Meet Cameron:
I am a 23-year old male who is passionate about education, wellness, and culture. I am a certified teacher and am currently looking for full-time work.
My Symptoms:
None.
My Story:
I am sharing my story on one of the best days of my life thus far; I just returned from a routine colonoscopy, and for the first time since I was diagnosed with UC in 2006, I am inflammation-free. My hope is that all those who are currently suffering become inspired by these success stories… Please put yourself first and take your health and wellness seriously. We all need to be advocates for our own health– talk to many health professionals, ask questions, and do research… I hope that my story gives you some ideas for your own recovery plan.
In the Spring of 2006, during my final year of high school, I suffered from intense stomach pains and cramping, and began to notice irregular bowel movements with increasing amounts of blood and mucous. In addition, my joints began to swell up and became so sore at times that I was unable to use whatever part of my body was inflamed. I was diagnosed with pan-ulcerative colitis shortly thereafter, which means that most of my colon was inflamed and covered in ulcers. In addition, I was diagnosed with peripheral arthritis, which is common for those of us suffering from IBS, UC, or Crohn’s. The extent of inflammation experienced in my joints has often coincided with the degree of inflammation that is occurring in my colon, which is common for peripheral arthritis.
I was quickly referred to a gastroenterologist and rheumatologist; I learned that both diseases could be treated with the same anti-inflammatory medication- Asacol. This kept my inflammation under control for about a year and a half and I was able to function fairly normally. I changed my eating habits slightly but did not take my condition as seriously because I was able to go into remission fairly quickly with the medication.
In December of 2007, I had my second flareup and this one came with a vengeance. I could not leave the house because my trips to the bathroom were so frequent; eating was not pleasurable at all because I knew that anything I ate would go right through my system and cause pain and discomfort, and result in a significant amount of blood and mucous. My joints began to swell up and I was barely able to move on some days. I tried a few different medications- enemas, increased Asacol, Prednisone- before I was turned on Imuran, which gave me relief after a few weeks. I knew that I would have to make a lot of changes in my lifestyle if I did not want this to happen again.
I began to track all of the food I ate to see if I could associate my pain and discomfort with different types of foods. I still do this now, even though I am in remission. Thus far, I have found the following changes to my diet to be the most helpful:
– Cut out cow’s milk (very difficult to digest)– I drink almond milk and try to only have cheese that is made from goat’s milk. I have noticed a difference in the way that my body feels since I made this change.
– Avoid ALL spicy food.
– Avoid ALL deep-fried food (I still have fries once in a while because I love them… only in moderation).
– Cut down your intake of meat. I have cut out almost all meat- I occasionally have lean meats (chicken breast) but I stick to fish or vegetarian options for almost all of my meals. I never eat beef anymore, as I have found that this is very difficult to digest. I also recently learned that ribs are one of the worst options for people with inflammation, so stay away from ribs or any other fatty meats.
– Snack on dried fruit and nuts instead of fatty snacks, such as potato chips.
– Cut out processed sugars. I try to only eat desserts that are sweetened with natural products, such as honey or agave nectar.
– Increase intake of fruits, vegetables, and legumes.
With my sister
I also began to practice Yoga to calm my mind and body in early 2008; this practice has had incredible effects on my health and wellness, and I would recommend Yoga to everyone, not just those of us suffering from bowel or colon problems.
Again, I was in remission for months until I hit another roadblock. In the summer of 2008, I had another flare-up… not as bad as the flare-up in December but I experienced a lot of discomfort and the worst arthritic pain of my life. I ended up seeing an occupational therapist at this time, who told me that I was very emotionally shut-off… He said that I was holding onto a lot of emotional pain and anger and that I needed to deal with this to become healthier. It just so happened that I was under a lot of stress this summer, but I was not willing to deal with it. I was able to get my UC symptoms under control for the most part through changes in diet and by taking Greens+ (dehydrated vegetables and fruits that comes in powder or pill form) and Prednisone (for a short period of time). Despite my physical health, I had issues with anxiety throughout the following year because I chose not to deal with my emotional discomfort.
It took me until Fall of 2009 to finally go to counseling to deal with my family history and to change my relationship patterns. Up until this point, I had been very concerned with helping everyone else before I was willing to help myself and I had been very closed-off emotionally. Counseling allowed me to get more in touch with my emotional health and I cannot say enough about the benefits that counseling had for my physical health. Almost everyone who I have encountered with IBS symptoms shares certain personality traits and I find that a lot of us are close to ‘Type A’ personalities- overachievers, ‘fixers’- we always try to be the emotionally-strong people in difficult situations… If this describes you, I would strongly recommend having some counseling to sort yourself out. There is nothing wrong with being a hard worker or an emotionally ‘strong’ person but it is important to learn how to become more open emotionally and to figure out how to put yourself first. This was one of the most fantastic remedies I have had for my ulcerative colitis so please consider this option. Our mental health is just as important as our physical health and we need to get rid of the negative stigma surrounding mental health issues. I noticed a dramatic shift in my physical health after my counseling sessions (which ended in the summer of 2010)– I became so much more in touch with my body and my mind and I was able to take my overall well-being more seriously. At the end of my counseling sessions, I experienced a small flare-up- I think because I was afraid of trying to cope with my emotional health without the help of a therapist. Again, I was able to take control of this with diet, Greens+ and by being more in touch with my emotional well-being.
