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Questions After 6-weeks of SCD and Reduction of Meds

me in Hawaii

me in Hawaii

Introduction:

I am a 61 year old who has been experiencing UC for the past two years. In the past I have had some digestive problems, but the onset of the REAL UC came when my husband and I sold everything and moved from our family and friends to Paradise…otherwise known as Hawaii. I feel fortunate to have found a good GI here, but in March 2013, I had a severe flare. I have been on presnisone, then budesonide along with Asacol. I started SCD diet in July 2013. Stress definitely affects my UC.

Some more about me:

I work long hours for a high-tech company..been doing this over 25 years. I love my job. I sew home decor, garments, costumes and quilts. I am a voracious reader, especially of mysteries, thrillers and biographies. I play piano and sing in choirs. I love the beach!

Symptoms:

The Prednisone plus Asacol provided nearly complete relief, but once I came off the Prednisone, the frequency, urgency, gas, mucus and bleeding started. Then I was on Budesonide for another two months, decided to try SCD and felt wonderful. I tapered off the budesonide, with my GI’s approval, and am finally off, but inflammation is returning, as are the gas, mucus and frequency…only a little bit of bleeding. My joints are extremely painful. I have gone back to the intro diet, in hope that I will improve again.

Questions After 6-weeks of SCD and Reduction of Meds

  1. Has anyone else had a setback after removing Budesonide? I had progressed to about phase 2 of SCD (not all the foods) and now am back to ground zero again…and discouraged.
  2. The doctor does not want the inflammation to build up too much. He says my UC is probably genetic, as I did not have any infections, parasites or toxic reactions, and it has come on late in life and there is family history. His suggestion is to move to 6-MP to stabilize. Has anyone gone through this same scenario?
  3. I have been extremely faithful to the diet. I have made and eaten the yogurt, and mainly eat the SCD soups and grilled meats or baked meats. I have been overweight for years, but I am losing about 2.5 lb per week. My doctor says that is fine, as I am recording my intake and he can monitor me. I have eaten the homemade pearsauce and applesauce, but I don’t seem to tolerate more than extremely limited amounts of honey or juice or fruit sauce. Is this normal 6 weeks into the diet?
  4. I am struggling to work, keep house, do laundry, plus all the cooking. I feel really tired. I did have the “speed” effect of prednisone and budesonide, but I am struggling now for the last week with just taking the Asacol. Will this improve?
  5. I have no energy to exercise…even walking. Does anyone have ideas? Will this last long? I used to walk about 3 miles per day,and at my age, I need the weight bearing exercise.
  6. Most posts I see are from young people. Are there others my age who have suddenly found themselves in UC world?
  7. I am so thankful for this site and Adam’s dedication. I was feeling so bad that I did not think I could do the SCD…but I am inspired by the stories and Adam’s plan for the diet phases and the cookbook have really been helpful….the specific descriptions of When a recipe can be used has been a Godsend. At the beginning, my brain was too foggy to figure things out for myself. So thank you all for your contributions, encouraging words and organized approach to breaking this cycle in my life.

Medications:

Asacol-helped in the beginning, but I flared anyhow. If I forget to take it, I notice that I feel the rumble, so it helps.
Prednisone-stops the flare, but caused me to just fall, not faint, not be dizzy, but falling. I hurt myself pretty badly in three falls. Very difficult to taper off – it took several months.
Budesonide- stops the flare slower than prednisone, but had fewer side effects for me. I had terrible night sweats and hair loss. Got the inflammation under control, but inflammation recurs after tapering off. Had to taper off in 3 mg increments

written by Barb H

submitted in the colitis venting area





8 Responses to “Questions After 6-weeks of SCD and Reduction of Meds”

  1. AdamSeptember 8, 2013 at 6:04 am #

    Hi Barb,

    Thanks for sharing, and for listing out your questions so clearly.

    Here is a few links that I think will give you some ideas or at least experiences other UC’ers have had with respect to your questions above

    Skips story may help you feel not so alone (if that’s how you’re feeling sometimes regarding age) http://www.ihaveuc.com/my-uc/ Skip was 57 when he wrote that story. And I have to apologize because when I categorize each story, I have not setup a group for “older folks” like I have for “young people”. My fault, and I need to figure out a way to change that without offending anybody. Reason being, there most certainly are many many stories from people here on the site who are over the age of 50. Much less than people under 40, but they for sure do exist. Just not as easy to find and again my fault.

