Denim: Friend or Foe?

AJF fullIntroduction:

I’ve been in the advertising industry my whole life and with today’s technology am able to work from home. My home office saved my life with the onset of UC. I’m one of the rarer one’s who was just diagnosed this past summer at age 55. Although there are many blessings about being this age, the hardest part about getting UC at this late stage is that I’m a stubborn mule and refused to think I was sick or needed help, as you’ll see from my story.

Some more about me:

I’m an east coast city boy. I was raised in Washington, D.C., lived in New York, Miami and now Atlanta. I travel a lot and have been to most major cities in the U.S., Canada and Europe. They all have their unique beauty and personality, but for some reason, I love the east coast and am happy to call it home. I enjoy history, art and theater, good food and I love to read fictional novels. Oh, and I do 4-5 crossword puzzles everyday. I live with my partner of 14 years and our crazy Border Collie that keeps us herded and moving in the right direction.

Symptoms:

I am currently in remission although I still have very soft and frequent bowel movements, sometimes painful.

Denim: Friend or Foe?

Does anybody wear button-down fly jeans anymore? I do. Levi’s 501s. They were the “uniform” back in the 70s when I was a teenager. I’m 55 today and still love my 501 button-down jeans. Of course, I’m not wearing the same ones as 40 years ago, I regularly buy new ones. I love the thick, stiff denim and the process of breaking them in to the perfect comfort level. We used to go to the beach and swim while wearing a new pair to help soften them in the ocean water. So, I recently bought a new pair when my world turned up-side-down.

I’ve worked for the same company for 25 years when they sold it from under my feet. Like so many others in this modern depression era, I found myself unemployed and in my mid 50s. Being the optimist that I am, I came home and told my partner we should take this “opportunity” and move to a new city, which we’d been thinking about for several years. He was able to transfer to a new location with his same company and moved ahead of me to establish a place to live and settle in. I stayed behind to pack up the house, load the truck, say good bye to my family and friends and start a new life.

So it comes as no surprise that on the very first day of the rest of my life I had severe abdominal pain and found myself on the crapper with extreme diarrhea . Stress and nerves. That’s all this is. It was a crazy couple of months getting here and I’d been stressed beyond belief with my uncertain future. Stress and nerves. That’s all it is. It got worse, of course. Blood, mucus, pain, sleepless nights, fever. As soon as I’d leave the bathroom, I’d turn around and go right back in. I had at the very least, 10-15 bowel movements every day. And the pain just got worse. Stress and nerves. That’s all it is.

This persisted for about a month. It didn’t even occur to me to see a doctor. Stress and nerves. That’s all it is. I’d soon settle into this new city, this new life. A bit a good fortune befell me in the midst of all this. The people that bought the old company wanted to keep me on board and I could work from home, from a far away city. Sweet! Things were looking up. I knew I’d get better.

One day a couple of old friends were passing through town and stopped by. We had a very nice visit that afternoon and I was able to keep my frequent visits to the loo without notice. We decided to go for dinner at a nearby pub, only two blocks from my apartment. I could do this! I was nervous, but I could do this. While everyone else was in a feeding frenzy of juicy burgers, french fries, supreme nachos and beer, I sipped on a bowl of vegetable soup.

Made it through dinner, walked home and said good bye to our friends. We were waiting in front of our building for them to pull their car out of the parking garage and wave a final good bye when the urge came. Couldn’t wait. A fever broke while I was waiting for the elevator. Sweat streamed down the side of my face. My butt muscles clenched as hard as they possibly could and the panic rose in me like the seconds before Old Faithful can do nothing else but release the pent up pressure.

I swear, the devil himself lives in elevators. They just take their own sweet time, never thinking about anyone else, just themselves and their own needs.

Once inside, I’m pushing the “close door” button… tap, tap, tap, tap, tap, tap, tap, tap thinking it’ll never close and get me up to my floor. The door finally opens and I burst into a power walk, which then turns into a jog, which then turns into a full out sprint. Of course, my apartment is an end unit, and the furthest away from the elevator. Just my luck.

Door locks are almost as bad as elevators. Just saying.

I’m in my apartment, I’m in the bathroom, I made it!!!

Did I mention I was wearing my brand new Levi’s 501 button-down jeans?

Yes, the glamor never ends. I believe I was able to get one button undone before the dam burst, the pipes ruptured, the levee breached, the well spilled over, the Titanic sank, Noah rebuilt the ark, Neptune & Poseidon took shelter, Willy Wonka smiled, Waldo came out of hiding and families took to the hills.

Stress and nerves. That’s all this is.

Can you believe what an idiot I am? I mean, what is it going to take for me to realize that something is seriously going wrong? The blood alone (and there was rivers of it) should have set off the alarm bells in my brain to get to a doctor. But no. Stress and nerves. That’s all it is.

The fun doesn’t end here. That very next day I had to get on an airplane! It occurred to me that I’ve experienced this scene somewhere before. There’s a television commercial that has a lady walking around an airport but never getting too far from the bathroom. It must have been one of those medical commercials about UC or Crohn’s but I never paid any attention to it because it wasn’t me. But, as I sat in the closest chair to the men’s room while waiting for my flight, the thought of that commercial made me laugh. Still, stress and nerves, that’s all it is.

