Newbie Looking For Wisdom

Introduction:

I am a 41 year old mom, wife, and lawyer in Boston, MA, who was just diagnosed with UC in January 2012. I pretty much think of nothing but the UC these days.

Symptoms:

One loose foul-smelling stool each morning; some ominous tummy rumbling during the day; muscle stiffness.

Newbie Looking For Wisdom:

For the three weeks or so preceding my diagnosis, I was on the pot maybe 6 times a day – including middle-of-the-night trips – passing either bloody, loose stools or just blood. So yucky to even write about. About a week before the diagnosis, I started vomiting while on the pot. I landed in the ER where they gave me a CT Scan and a colonoscopy the next morning. The prep nearly killed me. I was admitted for 24 hours and had a blood transfusion. I left the hospital with a diagnosis of UC, on Asacol and Rowasa, with a prescription for Prednisone. I convinced my GI doc to let me try to get my symptoms under control with Asacol and diet before starting the Prednisone. Within about a week, I was down to one loose, bloody stool each morning. The blood tapered off and this week I have none. I’ve even gone two days without any BM at all. Currently (3.5 weeks out of hospital) I’m on just Asacol and the SCD diet.

Here are my questions.

First, has anybody had this kind of rapid healing

on the Asacol alone?

It’s impossible for me to tell how much the med’s are doing vs. the diet.

Second, has anybody else experienced

muscle stiffness on the Asacol?

It almost feels like I’m getting pulled muscles from very little exertion. (By the way, I was very healthy and did yoga and/or walked/ran every day before getting sick. I have not exercised since then because I’m still building up enough energy just to stay awake all day and be a wife and mom and lawyer).

Third, have people made lifestyle changes

to reduce stress?

My doc’s have advised me to do so. I do have a very stressful job, but I love it. If people have used stress-reduction to heal, what methods have they used? Does it work?

Any thoughts would be much appreciated!

written by Michelle

submitted in the Colitis Venting Area




boston

18 Responses to Newbie Looking For Wisdom

  1. Dede Cummings February 18, 2012 at 1:13 pm #

    Hi Michelle, I just read your post and was struck by the question about muscle stiffness. I have never taken asacol, but have heard one of the drug’s side effects is muscle stiffness. You should tell your doctor right away, and make sure your blood work is up to date. I was on prednisone for a long time, and that was no fun either. I have arthritis, but manage to keep active by doing yoga, and meditating and walking…. I also take Omega 3 to help with joint pain. It is a hard, at the beginning, especially! Glad you found this site, because many of us have been there‚ on the toilet, etc. ! There is an article in this month’s MORE magazine about my struggle with Crohn’s-colitis. I have been getting emails from other women in their 30s-50’s who say they have a hard time juggling work, kids, marriage, exercise, etc., maybe you can get some extra help so you can de-stress a bit? Is there someone who can help more around the house? WIth the kids? Try to stick to a routine—maybe at work, go out for a lunch-walk and get some exercise, and leave early enough so you can get lots of sleep.

    Yoga in the morning (I use the easy-to-follow “AM/PM Yoga by Rodney Yee”) with guided meditation (on the DVD) is a great stress reducer. Walk 45 minutes a day, go to a therapist to talk about the stuff that is bothering you, etc., and keep venting on this site. It took me years before I was able to “go public” with my disease—I am a freelance writer, agent and book designer, and I actually got fired by a publisher because I missed a deadline. These kinds of stresses are hard, and maybe work will allow you to go to 3/5 time while you regain your health?! Good luck—I hope this helped! Oh, one more thing: I got a naturopathic doctor who really helps and my insurance pays for the office visits! She has me on vitamins (multi for women), probiotics, Vitamin D, C with Echinacea, etc. It is really great to see a naturopath!

  2. Bev February 18, 2012 at 4:17 pm #

    Hi Michelle,

    Yes, I most definitely have joint/muscle pain and stiffness. I am currently on 12 asacol per day, as I am in a flare at the moment, but I have been on it for nearly 15 years total, at smaller doses. I am an avid exerciser for the last 30 years (I am 48 now), and I have exercised right through all of it. Perhaps the exercise is keeping me limber and helps with the muscle pain and stiffness, and I know it keeps me sane. I’m sure I would be on antidepressants by now, had I given up on the exercise. There have been MANY times when I did not want to do it, but in 15 years, I have never missed a workout…unless I had the flu or something, that is. As for stress…well…exercise is great for that as well.

    I do not think I’d be where I am without exercise in so many ways. People tell me, first, that I do not look 48, and second, that I do not look like I have ulcerative pancolitis or any other illness. Apparently, I look like a normal, healthy, and fit person. That definitely helps me to feel better when I am feeling sick and tired of the whole UC thing!