    As for 6-MP being recommended. You may find some stories of interest regarding 6MP at this link: http://www.ihaveuc.com/category/ulcerative-colitis-drugs/6-mp-ulcerative-colitis-drugs/

    Regarding foods and what’s normal. Of course everyone’s different. I myself don’t really recommend that people start up with the yogurt until there is no bleeding at all. There are many different opinions on yogurt and when to add it, but I feel that most people with UC do best when adding it once bleeding has stopped and symptoms are gone or almost completely gone. (But again, everyone’s different, and if its working well for you and you’re confident in that, awesome!)

    As for other foods, it sounds like sugars such as from honey/applesauce are just not working for you yet. Not un-normal, and I wouldn’t stress on that. It most certainly takes time, and for some more than for others to begin able to digest that stuff. (would be interesting what others think on this)

    Being fatigued, struggling to work, clean etc… I for sure remember those feelings, and I believe they are some of the most common signs of active colitis. The constant mental battle of having an inflamed digestive system that’s not yet working properly is taxing on the body in many ways. But again, I would not say that’s uncommon when active UC is present. And with healing, it can and does improve. the added bonus of steroids and the physical bang they give is great, but of course that can’t go on forever.

    Hang in there Barb. As much relaxation as possible is key as well. It sounds like your love your work (great news!!!). I just hope you are not working yourself too hard. let us know how things go,

    -Adam

  2. KimberlyHI
    KimberlySeptember 8, 2013 at 9:34 am #

    Barb,

    Just wanted to say hi…I am also living in fabulous Hawaii! I hope you are feeling well soon! I took 6mp and had some side effects so I am only able to take a really small dose along with other drugs. My hair was falling out, my face broke out, and I was nauseous all the time. Everyone reacts differently though! As for prednisone, whenever I taper off I am not myself for a couple months, I guess the body needs to readjust and in the meantime I was so very tired all the time with no motivation to do anything. And if your UC is starting to act up too that will make it even worse. You will feel better just hang in there! Sometimes unfortunately it takes awhile to beat the flare.

  3. NatalieSeptember 8, 2013 at 6:59 pm #

    Hi Barb!

    I guess we are in the same ‘club’. I, too, was diagnosed 2 years ago when I was 65 years old. I swear I have had colitis throughout the years and never knew it. I always seemed to have problems with gas and bloating. A few years back, I had an upper GI series….PMD thought I had diverticulitis. Those results came back negative but I continued to have the gas and bloating when eating certain foods. Two years ago this month, I started having problems with diarrhea, mucus and bleeding. I didn’t know what was going on…..thought I had cancer. I finally called my PMD and he ordered a stool sample. That came back negative which really puzzled me. So, I made an appointment with my PMD and he did a fecal occult blood test. The results of that test showed evidence of blood. He put me on the anitbiotic Flagyl, but I never improved. In fact, I was getting worse and worse. I finally made an appointment with a GI doctor and was told to wait another couple of weeks before coming in for a colonoscopy. He said they couldn’t do the colonoscopy while I was flaring. So, on October 10, 2011, I had my first colonoscopy and was diagnosed with universal (entire colon & rectum) ulcerative colitis. I was first put on Asacol which seemed to work right away. I continued taking it but hated taking 4 pills 3 times per day…..total of 12 pills per day. I wanted to try Lialda but my insurance would not cover the cost of them. About a month later, I received a letter from my insurance company stating that they would approve the Lialda. So, I started taking it on 11/12/11. I had slight bleeding for another 5 months. On 9/1/12, my GI doctor gave me VSL#3 probiotic samples. I only took them for a couple of days and then stopped as I was experiencing stomach bloat and pain. On 10/26/12, I started a different probiotic which seemed to work for about 3 months . Then, I started getting diarrhea and bleeding again. I slowly weaned myself off the Lialda and was taking the probiotic only (per Bev…God Bless her!) I then switched to a different probiotic on 4/20/13 (Ultimate Flora 15 billion live cultures). The diarrhea stopped but I still had slight bleeding which lasted until July of 2013. I started taking L-glutamine on 7/6 and it almost immediately stopped the bleeding. By the way, I started taking Astaxanthin on June 9th. So, since I have been taking the probiotic, Astaxanthin and L-glutamine, I haven’t seen anymore blood. I have been taking these 3 things as suggested by Bev and have been in remission since. I am now eating almost everything and have my usual ONE bm in the morning! I no longer experience any urgencies after eating. Barb, I am now 67 years old and am feeling great. I certainly hope it lasts forever! Good luck with your UC. I would try the probiotic, astaxanthin and L-glutamine combo….won’t hurt to TRY it! Keep us posted.