On one of my visits to the airport lav, I was so distressed that I left my Ipad in the stall. Fortunately when I ran back to fetch it, it was still there. It’s a good thing too, because that was my only means of communication. When I threw my jeans into the washing machine the night before, I also washed my cell phone!

There’s nothing worse than public toilets, that is unless it’s on an airplane. I became one of those people that everybody talks about when they get back to their seats saying, “I will never use an airplane bathroom ever again… whoever was in there before me…….” well, you get the picture.

I was back home for the holidays and totally spent them at home, not daring to go outside. I was in bed by 10pm on New Years Eve hoping I could sleep that night. It had been about 6 weeks since the beginning of the rest of my life and then another two weeks when the heaven’s finally opened up, the bugle’s blared, the bells chimed, the angel’s sang and a ray of golden warmth enveloped me like I was the new messiah… and I felt for the first time in two months, fine.

Normal, solid bowel movements. No more bleeding. No more abdominal pain. I could sleep. I could walk the dog. I could go out to dinner. I could visit friends. See? Stress and nerves. That’s all it was. I got over it. Done. Finished. Kaput. The End. Finito. Stress and nerves. That’s all it was. I settled into my new life. Everything was back to normal now and I was happy.

I sold my old house and drove the 12 hours to get there, empty the rest of the contents out and drove 12 hours back. No problem. I was working and playing and exploring my new surroundings and staying out for hours on end. No problem. Stress and nerves is all it was.

Not so fast, buddy. My normal life persisted for about 10 weeks when it all started to fall apart again. Deja vu. Exactly the same. The pain, the poop, the blood, the mucus, the fever and everything that came along with it the first time around.

This is no longer stress and nerves. I finally got it.

Doctor visit presumed bacteria and parasites. Took blood, found nothing except that I was anemic. What a surprise. He referred me to a GI which made me mad because I knew they were going to want to do a colonoscopy. Seriously, it’s not at the top of my bucket list of fun things to do in my life before I die. But, of course, that’s exactly what happened.

Diagnosis: Ulcerative Colitis. Pancolitis.

My diagnosis came six months after the first day of the rest of my life, just 3 months ago. I’m taking Asacol 800 mg, 6 per day (3 am/3 pm). The bleeding and pain have stopped, the soft bowels continue, but only about 4-6 times per day. There’s still a lot of discomfort but that comes and goes. It all seems so easy to live with after the horrific pain from the previous year. I’m just not sure what my new normal is going to be or what it should be. Like I said, compared to what I went through, this is a cakewalk.

Not so fast buddy. Joint pain presented itself just last week. I thought it was just another one of those “getting on in years” things. But, after a few days of wondering what could have brought this on, I decided to see if there was a connection between UC and joint pain. And, here I am, in Adam’s website, with all of you, and your stories. The greatest lesson in reading all of your stories is not only gleaning the wealth of information and experiences from all of you, but there is also a sense of comfort in the discovery of a new family.

Although I’m living pretty well right now, that is without pain or blood, it sounds like this SCD diet is getting many of you to complete normal. I’m not sure that’s the direction I need to go now… or yet. When is it time? How do you know? Is it now? I love bread! and fruit! and vegetables! I eat almost everything I used to, just in very small portions. So, your thoughts about next steps in this early stage of my UC are very much appreciated.

Thank you and all of your stories for being there for me. I look forward to our future.

And, one more life lesson: NO MORE LEVI’S 501 BUTTON-DOWN JEANS!! EVER!

Medications:

I was first on Lialda but I didn’t seem to get much relief. My doctor switched me over to Asacol thinking that the twice daily dosage may be better and she was right. I stopped taking all my other supplements, like fish oil & vitamins and actually feel better without them.

written by AJF

submitted in the colitis venting area




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49 Responses to Denim: Friend or Foe?

  1. bev September 11, 2013 at 1:27 pm #

    AJF…you should be a writer!! Or are you one already? Fabulous post.

    First…were those the NEW pair of 501s? Also, gotta agree with you on elevators and doors, my friend. Too right.

    I’ve had this wonderful condition for some 17 years now, and after 15 years on asacol, and feeling awful on it (I’m one of those people who get the worst of the worst side effects from drugs, if there are any), I am in remission for the first time without any meds at all. I take a good probiotic, every day, first thing in the am, on an empty stomach, and then don’t eat (or drink anything other than water) for at least a half hour afterward. I was a non believer in probiotics, but as it turns out, UC ers tend to lack good bacteria in their guts for whatever reason. I’m a believer now.

    The bleeding was still present while on the probiotic, which is never a good sign, so I was then also recommended fermented L-glutamine powder, which I take around 11am, also on an empty stomach. That actually heals the mucosa of the colon, thus the ulcers.

    I will actually never do meds again for UC. Knowing what I know now…that it’s mainly a bacteria problem, I think that new, more natural treatments are coming down the pipes, so to speak. Fecal transplants are being tested as I write, and there is talk of synthetic ones. Good bacteria…the wave of the future!

    I also take vitamin D and a natural anti inflammatory called astaxanthin just FYI. Inflammation also plays a role in UC.