    Keep on going…that’s all we can do! You will get used to everything eventually. It took me a few flares before I actually accepted that this is forever. I didn’t believe it at first. I am taking heavy probiotics as well as the asacol, and they are helping. It took awhile, but they are helping! No more bleeding, and hardly any pain, finally!!

    Cheers,
    Bev:)

  3. Kim Pratt February 18, 2012 at 4:54 pm #

    Hi Michelle,
    You are very lucky to be diagnosed so quickly, although it looks as if your symptoms got dangerous and quite painful quickly as well (not so lucky, I realize). I suffered with UC symptoms (an alternation between severe constipation and then sudden stomach convulsions and explosive diahhrea) for about 7 months before my symptoms started to show true infection through a fever that kept reappearing. Thankfully, the PA finally ordered a colonoscopy for me (the GI Doc kept telling me I had IBS and there was nothing he could do until that point!), and they discovered that 3/4 of my colon was hugely inflamed. The doctor told me it was like trying to pass food through very rough sandpaper (the pictures looked like Mars!). Hadn’t I been telling him that was what it felt like?? Oh well… They immediately put me on prednisone, to reduce the severe inflammation, and Asacol. I was on prednisone for a total of about 4 months (with tapering dosages the last 6 weeks), and I still take Asacol (down to 2400mg daily in two separate doses in the AM and PM now) as a maintenance regime. I have thankfully been symptom free since then, since June 2009. Prednisone was no treat, and I don’t cherish taking medicine daily, but I am so thankful these medicines were available and that they worked. It completely changed my life! When I asked about how long I should stay on Asacol, I was told that I could choose to go off of it if I wanted, but that would increase the likelihood of the UC flaring up again. So far, I have chosen to stay on the drug for a variety of reasons (including the fact that I have been planning on having children and did not want UC symptoms to hinder that. I am now 6.5 months pregnant and have not had any single flare-up during pregnancy to date).
    I did experience a little joint pain in the beginning of my treatment–probably during the first six months or so. However, it did subside, and I have not had anything significant to report since then.
    I hope this helps, and I wish you the best in your continued healing!
    K.

  4. OrdinaryWorldWhereRU February 18, 2012 at 5:08 pm #

    I have been on Asacol for over a year and haven’t had any stiffness from it myself. I am also on Remicade and have had no side effects from it yet. I didn’t move to Remicade right away. I actually had a great response to Asacol when I started it but shortly afterwards I had another medical event which seems to have really had a negative effect on my UC. I take a multi-vitamin/mineral every day. I eat a relatively low fiber diet and am in the process of slowly increasing my fiber intake. I cannot and have never been able to consume whole grain so that is unchanged for me. I have had joint pain but I had that long before the disease showed up. Given that both Rheumatoid Arthritis and IBD are currently considered Auto-Immune diseases, it would seem logical that people could suffer from both. When I do light exercise that stretches my limbs I do feel appreciably better. When I was first diagnosed I was really, really tired but as my flair got under control, that abated. I still have those times but they usually come around on the weekends when they do. I believe in the notion that there is good stress and there is bad stress. My job is also stressful but it feels like the good type to me. A bad stress item for me is driving to/from work and the plethora of bad driving I encounter. I have actually encountered someone driving in the wrong lane, in reverse. I encountered him as I was driving home and he was facing me in my lane. Now that is enough to stress anyone out! I have been pretty open about my disease as I found that trying to hide it caused me more stress than it was worth.

  5. Merlin February 18, 2012 at 7:04 pm #

    Hi Michelle

    I’m a 55 year old male diagnosed with UC april of 2011. I started with asacolHD two 800mg 3 times a day. It took about 6 weeks weeks before they started to work. Like you everything went great. Then I messed up. Because the meds were so expensive I switched to Balasazide Disodium and prednisone. Everything was great till got off the steroids. The last week in December I’ve started a major flare. Maybe up to 25 bm’s a day. Now I’m around half that and hoping to improve and what the heck, doing it without steroids. I’ve started SCDiet and hoping that it will help. So my point is if something is working for you and others who are reading this Do not change what working for you. Glad you are doing great.

  6. Rahwayrunner February 18, 2012 at 7:41 pm #

    Newbie,

    I was diagnosed with UC almost 40 years ago. I have been able to control flare ups with Asacol and Rowasa. I have never needed corticosteroid or used remicade. I have focused on diet during the years and exercise. During flare-ups I have avoided nuts, corn, spicy foods, pepper, and alcohol. Similar to your exoerience, I respond extremely well to just a few weeks of high doses of Asacol and Rowasa. When I am in remission, I maintain a low dosage of Asacol, and add yogurt into my diet. Hopefully, your UC will be as mild as mine.

