’t get better soon!

My family/friends have been great, but they don’t really understand. if I’m honest. I looked terrible on diagnosis, but “normal” now, so I guess it’s logical that they would assume that I am better… Hopefully, I will be though when I start on the new meds :)

Medications:

Mezavant – two tablets daily
Predisnolone – started on 30mg, then tapering down. Currently on my third course.

written by Emma J

submitted in the colitis venting area




mezavant

13 Responses to Just About Keeping Sane

  1. Adam
    Adam April 24, 2015 at 10:12 am #

    Hi Emma,

    Thanks for sharing your story with us, and I wish you the very very best with getting this under control soon and moving on to what you’d rather be doing…AND…keep your head up cause those days will most certainly come for you too.

    I have myself some experience with both Remicade and Humira and maybe this will be of help to you.

    LIke you, I am totally freaked out by needles, and although I’ve never been hit with a bullet, I’ve told numerous nurses in the past while giving blood that I’d rather be hit with one than get poked with a needle. That said…there’s quite a few folks in the medical world who are experts at inserting IV’s and needles to the point where you just about wouldn’t know it was happening(big thank you to them:)))

    So back to humira and remicade…the whole idea of an infusion spooked me out too, but it really wasn’t that bad at all. Yeah it was a bit strange laying down in a hospital bed type of thing and watching five or six or more others getting infusions in the same room, but when it came down to it, they got the IV in super quick, then let me rest a while and the following two ish hours went by pretty quick pain free. I even got up to take a pee and walked with the whole apparatus with no issues. Yeah,, might have been a bit tougher if had the need to drop a load, but that wasn’t the case. AND, the Remicade ended up working wonders within a day which was awesome. Unfortunately it was short lived as is the case for some UC’ers and I next moved to Humira.

    The humira for me was actually more of a freak out session. Reason being, I had no real idea of what it was going to be like. I was able to mentally compare the infusion to a needle/blood test…but the Humira I had no clue how that would feel/go.

    So I did the countdown from 10-1 with the nurse the first time (and second and third of the loading dose) and probably started over a few times…It was all a bunch of built of freak-out for no reason though. Humira is just about painless. Yes, you do feel it a tiny bit, but it’s no real big deal. The tiny tiny tiny needle just punctures the skin, we’re talking milimeters at best.

    If you are interested in reading other UC’ers reviews of these meds, please feel free to do so. That’s why they are here, and here’s the links to those pages:

    Humira Reviews:

    http://www.ihaveuc.com/remission-rates-data-from-anti-tnf-treatment-an-eye-opener/

    Remicade Reviews:

    http://www.ihaveuc.com/remicade-reviews/

    And even a few reviews for the newest of the three Entyvio/Vedolizumab:

    http://www.ihaveuc.com/new-ulcerative-colitis-medication-vedolizumab/

    Once again I wish you the very best in getting off the prednisone steroids, and moving on to some good times. I think for most UC’ers the first year is often the tuffest, and it sometimes takes a bit of time to get a treatment plan whether it’s meds, diet or other in place to get the symptoms under control, but there is a super good chance you’ll get there.

    Please keep us posted on how things progress for you:))

    And a BIG WHAT’s Up to S. London:)

    Adam

  2. Lucy April 24, 2015 at 9:11 pm #

    Hi Emma. Sorry to hear about your UC. I was diagnosed 31/2 years ago. I have never been on meds and have maintained it through changes in diet. I would suggest seeing a doctor of naturopathy if possible so that you may learn more about what to eat and supplements that will help restore your body to a more natural state as well as help heal the colon. I have given up gluten and dairy and found it to be incredible helpful. I also practice meditation which comes in handy during a painful flare-up. Eat mainly veggies and fruit, organic preferably.I hope this is helpful.

  3. Jay Jones April 25, 2015 at 4:07 am #

    Hi Emma,

    im sorry to hear how unwell you are t the moment. I am currently doing a FMT trial I would suggest you look into doingvthis also ASAP. You dont need to o to a clinic you just need safe donor poo. It sounds groce but im two weeks in and its working wonders.

    Jay

  4. Andy April 26, 2015 at 6:03 pm #

    Check out taymount clinic for fmt trials, it’s close to London. Or DIY…

  5. Liz April 27, 2015 at 10:19 am #

    I’ve tried Humira, Remicade, and am now on Entyvio.
    Humira was easiest to schedule (do it yourself at home) but it was like giving myself a bee sting, and i HATED it. I didn’t have any side effects, and it might have helped my colitis a little (i had just had a baby, so to many factors to say what was causing improvement), but we discontinued it and moved on to Remicade.
    Remicade was tougher to schedule since it’s a bigger block of time out of your day, but it was less stressful for me than injecting myself with the humira. My biggest concern was potential side effects, and whether the bathroom at the infusion center would be occupied when i needed it! The infusions themselves made me very sleepy, and i had/have a small amount of psoriasis that we think was caused by the remicade, but it’s not bothersome.
    Entyvio allegedly has no side effects, and i’m about 2 months in and so far have not experienced any side effects. The infusion is much faster, you only have the IV in your arm for 30 minutes, though i’m usually at the center for more like 60-90 minutes since it takes them longer to mix up the medication and i’ve been unlucky schedule wise. But much shorter than the remicade! I’ve been on it for about 8 weeks now, and have seen a lot of improvement in the past few weeks, so we are hopeful that it’s working :) Unfortunately, Entyvio has a reputation for taking longer to start working than the other biologics.