    Cheers…and thanks for the post! Great writing!

    Bev

    • AJF September 11, 2013 at 2:52 pm #

      Hi Bev,
      Thanks for the good advise. It’s amazing how well many UCers are doing without meds. Truthfully, I’m very trepidacious about going off them, at least for right now because I don’t seem to have side effects and the Asacol is [mostly] working. My question to you, and anyone else, is can you go on the probiotics as well as the L-glutamine powder while still on meds? If so, how do you know what’s working and what’s not?

      Is there any advice out there about the joint pain? It’s strongest in my elbow but I also feel it in my knuckles and knee.

      By the way, I’m not a writer but love to. I wish I had the time to devote to it!
      Thanks,
      AJ

      • bev September 12, 2013 at 8:25 am #

        Why, yes you can take the probiotic and L-glutamine whilst on the asacol. AJ! Most certainly. In fact, I did just that. I started the probiotic while I was still taking 12 asacol tablets per day. Within three days, I felt such a difference in that the cramping and urgency literally disappeared. Mind you, I did not feel that the asacol was working for me at all any more. I had been on it for 14 years prior to the last go round, and at times, it did work. However, as with all the UC meds, it obviously ceased working, and actually began exacerbating the UC symptoms! Perhaps it was the maximum dose that I was on for the nasty flare I was having…which, by the way I believe was caused by taking avelox (a strong antibiotic), for a pneumonia that I had somehow contracted…but I digress…

        I could definitely just FEEL that the probiotic was working…you’ll know…then, when I went off of the asacol, I also strated the L-glutamine because there was still a bit of bleeding…but I surely could have also taken that while still on the asacol, had I even known about it and the colon healing properties that it has!

        Oh, if I could only have the past 15 years back…but I cannot…I would do things so very differently. I was uneducated and hung on the doctors’ every word. I really don’t blame myself. We can and should question everything…we can and should take control of our own health…we can choose to do whatever we want to do in treating UC….the doctors can only do so much. They go by the UC ‘book’. They have to. That is their job.

        Cheers,
        Bev

        • AJF
          AJF September 13, 2013 at 3:42 am #

          Excellent. Thank you so much, Bev. I’m on board!

          • bev September 13, 2013 at 5:58 am #

            Please keep the site posted, AJ. If this works for you as well, then the info needs to be passed on to all of the newly diagnosed, and the old UCers as well!

            Just FYI, the probiotic needs to be taken on a completely empty stomach (that’s why I take it as soon as I get up) and then no eating for at least half an hour. The L-glutamine should also be taken on an empty stomach. You’ll just get your $$’s worth that way and they will be allowed to REALLY do their job!

        • AJF September 14, 2013 at 5:50 am #

          I will, indeed, keep you posted on my progress. I’m going to start the probiotic and l-glutamine today. Thanks again for sharing your experiences!

  2. Els September 11, 2013 at 1:48 pm #

    Love, love, love the humour!! I must admit I laughed real hard reading about the elevator and running fast. I had one of those urges on holiday 5 minutes walk to our villa, I made it in fastest time to them find I could not unlock the door as I was shaking violently and squeezing my ass as hard as I could!! I made it but screamed, love reading the stories and so think its best dealt with a good dose of humour!! Take care all. I will always think of you when wearing my Levi’s!! Xx

    • AJF September 11, 2013 at 2:55 pm #

      Hi Els,
      Gotta keep a great sense of humor throughout everything in life! Sorry for your similar episode, but I’m glad it’s not just me!!
      Be well.
      AJ

  3. shelly in maine September 11, 2013 at 3:51 pm #

    Hey AJF,
    Welcome to the family! And Sorry! :-) That’s some great writing. Have you read Adam’s book? You’d love it! And learn about SCD.
    UC basics….
    And buttons and belts…not so much! Unless you lose enough weight that you can pull your pants right down! I always say our theme song is I’ve been everywhere, man”! And the real story of The Places I’ve Been! You learn where every bathroom is and make recommendations of the cleanest ones! Your bathroom is always fully stocked with plenty of t.p., you always have a change of clothes. You will become a scientist, Dr., nutritionist, psychologist, chef, poopologist, pharmacist, realize that privacy is no longer as important as actually making to the toilet, your dog/s will be the first to check on you…i have 2 terriers-rat and jack, etc, etc I could go on! :-)
    Yes to everything Bev said. I’m 45 and had this loveliness pretty much forever…yes to the fish oil, too. It will help with joint pain. Always get high quality of everything. My family has bread in their veins and I don’t miss it as much as I thought I would…eventually the cost benefit reasoning takes over your desire and how you feel after eating those things. Also, the less you have them, the less you want them and you do eventually feel crappier when you eat those things. I can’t tell you it is a cure,but it will help and you will feel a million times better and probably be able to give up the meds…yes, really.
    Anyway, keep reading and educating yourself on UC, the meds, the side effects and the natural routes. Eventually the meds stop working, they all do, and sometimes the meds are causing as many problems as they are trying to fix! I amnot anti meds, but pro self education…I have been on ALL the meds so I now and have been ed free for over 2 years with plenty of problems. So i wish you continued health and while you are feeling well is the best time for you to try and make changes.
    Oh yeah, I’m an east coaster-obviously! And just got legally married going on 26 years! A good spouse/partner/best friend is key to fighting and living with UC!
    Best, Shelly. ( sorry for tablet typos it won’t let me correct! :-) )