  7. Eagles February 18, 2012 at 10:01 pm #

    Hey Michelle

    Im in Va. and have been living with UC since 2007. I was on Asacol at first but it did not put my UC in remission. I was treated with over 80Mg of Prednisone a day for over 7 months and then tapered down. Therapy was changed to Mercaptopurine and Lialda and a year later i experienced remission after a couple hospital stays and a lot of time spent feeling lowsy all while working.

    So i cannot say i experienced any great results from Asacol. I know two people that are on the drug as well and their results are not really good however i have read a lot of great experiences with the drug. I did not experience muscle stiffness while on the drug.

    Lifestyle changes
    I kept everything in my life the same and just tried to focus on the things that bring me so much hapiness and help me destress. To ad to my struggles of dealing with the stress of the disease i also suffer from (PTSD) from a near death multi vehicular accident. The stress of the disease alone is hard enough to handle. The exercises i used to be able to do are no longer obtainable for me but i do believe that the endorphins released from exercise help imensly to reduce stress levels.

    Enough said about me i get tired of writing about me sometimes. What I will say is keep your head up and one medicine may not work and it may lead to different types of treatments but persistence will prevail and with that and the help of the right doctors the right treatment can be found.

    At least you are reaching out which is awesome and something that took me about 5 years to do.

    Best of luck and my prayers are with you.
    Eagles :)
    D

  8. PeterNZ February 19, 2012 at 12:13 pm #

    “One loose foul-smelling stool each morning; some ominous tummy rumbling during the day; muscle stiffness”

    Dude,
    If that all you got you should be praising Jesus!

    • Bev February 19, 2012 at 1:23 pm #

      Really…lol!

      Cheers:)

      • michelle February 24, 2012 at 6:06 am #

        Oh believe me I am praising all that is holy!

  9. David February 19, 2012 at 2:31 pm #

    Hi Michelle:

    Sorry to hear that you are newly diagnosed with UC. I hope you are able to get it under control soon with just the Asacol and SCD diet and won`t have to be on Prednisone for a long time. I`m 58 year old and have had UC for 4-1/2 years. It`s been a nightmare battle for me and I hope you have a better outcome that I have had so far. I started out on Asacol and Rowasa enemas with very little sucess. I haven`t had any muscle stiffness from the Asacol. I had constant flare ups for years. In over 4 years I had a period of about 6 months where I was symptom free. I thought it was in remission but my symptoms came back and it`s been a constant struggle. I`ve run the entire gammut of drug treatments. I`ve been on Prednisone for over 3 years along with Asacol and Hydrocortisone enemas every night. I`ve had several colonoscopies and flexible sigmoidoscopies over the past few years. I`ve gone up and down on my Prednisone dosage and that`s the only thing that has kept the flares under control. I`ve done Methotrexate injections which didn`t work for me. The non steroid drugs haven`t worked for me (Asacol, Rowasa etc.). I`m considered steroid dependent from being on Prednisone for several years. Finally after more than 4 years, I started on Remicade infusions. I`ve two infusion in Dec. 2011 and one infusion in January. In March I will have my fourth infusion and if things continue to improve, I will be getting eight infusions per year as a maintenance plan. The Remicade seems to be working and I`m finally able to taper down on the Prednisone. I`m down to 5mg of Prednisone per day. I`m still doing the Hydrocortisone enemas every other day but will be able to taper down on those now. I have to say that for the first time in years I`m starting to feel normal again thanks to the Remicade. It`s very expensive but I didn`t have many options left.

    I hope you have a better experience than I`ve had. I do know that a good UC diet and managing stress is very important to keeping the flares at bay. It`s hard to not be stressed or depressed with this disease especially when you are flaring. You can`t help but think about your inflammed colon every day and worry about going to the bathroom constantly. Exercise, relaxation and meditation therapy can help. I didn`t have much luck with Probiotics and herbal products.

    Best wishes with your battle and I hope you can get your UC under control quickly.

    .

  10. Jodi February 20, 2012 at 5:18 pm #

    Hi there. I was prescribed Asacol and it did not work for me. I wasn’t that disappointed, simply because the doctor had me on a regimen of having to having to take them four times a day. He then switched me to Lialda which I am doing much better on, and luckily do not have any side effects. A friend of mine, who is a pharmacist, had also recommended it (her dad has UC also and that is what he takes).

    As you can see from this website, we all have our own individual struggles and find things that work either from networking here, along with help from our doctors (well, some of us). My greatest suggestion to anyone who has UC is bananas! bananas! bananas! Super healing for me.

    Good luck.