    • Emma J
      Emma J April 27, 2015 at 11:24 am #

      Thanks Liz, that’s really helpful. It’s such a nightmare to go through all that and then them not even work!

  6. Melanie April 27, 2015 at 10:38 am #

    Hello Emma,

    First, let me say I completely understand your “ordeal” getting to work each morning, I have the same issues.

    Second, I did want to say that I am currently on Remicade. I have been on it for about 6 months.

    I initially was scared to death to start the infusions. I was scared of the side effects, the procedure….everything!

    I will now say that currently I have no known side effects from it and initially I would walk out of the procedure with more energy than when I walked in.

    I now view that 2 hours every other month among the most relaxing as I bring my Ipad and watch a movie and lay there for 2 hours and get a mandatory break from my job and my life for a couple of hours. ;-)

  7. Richard April 27, 2015 at 4:35 pm #

    Hi Emma,

    Sorry hear about your difficulties with UC and getting of the pred. It can be a real challenge and frustration as it’s pretty unpleasant stuff to be on. I’ve been on Humira for over 5 years for Ank Spond and after the first few times injecting yourself is not too bad, particularly if you leave the pen out of the fridge for 20-30mins to warm up first. It is a miracle for the Ank Spond but no silver bullet for the UC unfortunately.

    You say you have left side UC. I’ve had a pretty tough 12 months getting of the pred myself and a few months ago my doctor suggested I try salofalk enemas as it provides relief to a lot of people with left side UC. At first I was totally grossed out and a little horrified at the thought of administering it but thought it was worth a try as the pred was sending me loopy (hungry, not sleeping!!) and I didn’t want to start mixing Humira with things imuran. It has been a life saver and for the first time in a long time I think I have the UC under control with a treatment that, while not particularly pleasant to administer, works effectively with few side effects. What’s more you can use it daily or less frequently if symptoms are managable. If you can bare the thought of doing this speak with your doc. Good luck.

  8. Beth E
    Beth April 27, 2015 at 7:37 pm #

    I started Prednisone for my flare in the hospital in January. It caused my body to stop digesting and absorbing meds or nuturients. Of course we didn’t know this until my dose had been increased to 60mg and I kept getting sicker and losing weight. I was put back in the hospital in March for ten days. It was there they gave me my first Remicade infusion. The blood and diarrhea stopped the first day after my infusion. I am very happy I was given this drug. I was in such pain and so sick that I was not able to get off the couch for almost three months. I have my life back and was actually able to go to work today for the first time since Christmas. I hope you find relief with which ever drug you choose.

  9. Dean Murphy
    Dean May 4, 2015 at 7:32 pm #

    Hi guys, so I only got diagnosed with uc in February so this all very new to me. In April things got so bad out of nowhere and ended up spending 3 long weeks in hospital. The GI doctor said I was so bad he nearly considered taking my bowel away. I’ve been out of hospital now a few weeks and will go for my third infusion of infliximab on Friday. I’m still on the pred along with my other meds like asacolon, 6-mp, pantup. I’m down to about 6-8 bowel movements a day which is far better that 20-30 wear I was at. This still stops me going back to work as when I have the urge I need the bathroom right away! So what I’m trying to find out really how have others responded to infliximab? Will I ever have a normal bowel movement again how long will it take to get into remission. These last 2 months have been so frustrating and sometimes I wish I had the operation. Thanks again for reading this guys and any help or ideas would be much appreciated:)

  10. Tom
    Tom May 6, 2015 at 5:39 am #

    Hey Dean

    Welcome to the club. There’s lots of support out there and on this site so never feel alone.

    Just to give you a quick overview of my story. Basically meds weren’t working, 6MP and couldn’t get off Pred so i opted to have surgery. I made my stoma permanent as I didn’t want a Jpouch but everyone is different. Before I made the decision to have surgery, infliximab was the next drug to be put on and in my research I found out that most people, it takes at least 3 infusions to feel better and get back on the road to recovery. I chose not to go with infiximab and went the surgery route, but as you are about to have your 3rd infliximab infusion, i suspect you’ll be feeling alot better soon. Stay in touch and let us know how you’re getting on.

    Tom

  11. Dean Murphy
    Dean May 13, 2015 at 7:44 am #

    Hi Tom,

    Thanks for the support! So on Friday I had my third infusion of infliximab:) . The morning before I had it I felt like I was having a flare up becau I was due the infusion. After having my infusion I didn’t see any difference over the weekend, so I taught it wasn’t working :( however since Monday there has been a dramatic improvement! I’m currently down to about 4 bowel movements a day. I no longer have to run to the bathroom first thing in the morning and I am also pain free! I also feel fantastic no more strange bowel or tummy noises and I’m even thinking about going back to work :) With today being Wednesday I haven’t even used the bathroom yet today. I am so thankful with infliximab and would encourage anyone with UC to try it! I will say that when I was in hospital I felt miserable and taught it was the end of the world, however I will encourage anyone that’s on infliximab to be patient and hopefully you will find the road to recovery like I am. I hope this helps and I want to thank everyone on this and my family for the great support

  12. Tom
    Tom May 13, 2015 at 2:56 pm #

    Hi Dean

    That’s amazing news! Made my day. I’m recovering from having my anus removed lol (even i can’t say it with a straight face yet) so it’s refreshing to hear good news!

    Really happy for you and hope things continue to improve and you maintain remission for a long long time.

    Stay in touch

    Tom

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