    • AJF
      AJF September 12, 2013 at 5:12 am #

      Hey Shelly,
      Congratulations on your marriage! See what happens when you get “ed” out of your life? Really, I wish you and your spouse all the best.
      Thanks for your reply. I’m getting back on the fish oil (started this morning) to see if that will alleviate the joint pain, and after reading several replies and other stories, I’m definitely going to look into probiotics. We will see where the path leads.
      Thanks and best of health!
      AJ

  4. Caroline
    Caroline September 11, 2013 at 3:51 pm #

    Ah, I can relate to so much of this! Even the button fly Levi’s – I miss my old favorite pair that I wore until they literally fell apart. It’s probably a good thing that I didn’t have them when I got my first UC flare last winter! I loved your story – you truly have a gift for writing.

    I was diagnosed with severe pancolitis in January, after a few months of denial. When the diagnosis came through, I decided (with the help of this site, my 2nd GI doc, an acupuncturist, and a naturopath) that I would do everything and anything to make this never happen again. My GI doc did not like that I said that, because he felt like I was setting myself up to blame myself when it, inevitably, happened again. But in my mind, I felt like if I didn’t do absolutely everything I could I would be more likely to blame myself, if that makes sense. I have been in remission since March/April, and am THRILLED! Anyways, here’s what I did:

    Prednisone – ugh, terrible drug, but jump started my recovery. I needed the big dogs to help kill some of the inflammation. I was on a 2 month round, starting at 40mg and tapering down 5 mg a week.

    Apriso – I take Apriso daily as my maintenance drug. I have no side effects from it and it’s an anti-inflammatory for the colon. I hope to wean off of that next year.

    Paleo diet – I hear great things about SCD and Paleo! I had been a loose paleo eater before, but took it up a notch and eliminated nuts (I can add those in small amounts today) and nightshades (omg, tomatoes are the worst and I was eating tons of them. ) In the beginning, I also made lots of bone broth. I have been able to also add back in small amounts of coffee and alcohol after a few months had passed. I had experienced feeling great before after giving up gluten, grains, processed foods and dairy, so mentally this was something that I was okay with. I attribute the bulk of my sustained remission to this. I feel better than I did before I was sick, and I thought I was pretty healthy then!

    Probiotic – VSL DS, 1 packet a day. It’s been amazing for me. Find a probiotic that works for you. I also eat probiotic foods (kombucha tea, fermented pickles and cabbage – yum)

    Anti-inflammatory supplements – Vitamin D drops, Fish Oil, and Astaxanthin. Every day.

    L-glutamine – This powder actually heals your colon! I mix it with my probiotic powder in the morning. If I have a little uptick in symptoms, I take it more frequently.

    It sounds like a lot, but it’s what works for me so I am hesitant to mess with my magic formula! Haha – beats living in the can, right? I also make sure to get plenty of sleep and exercise. I also get acupuncture about once a month to keep me balanced and healthy. :)

    Everyone has to find what works for them – please keep us posted on your journey! Take care of that border collie – what sweet pups.

    • AJF
      AJF September 12, 2013 at 5:28 am #

      Thank you so much Caroline. There’s so much to take in and so much to learn about. One step at a time. I totally understand what you mean about not ever wanting to go through this again and taking matters into your own hands. It’s scary becoming one’s own guinea pig but there’s no miracle cure out there so, away we go.
      Thanks again for your magic formula and wishing you good health!
      AJ

  5. shelly in maine September 11, 2013 at 3:56 pm #

    …so I don’t know who ed is but i guess I am free of him and meds!!
    And p.s. you were due for a colonoscopy anyway!
    Oh, I forgot to mention that UC will teach you many things as well…it is a curse and a gift! :-)

  6. Richele
    Richele September 11, 2013 at 8:08 pm #

    Hi AJF,
    When all else fails, laugh. It really is the best therapy and you certainly have quite a sense of humor. So, thank you for the laughs!! I really chuckled when I was reading the part about waving goodbye to your friends and suddenly being struck with imminent, hot diarrhea. The sweats, the chills, the hot water that suddenly fills the mouth, like that feeling one gets before vomiting. So many countless times, I have fumbled with keys at the front door, or struggled to get my baby and toddler out of the car seat…so many scenarios. Memorial Day parade. I’ll just poop right… here. I’ve soiled brand new jeans too…but dresses!! Nothing to stop it from running down your leg. UGH!!!
    But luckily, we can all commiserate here! This website has been so helpful to me. If anything, just to give a little hope when needed.
    In good health and happiness,
    Richele

    • AJF
      AJF September 13, 2013 at 3:52 am #

      OMG… I cannot imagine having to deal with UC AND a baby & toddler at the same time. I’ve turned my dog into a complete psycho with my comings and goings… but baby & toddler must be a torment when the urge comes. Thanks for commiserating with me Richele. And, you’re right, this website is full of good info, hope, and good people.
      AJ

      • Richele
        Richele September 13, 2013 at 5:10 pm #

        I’ve breastfed while sitting on the loo. Too much info? ;)

        • Sharon September 14, 2013 at 3:31 am #

          Been there, done that :)

          Sharon

        • AJF September 14, 2013 at 5:43 am #

          Oh, man, that sucks. I just bring my I-pad to the can with me!