    Jodi :-)

  11. Adam
    Adam February 20, 2012 at 11:58 pm #

    Hi Michelle,
    To reduce stress, I made a pretty big lifestyle change and went on disability from work right after I was diagnosed. One of the best decisions I’ve made. Thankfully, the government was able to help me out financially. I wasn’t using Asacol for very long, so I’m not much of a help with those questions.
    Thanks for joining our group here,
    Adam

  12. tom February 21, 2012 at 6:58 am #

    Hi Michelle,

    Ive also got UC and i have found a similar effect taking Asacol, i take Azathriprine all the time which tends to keep me feeling healthy but soon as i feel a flare coming on i take Asacol enemas at night before i go to bed and after around a week or so i start to get back on track. But its funny how i came across this post because this weekend just gone i have pulled my back playing football (soccer) and its really strange as know one was anywere near me at the time i just felt it pull. And i instantly thought this is something to do with my UC and the meds im taking, so i had a look round the net and it bought me to this, i am putting it down to the asacol as im flaring up abit at the moment and only started taking it again early last week. I keep seeing people talk about this remocade i think it would benefit me but im guessing the doctor will not allow me to try it untill iv tried everything else (which is down to money and makes me soo angry) but does anyone have tips on ways to get the doctor to let you try what you suggest (jedi mind tricks maybe) lol. anyway just thought id let you know im reacting to the Asacol in a very similar way.

    cheers

    tom

  13. Laura from Toronto
    Laura February 21, 2012 at 8:27 am #

    Hi Michelle,
    I think trying to reduce stress is a very important factor in controlling this disease, along with diet of course! Personally, I find if I am flaring it’s best to tone down hard core exercise. I usually run, practice yoga and cycle but when in flare try to do a little more gentle exercises like walking or just stretching. The body needs to be able to heal and if we push too hard and wear it down it sometimes becomes counter productive. Try also to get more sleep if possible. Rest is so important when we are starting to break down. If your exercising less, you body needs less fuel (food!) so I tend to try to give my bowel a bit of a rest by eating way less and when I do just eating soup and drinking lot’s of water. I know it’s not a long term soluion but it’s amazing what a few days of that actually accomplishes.
    I used Asacol many years ago when I was first diagnosed but was not on for long since it did not work for me.
    Good luck,
    Laura

    • PeterNZ February 22, 2012 at 12:58 pm #

      Hi Laura,
      I find it interesting that you suggest to eat less when having a flare. I am the opposite as I feel that so much connective tissue is being lost from your body that it must be replaced to restore normal function. The only way to do this is to deliver protein and energy to your body by eating. I feel that you need to give your body as much of the building blocks it needs to replace what is lost and repair itself. You can still “rest your bowel” to some degree by eating “gentle” foods or using blender etc.
      If you withhold food where is your body going to get energy and nutrients from to repair itself?
      Cheers,
      Peter

      • Laura from Toronto
        Laura February 22, 2012 at 7:07 pm #

        Hey Peter,
        I guess we all use different methods for relief. I have had uc for 15 years and have experimented quite a bit. The few times I have been hospitalized the first thing they did was cut out food. Obviously, there’s a little extra that they give us in the IV, and as I wrote it’s not a long term solution by far to do on your own. I really noticed this worked for me when I was between medications and had to ‘wait’ before starting a new one. (going from Remicade to Humira) My doctor was against me taking any more Prednisone so I restricted my food intake. Since us UC’ers usually cannot afford to lose too much weight, it’s a little tricky, but I find it doesn’t take too long to get back to my normal weight once I am feeling better. I’m 5’2 and normally weigh 114lbs. This is my ‘healthy’ weight. When cutting I usually only lose about 5lbs. Since I am not doing very much in terms of activity, I think for me it’s okay. I have actually been reading about the benefits of fasting recently. There was a pretty great article in Harper’s Magazine – “Starving Your Way To Vigor”. I tried to find it for you, but you need to be a subscriber.
        I find in our Western culture we eat way too much food. We can live and thrive on much less, but of course that is just my humble opinion and what works for one does not necessarily work for all.
        Take care!
        Laura

  14. michelle February 24, 2012 at 6:03 am #

    Wow! I had thought that I’d be notified of responses by email, so I had no idea until I just checked the site that there were so many helpful comments waiting for me! Thanks, everybody. If anyone’s still reading this thread, here’s the next question: My poops are getting harder — in fact they seem pretty darn normal now — but they come only every other day or so and there is more blood than there was with softer stools. Not a ton of blood, but certainly more than just hemmoroids (sp?) are responsible for. I suspect I’m eating too much nut butter, and maybe I should hold off on salad. Any SCD people have experience with controlling blood loss with the diet?

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