    • bevSeptember 9, 2013 at 5:54 am #

      Thank you, Natalie for continuing to tell your (our) success with good bacteria (probiotics)! I am CONVINCED that this is the way to treat UC and keep it in remission!!

      You are fab :)

  4. Juliet
    JulietSeptember 9, 2013 at 6:02 am #

    Hi Barb!

    Lucky to live in Hawaii!!!!

    I had 6mp many years ago, I wasn’t on it for very long. I had every single side effect listed. Felt more ill than during my worst flare up!! So my experiences of the drug were not good and I can’t even say if it stopped the UC inflammation as it caused bleeding, mucus, dark lose stools and pain!

    Currently I’m on prednisone and Asacol. I do not feel Asacol works for me anymore. I get tired, dizzy, nausea, sore and achy joints even when I’m not flaring and on steroids. So I blame Asacol for lots.

    I’m trying the SCD too. I also have a problem with all sugars, I most certainly have a candida (yeast) overgrowth. I’m also convinced I’ve some bacterial infection going on. Despite the fact that test keep coming back negative.

    Just wondering if you’ve ever considered seeing a naturopath to compliment your treatment?? Quite often they can suggest things that western medicine just won’t do.

    • bevSeptember 9, 2013 at 6:08 am #

      I had those same side effects while on asacol. Dizzy, nausea, total body pain…ugh!

      I will NEVER take meds for UC again…ANY MEDS. Fecal transplants and / or probiotics only for me!! Meds do not work for long, if at all. Also, who knows what the LONG TERM side effects might be.

      Good bacteria is key. The medical community is realizing this, I think. UC ers are dropping their meds and their doctors’ appointments like flies and opting for safe and natural methods!!
      Power…we have it ourselves…

      :)

      • Juliet
        JulietSeptember 10, 2013 at 8:11 am #

        Bev,

        I’m in total agreement with you! I have always wanted to take the more natural path. But was soooo scared due to the brainwashing from medical (western) science. I used to get regular massage, reflexology and acupuncture when I lived back in the UK. Plus my diet was much healthier than it had become here! I am so glad I discovered SCD and this site. The yogurt is helping me more than capsule form probiotics seemed to in the past. I’m booked in with naturopath too and I’m going to get massage again. Treating the whole body with things that will help it to heal and not throwing lots of nasty chemicals into it that don’t work!!! I’d be up for fecel transplants and I don’t even consider the ‘yuk’ factor some people are going on about!! Xxxx

        • bevSeptember 10, 2013 at 8:29 am #

          Juliet, I could not agree with you more!

          That is so fab about the yogurt and how it’s working for you. UC is ALL about the loss of good bacteria…so why ‘treat’ it with immune suppressors?? It makes absolutely NO sense at all. I wish that we could all realize this and become advocates for our own health. Medicine is making a fortune on bowel conditions, when all we really need to do is to replenish our good flora that we have lost along the way.

          UCers all have to start DEMANDING natural treatments, like FTs, which, by the way, I am convinced will soon be available in a synthetic enema form, sans the ‘yuk’ factor, for us all to do at home! I just know this is going to happen. Then, as the symptoms of UC start to appear, we will simply do the human probiotic enema and not need to do another until the good bacteria is lost again and the symptoms appear again, and then we will do another. Simple!

          Cheers to you Juliet…you are informed and have taken charge of your well being. That’s true power over your own life! Great feeling, huh?

          Bev

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