  7. Sharon September 12, 2013 at 1:20 am #

    Welcome to the club you wish you never had to join! I have had UC for 23 years. For the first 20 I knew no one else with UC/Crohns and was able to use Asacol, enemas, and occasionally prednisone to live a somewhat normal life. If I started to flare, I took meds and usually within a month I was completely flare free for a year or 2 or 3. The last 3 years have been a different story (see my Lialda reaction under drug reactions). I am only now considering the GAP diet. I ate and drank anything I wanted unless I was in an active flare but now I am out of medical options. I am currently on Prednisone but it’s not working so I am doing a lot of food prep to start on a new journey.

    My point is that you may be able to find your balance with the meds or supplements or diet. If SCD appeals to you, by all means, try it. The great thing about this site is that there are many options here that your doctor either doesn’t know about or doesn’t have time to explain in your 10 minute appointment. We are all in this together.

    btw I take L-glutemide, Astaxanthin, VSL #3 probiotic (recently started), Iron, Prednisone, and Uceris

    • AJF
      AJF September 13, 2013 at 4:03 am #

      Hi Sharon,
      So sorry to hear that the meds have just not worked for you. As I’m learning, this UC journey is extraordinary and unique to everyone, and the good news is that this website offers so many options! Although I truly like my GI, and she spends ample time with me, she ultimately only offers meds. After hearing the replies to my story and reading so many others, I’m going to keep taking the Asacol, but combine them with probiotics, L-glutemide and also start looking more into dietary changes. The combo makes sense to me. Thank you and everyone else for your feedback and I wish you all the best of health going forward.
      AJ

  8. AJF
    AJF September 25, 2013 at 5:24 am #

    So far, probiotics have done nothing for me. I started taking them about 10 days ago. I got the Ultimate Flora Super Critical from Whole Foods. At first I started to get worse. Lot’s of gas and discomfort. Bowel movements were more frequent and more runny. By day three I was bleeding again mixed with mucous. My joints we so painful I couldn’t even empty the dishwasher. I thought I was going to have another flare. But I persisted and by the end of the week I was back to where I started. So, I avoided an all out flare but am really no better now than before I started with them.

    I’ve also started the L-Glutamine. (Perhaps that was the reason for the gas… don’t know).

    Anyway, I stopped the probiotics. It’s expensive and it’s not showing results but I am eating foods with them like sour kraut, kim chi, activia, etc. Continuing with the L-glutamine. Feeling stable.

    • bev September 25, 2013 at 6:44 am #

      Wow…so sorry to hear this AJ…it’s often said that we all differ in not only how the UC presents, but also in what the magic bullet is in each of us.

      I’m not sure what else to say at this point other than if the probiotics aren’t your ‘bullet’, then, yes, why continue.

      Keep trying what you are with the fermented foods…

  9. Ann September 25, 2013 at 7:39 am #

    Hi Bev,

    I’ve been wanting to touch base with you. I am now just coming out of a horrific flare! I am on 40 mg of prednizone and asacol. I can start weaning the prednizone as long as the bleeding doesn’t come back. I have never been so scared in my life. I was in the hospital er 2 times because I was in so much pain! I lost 14 pounds which has never happened to me before either. I feel the drugs saved me. I was trying everything natural except the SCD. I am now on the SCD for two weeks straight, so far so good. I was not sure what I should and should not be eating so that is when I decided to go on the SCD. Let’s pray this is my cure because I don’t think I could go through another flare like this one. I am still very weak and am taking iron supplements for that. I also got a B12 injection. I am still in shock how much this literally kicked my butt this time. I will never let the bleeding go on for as long as I did (3 months) ever again before contacting my GI. I was really trying to avoid the meds but ended in the worse condition ever because of it. I missed 5 weeks of work basically in bed or sitting in the lazy boy the entire time! Not fun for this lovely time of year. I hope you are doing well and not being too stubborn, like me, about seeing your doc. Cheers! ;) Ann

    • bev September 25, 2013 at 9:57 am #

      Wow, Ann…have you any inkling what may have caused you to flare like this? I had a mini flare (I like to call it) about a month ago now, but I can absolutely attribute it to changing the probiotic that had been working so well for me. I tried a special ‘colon’ one, which, well let’s just say…was a BIG mistake. Evidently, it had different strains of bacteria in it that were not for me!

      Yes, I stubbornly refuse to go to the doctor…although, I haven’t really thought that I’d had to. I have doubled up on the ‘good’ probiotic, and I am back to where I was before, thank goodness.

      I am so sorry that you have had this happen. I don’t understand why it happened. I know that for me, there will be no more medication taking for UC…I will have my colon removed if necessary, and I mean that. The only thing I will consider is fecal transplants. However, I respect your choice for you, and anyone else that does go the medication route. Whatever works!

