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Medication Domination

Hi, my name is Mandy and I’ve had UC for about 3 or 4 years now. It’s been a rough go of things but while my Gastroenterologist believes me to be a moderate to severe sufferer, I have not had any surgeries (knock on whatever happens to be around that resembles wood), and I am “medication compliant” as they say, which basically means out of desperation I obey the doctors.

Some more about Mandy:

I try very hard to be active but migraines and my gut can make it difficult. The time in between my twice daily enemas always seems to be shorter and shorter and I need to be home for that. My family would say I’ve always been somewhat sickly for most of my life with something or the other.

Symptoms:

I have mostly the constipated kind of UC and while my blood is mostly controlled, the mucosa is not all that controlled currently.

Medication Domination

Wish people knew more about this disease, Ulcerative Colitis. Since I was diagnosed my whole immune system has gone haywire. My MIGRAINES have become unruly and more frequent than ever. The theory is that my body is busy aiding my gut and while my body may have been able to control the migraines before, now it’s not. So I take a whole wack of migraine preventatives that don’t work so well. I am currently on Salofalk pills and enema, Cortifoam enema and Prednisone 30mg. I’m not taking Probiotics because a naturopath said it would counteract the effects of the Prednisone being a immunosuppressant. Anyone know anything about that?

When I was first having problems, my GI guy put me on an all white flour, low fiber diet. That made me sicker and put me in full flare. I think that is called a low residue diet? Thanks GI guy! You told me I had Annusitis and didn’t catch my Ulcerative Colitis until 2 years afterwards!

Now I eat tons of cooked/steamed veg, minimal raw veg as it hurts my gut, and take Metamucil 1 tbsp/day. Carbs do not bother me and I find when I don’t have them, my stomach feels raw and “uncoated”. Anyone else find that?

Questions:

  1. Anyone else get migraines with UC?
  2. Anyone else take two enemas a day?
  3. What do people do to combat constipation long term other than veg and whole grains?
  4. Anyone else find it difficult to exercise because of increased muscle/joint pain?
  5. What about Probiotics and Immunosuppressants?

Again, currently taking:

  • Prednisone 30mg for another 6 weeks for UC and migraines
  • Salofalk 6 pills per day
  • Cortifoam enema in the a.m.
  • Salofalk enema in the p.m.

I’ve got Asthma, Hypothyroid, Migraines and muscosketal issues with increased inflammation in my body. It makes it difficult to exercise as most things increase muscle pain.

written by Mandy B

submitted in the colitis venting area (add your story here)




cortifoam, prednisone, salofalk

9 Responses to Medication Domination

  1. suzie b October 15, 2014 at 8:16 am #

    My daughter has u c. We blend a fruit pea protein smoothie for her it gives her the best poo. If you don’t have a problem with fruits you might try a morning fruit/veggie fast every other day. Peel your fruits or even blend them for better digestion. The idea is to fast for 15 hours from your last evening meal. Sleep, have fruit during the fast for breakfast and morning snack and then go back to your routine. This gives your body a rest from digesting protein, and the soluble fiber moves things along nicely. Drink tons of water and stay away from wheat! Alkaline foods may be helpful. Brown rice may be good for you as well. Good luck!

  2. Adam
    Adam October 15, 2014 at 8:18 am #

    Hi Mandy,

    Thanks for sharing your story. I guess my first gut reaction to your story is have you ever tried actually eliminating carbs (or maybe I should say all grains) from your diet completely? You said that the diet the doc put you on threw you into a full on flare. I’m guessing that was filled with white bread and things similar. But you also mentioned that carbs don’t bother you. Ok, so what types of carbs are you eating right now?

    The reason I ask is because it is clear from your story that you’re not in remission, so I’m wondering if you are going through some of the same stuff I went through 6 years ago before I completely removed grains from my diet.