      Bev

  10. Ann September 25, 2013 at 7:45 am #

    I forgot to click on the box to notify me of followup comments so I’m doing it now. :)

  11. Ann September 25, 2013 at 10:20 am #

    I’m not really sure why I flared so bad. I seemed to have it under control with the evoo in March when I went on my ski trip. I find it difficult to use the evoo as a remedy because they vary so much. I am hit or miss right now with the probiotic because I am taking so many other pills but I will get back on the probiotic program. The blood in my stool and pain are gone and I seem to have only 1 or 2 bm’s per day. Yeah! This really scared me shitless! I hope to never have an experience like that again but I am not out of the woods yet. I still feel like crap but the prenisone can do that too. Thank you so much for replying. I will keep you posted on the SCD and if/when I start integrating other foods. I can’t wait to have a beer and a pizza but am willing to make the sacrifice if that is what is takes to staying well. I am only drinking Chardonnay since it is a dry wine, one or two glasses a day. I went 4 weeks without any alcohol of any kind and didn’t care. I just wanted to feel better. Cheers! Ann

    • bev September 25, 2013 at 10:26 am #

      Please keep me posted, Ann. I really care about you.

      Bev

    • Sharon September 25, 2013 at 1:21 pm #

      HI Ann, I too have been in one heck of a flare. I have been on Prednisone 60 mg down to current 30 mg since the first part of August. I take Uceris, L-glut, VSL, iron as well. I am on day 10 of the GAPS diet and I feel like crap. I had my best day yesterday with only 8 bms and I am having dramatically less blood than I did a week ago but I feel like a slug. I have no energy, feel in a complete fog, and want to stay in bed all day. I have read that this is not uncommon on the GAPS diet but I was wondering if it is the same on the SCD. I can’t even imagine drinking a glass of wine any time in the near future. I have lost 16 pounds and I am worried about continuing to lose weight on this diet. Did you compare the SCD and GAPS before starting? What made you choose SCD? I chose GAPS because I liked the ease of having a 30 day guide that I ordered online with all the recipes. I also liked the idea of the ferments, and a few other things that my clouded mind cannot recall.

      Sharon

      • bev September 25, 2013 at 2:15 pm #

        What on earth is happening to all of us? Graham, Ann, Sharon…even me about a month ago…

        This damned UC. What are we to do? When are the fecal transplants, or a reasonable facsimile going to be available to us all??? Will they finally be the answer???

        I like what Graham said…we are all in the early stages of trying to figure the UC conundrum out…I tried to deviate from the probiotic that I was doing so great on, and it was a mistake. Graham, you say you tried different oils, only to find out that the grass might not be greener…

        I’m thinking out loud. I needed to vent. We will all survive this, and hopefully this will bring about even more solid answers,,,

        Bev

        • shelly in maine September 25, 2013 at 3:32 pm #

          hey all…uc does suck…but we’ll get through!
          Ann…nothing wrong with a Med powerboost if it gets you back and your side effects are minimal. Remember to talk to your Dr. About the extra, extra, extra slow taper off the prednisone…it may be the ting to keeep you going and successfully get you off the pred.

          Ajf..probiotics definitely cause gas…I had to take gas x when I first started and within a few days fine! Maybe the SCD yogurt is a great option for you. Don’t count out the probiotics forever…I promise you they are beneficial and there is now research to prove it. The extra pain could have been coincidence with general flaring/inflammation. Did you start fish oil and/or other antiinflammatories, vit d?? Also a must…I promise!

          Sharon, Ann, Ajf…check out the pecanbread website especially “stages”…it is geared toward kids, but actually makes more sense than some of the SCD sites. Alcohol is a NoNo…you have to start weighing your consequences as you get closer to surgery on whether or not you give things up…cost benefit…it then becomes a lot easier to give tings up! The longer you are without them, the less you miss them! I swear. After about 4 or 5 months on SCD I added organic oats back in because I was sooo hungry and losing weight…that helped.
          Anyway, I too a still flaring, but trying to eat better through this flare…(made worse by that whole ear/sinus infection still working on that, too!) More Chinese herbs and homeopathic meds…keeping my head just above water!
          So…hang in there all…we shall get through this…together! :-)
          Best, as always…Shelly

          • Richele
            Richele September 25, 2013 at 5:13 pm #

            Shelly,
            I just have to say thank you for that post. I think it is something every single one of us needed to read. Sometimes, a few simple words are all one needs to feel inspired and lifted up.
            You rock.
            Ri-“Shelly” in Michigan ;)

          • shelly in maine September 25, 2013 at 6:03 pm #

            Hey Richele,
            So glad you saw this…I tried to write you a post the other day, but my tablet kept making it disappear!
            It basically said some similar things wirpth the extra that you deservemtobe happy and healthy and live your life and be a mom!
            You/we can do anything we set our minds to do. Giving up foods to get your life back is doable. Our diets in the U.S. are horrible and now we are destroying the health of previously healthy cultures. If you can’t pronounce the ingredients…you probably shouldn’t be eating it. Your whole family will benefit from eating more natural, no processed, foods with few ingredients…I promise you….and that YOU can do it and you deserve to get your life back…we all do! Baby steps or sometimes you have to take the big leap…which sort of sounds like you!?! :-)
            We care. We’re here to support…everyone.
            Be well all, tomorrow is another day.
            Shelly. :-)

  12. Graham from England
    graham lee September 25, 2013 at 1:26 pm #

    Ann, sorry to hear about your decline. My quest for better oil may have produced unexpected results, stronger may not be better. I actually got worse with stronger oil though all things are not equal so cannot be 100% about this. Sorry but we are all experimenting at this early stage. I presume you have tried going back to the one that helped originally?

  13. Ann September 26, 2013 at 11:09 am #

    Hi Graham, Don’t be sorry…we are all trying to help eachother…I don’t know the name of the evoo I originally tried. I save my receipts…I might be able to find it that way…today is a better day,..slowly but surely…I am on the SCD but also prednisone and asacol…we’ll see if I stay in remission once I wean off the asacol 5 mg per week…I am at 35 mg right now, started at 40 three or so weeks ago.

    Hi Sharon, I chose the SCD over the GAPS diet because Adam has had such good luck and promotes the SCD. I am really not sure what the difference is. I have eliminated grains of all kinds, lactose and sugar from my diet. I do eat honey, that is pretty much my only sweet! I am sorry to hear you have not been doing well either. It must be in the air. I am just happy to eat. I wasn’t eating hardly anything until about 2 weeks ago when I started the SCD. I was afraid to eat! Now I am happy to eat as long as it is on the approved list in the book by Gottshall or Adam’s recipe book. Gottshall has some alcoholic beverages listed that are okay but to use with caution. Very dry wines are seeming okay but I am being very careful. I will definitely give it up if it means I might lose my colon. It sounds like your flare is worse than mine but it is all a mystery to me. This is my worst flare ever. I felt like I dropped off the face of the earth!

    Hi Shelley in Maine, You’re right, going off the Prednisone is very tricky…I am going slow 5 mg per week from 40, down to 35 as I stated to Graham. I think I am hooked on the SCD…

    Richelle, My sons are now 25 and 23…I remember parenting many a time from the potty…thank God I don’t have to do that any more…you and your children will survive and thrive…mine have told me they are stronger because of my illness…it’s amazing what comes out of adversity!

    Hi Bev, Keep Venting!! Love ya, Ann ;)

    Hi Adam…I’m doing the SCD, finally gave in (except the alcohol thing but will if I have to but Elaine’s book says it might be okay, there is a God!)……thanks for your support!

    • bev September 26, 2013 at 12:30 pm #

      You know I will, Ann…you know I will!

      Always…lol

      :)

    • shelly in maine September 29, 2013 at 3:51 am #

      Hey Ann,
      Hope things are going well. When I mentioned the taper it is when you get down to the 10 and 5 there is a regime to stretch it out a very long time…literally several plus weeks. I think Dede mentioned it in one of her posts. You have to give the body a chance to really start making it on its own. That’s why a lot of people flare right back up because the “slow” taper pis still not long enough.
      Be well, Shelly

      • Ann September 29, 2013 at 8:08 am #

        Okay Shelly, I will even take it slower once I get to 10 mg’s. I am feeling better every day. Still on SCD and Asacol. I can live with that easier than having my colon removed. I am happy to having my life coming back to me. :)

        • Sharon September 29, 2013 at 11:05 am #

          A few years ago I was tapering at what I thought was a slow pace. I had an appointment to see a GP since I haven’t had any doctor other that a GI for years and decided it was time. She had been assigned to me in the hospital and I had only been out a short time so it was a follow up. I got totally confused about where her office was located, ended up a complete wreck by the time I got there. I explained how my heart kept racing, I was light-headed, confused,etc. She prescribed Xanax and said that because of my traumatic hospital experience it made sense that I would now get a panic attack. I didn’t take the Xanax but the next day had my follow up with my GI. He walked in the room, took one look at me frantically flipping through a magazine and fidgiting like I had ADD. He took my wrist, checked my pulse and looked at my pupils. He said, for heavens sake go home and take more prednisone and slow down that taper. You look like drug addict! I did what he said and never needed that Xanax.

          • Ann September 29, 2013 at 6:43 pm #

            Sharon, it is interesting what you said about the Xanax. I was on it once years ago but nothing like that happened…but I wasn’t really checked like you were either. Makes me wonder how spaced out I was. I am taking Benedryl and Ambien on and off right now to help me sleep. I hate taking either one of them but I need my sleep. The Prednisone really messes with me and I can go many nights without sleeping at all. I was also wanting to ask you and Bev and anyone else who is reading this thread about strength. I seem to have lost most of my strength with this last flare. This has never happened before either. I am taking iron supplements but still feel very weak. Any suggestions on when I might get my strength back? I still don’t feel all that great but the bleeding is gone. I am eating a good amount of food all SCD approved. I have a very full feeling in my intestines and feel somewhat bloated. Not sure if this is due to the food changes I have made or more Prednisone side effects. Any suggestions?

        • bev September 29, 2013 at 11:13 am #

          Keep on keepin’ on Ann. We must get you back on track. This will work, it just takes longer than we want it to.