    Also, as for your probiotics question, you’re in luck because right now we are in the middle of the 2nd Probiotics Survey with users of the newsletter. This survey started on Monday and as of right now there are over 400 responses from UC’ers who use the site. I’ll be publishing the results from that soon so get on the newsletter if you’re not already and you’ll be first to see the results. They are pretty incredible from what I’ve read so far.

    No matter what though, you still even after all you’ve been through seem to have a positive attitude. And that no matter what is the MOST important thing. I hope some others here will be able to give you some more pointers or ideas to help you answer your questions. And also, feel free to check out the joint pain survey, which can help address your questions about that stuff. Here’s that link: http://www.ihaveuc.com/99-person-colitis-joint-pains-survey/
    Best to you and thx so much for sharing with us,

    -Adam

  3. Kelly October 15, 2014 at 9:02 am #

    You definitely have a lot going on there. I have D, not C, but I do have joint pain at times. My GI says your UC inflammation is often mirrored in your joints. Yay for us. I don’t have any knowledge of migraine meds, but do any of the ones you are taking have GI side effects? Maybe you have already explored that possibility, but it’s just something that kind of “stuck out” at me when I read your post. Sometimes subtracting something (in this case a med that really isn’t working for you anyway) is better than adding more to the mix.

    Again, I’m no expert on medication and I’m not recommending you stop taking anything without your doc’s help, but it may not hurt to look into everything you ingest for possible effects. Food is important too, of course. Sometimes simplifying things just a little gets positive results. Good luck.

  4. KimberlyHI
    Kimberly October 15, 2014 at 11:19 am #

    Hi Mandy,

    Wow that’s interesting what your doc says about probiotics, I guess I can see his theory but not sure if it is correct or not. I have been on a 50 billion cell probiotic for awhile now, and I was taking it with Remicade which is also an immunosuppresant. I didn’t have issues where I thought the probiotic was making the meds not work or anything. In fact I keep taking them because I think they make a difference and luckily now I don’t take the remicade anymore (insert happy dance here) :) But I guess since probiotics help improve your immune system and prednisone suppresses it he thinks they will counter each other…hmmm.
    Well I wanted to say I also deal with one thing after another as it sounds like you do. And of course my issues are all related to immune system and stress or diet. I also have hypothyroidism among other stuff (but no migraines thankfully, sorry you have to ddeal with that). It seems like every time I turn around I have some other chronic incurable disorder, and I guess my main thought is that I need to learn to deal with stress better-do you have issues with this too?
    I seem to do ok on grains but not as much with fruits and veggies, can’t really do nuts too much or popcorn and stuff like that, have to do low fiber. Right now I am doing pretty well on just 1 canasa at night, 4 lialdas a day and the 50 billion probiotic.
    Good luck and get well soon! I think once you get in remission you may find it easier to exercise and stuff but it is hard when you don’t feel good.

  5. Emily October 15, 2014 at 12:40 pm #

    Hi Mandy-

    I am never constipated. Ever. Sorry I can’t help with that. I would only suggest to make sure you’re drinking enough tea, water, and other fluids. It is really easy to get dehydrated with ulcerative colitis and that can make constipation worse.

    Food wise I’d suggest a food journal. Keep track of what makes you feel good, eat more of that. Eliminate things that don’t make you feel good. It may just be trial and error for a while, but eventually you may see a pattern.

    I use two enemas a day when I’m in a flare. One am and one pm. I usually taper down to one (pm), will stay on that a while, and then (in the past) have been able to taper off of that while continuing oral medications.

    I always take probiotics. I am on an immunosupressant medication and I continue to take probiotics. I’m not a doctor and I don’t know if they cancel each other out, but I feel that probiotics help keep me in remission. I feel that they are good at promoting overall health. I refuse to give them up. I also take a good multi-vitamin and omega-3 fish oil.