          I am back in remission after that mini flare a couple months back, but I really didn’t think that it was going to happen. It took a month and a half! I’m there now tho!!

          • shelly in maine September 29, 2013 at 4:00 pm #

            :-)

          • Graham from England
            graham lee September 30, 2013 at 2:38 am #

            Hi Ann,
            Just a thought with your bloating and feeling of fullness.. I recently had 2 colonoscopies (not on the same day), both had poor preps though god knows I tried. This is probably common knowledge but iron tablets can constipate us and they asked if I took a supplement as well as the prep instructions stating to stop taking iron tablets 5 days prior. Once again an example of contradicting supplement advice I’m afraid but worth considering maybe. Another example is digestive transit times, with some of us believing we should slow things down where as you probably know I prefer to speed mine up.

            BTW, I have had chemical tests provided on two of my “better” but less effective Evoo’s provided to me. They will also be testing 2 of my poorer quality oils that were more beneficial to shed more light on which components are helping and those that are not.

  14. Don
    Don September 26, 2013 at 11:59 am #

    Hey everyone! Weird because I felt like I was going into a flare before I had my colonoscopy last month. I have had 2 very severe flares so far and I never want to get that bad again. I just wanted to die and have it over with in 2011. This time started myself on 60mg prednisone and my doctor prescribed 2 Lialda pills a day and have avoided the flare. I plan on doing the home FMT in 2 weeks as I am healed up now and feel ready. Here is a link I found for tapering off prednisone. http://www.mpkb.org/home/othertreatments/corticosteroids/weaningoffsteroids.This makes sense to me. I have had problems before once I get down to 5mg/day. It seems like the Lialda is making a difference but it may just be the prednisone. I am going to stay on the meds through the fecal transplants and then wean off and hope for the best. I hope you all feel better soon. Nobody should have to a suffer like this.

  15. Don
    Don September 26, 2013 at 12:01 pm #

    Let’s try this link:
    http://mpkb.org/home/othertreatments/corticosteroids/weaningoffsteroids

  16. Graham from England
    graham lee September 26, 2013 at 12:26 pm #

    Ann, just in case you are on the green tea, be careful as it can restict folic acid absorption. Colitis and Asacol does this too so a combination to be cautious of….

  17. Sharon September 30, 2013 at 10:41 am #

    Ann, I am also extremely weak right now. The prednisone can really zap us. My doctor says its like sending in a bomb that wipes out the bad but does a lot of damage in the process. Right now, I finally gave in and started taking a 1/2 an Ambien for a few nights to get some sleep. Last night I didn’t take it and I was up most of the night. Since the kids have been in school today, I have slept or laid on the couch all day. I finally went to the store for some veggies and meat for my GAPS diet and now I am wiped out again. It takes time. A lot of time. I am trying to find the positives, like that I can now wear my 13 year old daughters ripped up jeans since I have dropped 18 pounds in 6 weeks. I am trying to focus on my soul, nourishing my body, and not feeling guilty.

  18. Ann September 30, 2013 at 5:55 pm #

    Hi Sharon, Never feel guilty. This is disease that can consume our bodies without any of our control. If someone doesn’t “get it” that’s their problem…I am so fortunate, I have family, friends and co-workers that are very understanding…I did not even get the feelings of guilt when I was off from work for five weeks due to this flare…maybe just a little. I have given myself permission to take the Ambien as long as I am on the Prednisone. When I am no longer taking Prednisone, then I will count on my natural abilities to fall asleep. I bet you are the coolest Mom in town wearing those ripped up jeans! I love your idea of focusing on your soul, nourishing your body and “guilty” what’s that?..no longer in our vocabulary, period. Thanks for reminding me it takes time…I’m not the most patient person in the world when it comes to feeling better. I am even starting to go to the store and doing some shopping. I love the Salvation Army and spent about 2 hours there on Saturday. Now that’s hard work! Take Care For Now…Ann
    Graham, Thanks for the info on the iron…I might even start cutting back on that…I had some blood work done and my iron levels are okay…the darn prednisone is not helping with the weakness…I am anemic too. Keep working on the miracle evoo. Bottoms Up! Ann

    • shelly in maine October 1, 2013 at 3:17 am #

      hi Ann, Sharon and all…
      Patience…yeah! Appreciation of the little things…the gift of UC. Adam just wrote a great post the other day on “Fresh out of the hospital story” The little things sometimes are the big things. Just walking and doing everyday things will bring your strength and stamina back. I also agree with Graham about the iron…I have always heard it can be troublesome for UC’ers/IBD’ers. Find foods rich in iron and in time..damn patience thing…you will get there.
      Hang in there…focus forward and stay positive…and remember…baby steps! :-)
      Best, Shelly

  19. Ann September 30, 2013 at 6:21 pm #

    Don, Please keep us posted on the fecal transplant. I am going to ask my GI about it on Monday. Wow, I think 60 mg of prednisone is a lot just to avoid the flare. I hear what you are saying about wanting to have it over with…I was there on Labor Day…I was having diarrhea on the toilet at the same time I was vomiting in a bucket! Not a pretty sight! Are we having fun yet? ttfn ;)

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