    I exercise a lot. A combination of cross fit, boot camp, yoga, pilates, barre, and HIIT type workouts. I go crazy without exercise. I am not able to run anymore (upsets colitis). Actually cardio in general can be hard. My joints hurt a lot sometimes and I try to be mindful of that (make it a yoga/pilates day or take it easy with the intervals). Maybe you could try walking or swimming or biking to see if that is okay for you? And don’t sell gentle yoga short- it can be a really great workout. Look for a hatha class or integrated- not a vinyasa flow or hot class- those tend to be super strenuous. When I first started working out I hired (it was expensive) a certified personal trainer. She was mindful of my limitations and really helped me get started without getting injured.

    Hope you’re feeling better soon!

    Emily

  6. Linda October 15, 2014 at 4:26 pm #

    Hi Mandy, after reading your story, I noticed that since my ulceratis colitis is acting up again, I have some really bad headaches. They hurt my eyes also. I never associated these with my colitis until you mentioned this. I do take advil when these come on. It works for the headaches, but agravates the colitis.
    Good Luck with your outcome.

  7. Chris M October 16, 2014 at 4:47 am #

    Hi Mandy,

    I have been a migraine sufferer since I was quite young. Do not use any ergotomine-based migraine meds (Ergodryl, Cafergot) as these will increase any bleeding. I use the triptan – style migraine medications – like Imigran (out of patent so cheap) and I especially use Relpax as although it costs more is very effective.
    regards, Chris

  8. MizzM October 16, 2014 at 11:06 pm #

    Hi Mandy,

    I was diagnosed 2 years ago, and was on prednisone for about 6 months before my symptoms got under control. I am taking Lialda and 6MP, which I am not happy about, but they are working. If I miss taking my pills for even a couple of days, my symptoms start to come back. I tried some diet modification, but did not find that any foods contributed significantly, so I think my problems are more likely stress-related. I do take a 50 billion probiotic (Renew Life Ultimate Flora Critical Care), and I think it is helping to offset the immunosuppressant properties of the prescription medication, as I have not had a common cold in 2 years, even though I have 2 kids who get sick 5 or 6 times a year. (I do tend to be a little Germophobic when they are sick–making everyone wash their hands incessantly, and wiping down doorknobs and lightswitch plates obsessively with bleach solution, LOL! My mother had rheumatoid arthritis and got bronchitis and pneumonia all the time when she was taking methatrexate and Humira.) When I first started taking 6MP, I had joint pain, but that went away after a couple of months. I do try to avoid nuts, fruits and veggies with seeds, and raw vegetables because they can be hard to digest, and I also avoid sugar, caffeine, dairy, and anything carbonated. I also cut back on carbs, red meat, and bacon. I still eat meat, but instead of buying lunchmeat that has a lot of preservatives and nitrates, I buy turkey and chicken breasts and roast them myself, then slice them up or cube them for sandwiches/salads. I also don’t eat any canned soups, only homemade. I am a foodie at heart, so following a restrictive diet is torture for me! I take a lot of supplements (Omega 3s, B12, and a “Liver Detox” pill that has milk thistle, turmeric, and artichoke leaf) to try and offset the damaging effects of the 6MP and Lialda. So far, so good. I also try to use turmeric, ginger, and cinnamon in my cooking. I kind of combined the Krohn’s/Colitis diets with an Anti-Inflammatory Diet, but, to be honest, I think the medications have done more to get me back on track than the diet. One thing you will soon learn about Colitis is that it is a very “individualized” disease. What works for one person won’t work for another. I have used this website to sort out all of the different approaches to treating the symptoms, tried everything, and then settled on an approach that seemed to work for me without making me crazy! Also, have you tried gel ice pillows/eye packs for your migraines? I know people who get some relief using those. Good luck to you–I hope you are able to find a system that will minimize your symptoms or at least make them more manageable!

  9. Kara S. October 23, 2014 at 5:43 pm #

    Hi I am Kara. I have had UC for 3 to 4 years. I have had 4 flare ups since i was diagnosed. I have tried probiotics with my regular medication and i see no difference when i take it or not. Well, that was probably not much of help answering that question, but I hope all goes well.

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