From summer 2010 until now, I have not had any symptoms of my UC (except for a small, week-long flare-up after eating ribs– seriously, stay away from ribs). It is wonderful to feel ‘normal’ again and to be more in touch with my body and my mind. I now know which foods to stay away from and which healthful meals and activities are going to make me feel good and fulfilled. I have come to see my UC as a blessing, as it has taught me how to live a truly healthy life and how to treat my body with love and respect. I am constantly trying to improve my well-being by reading books about nutrition and spirituality, and I believe that such knowledge is power. Please contact me with any questions, as I would love to hear from anyone who is suffering and to share my experience to help out in any way that I can.
I wish you all peace, happiness, and good health.
Where I’d Like to be in 1 year:
Still in remission and inflammation- free… Maybe off of Imuran by then.
Colitis Medications:
A combination of Asacol and Imuran have worked well for me… I have had small doses of steroids (Prednisone) during the worst flareups but I have tried to stay away from the stronger medications, such as Remicade.
written by Cameron
submitted in the colitis venting area
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I am a 23-year old male who is passionate about education, wellness, and culture. I am a certified teacher and am currently looking for full-time work.
Hey C.S.,
Incredible story and super super happy the colonoscopy came back clean! Friggin awesome news and I hope this lasts forever.
Take care and maybe next time we get a shot of you busting out some crazy yoga pose out there in the snow!!
-Adam
congratulations!
hopefully we will all get there one day
Well done you. Happy to say I have not had a flare for 9 months so keeping all crossed.
OMG Cameron!
Your story is so close to my own!! You are wise beyond your 23 years, that’s for sure. I can’t believe that you are in fact, only 23…so much wisdom my friend. I , too, have pancolitis. Although, I sure don’t feel like I have any disease any more.
You have hit many nails on the head in what causes this disease to be, and recur. Bad eating, stress, perhaps the use of antibiotics (which I believe some, or alot of people are very sensitive to), other medical drugs…
I have managed to attain and retain remission without any of those nasty drugs at all! I take a good probiotic once per day, aome L-glutamine powder onder per day, and a 4mg capsule of asatxanthin, which is a natural anti-inflammatory, once per day. Three little natural things, and no more worries of what those UC drugs might do to me in the long run.
For me, the asacol that I was on for 13 years made me feel alot worse. It workes at first, for about two years, and then it just seemed to take a 360 degree wrong turn, and make my symptoms worsed Drugs, and me, do not get along. Since I think that I actually got UC from taking the drug accutane 4 times in my late twenties (I am 49 now), I do not wish to try one drug after another for UC any more. Just my opinion. Who knows what they will do to our bodies in the long run, right? After adding that probiotic, and taking it for a couple of months, and finding that I felt so good, I decided to just get off of the 12 asacol pills that I was taking every day…against doctor’s advice, of course. When I went off of it…everything got even better! Joy!!
Thank you for sharing your wonderful and uplifting story. Whatever works for each one of us is the best thing that could happen! Isn’t it fantastin to be symptom free!
Cheers,
Bev
hi bev:-)i hv bn reading ur msgs to other UC er ur incredible:-)u r m inspiator u r just sooooo cool,after i join ds website i feel energize well low but whn i read ur msg n hv hope smday il also be out inflam free:-)n d best part for me is i can eat all d food i love:-)like chicken,salmon,tuna, cottage cheese,yogurt, n d supplement i tk ilove it:-)
Hi Bev,
I hope this finds you well. I really enjoy your posts and messages of encouragement on this site. Just wondering how you are doing?
I have also been meaning to ask what type of probiotic you use? I recently started daily use and am enjoying the benefits. Thanks for your ongoing advice and encouragement in the iHaveUC community :-)
Take care,
Cameron
Thank you to everyone for your warm support and encouragement– it means a lot.
Adam- thanks for the incredible work that you do. This forum that you have created has changed all of our lives for the better. I think you might have an interesting idea brewing with yoga in the snow… SNOWGA (sorry- couldn’t help myself).
Erin- your story is incredibly brave and inspiring. Your courage has taken my breath away. Please feel free to ask me any questions and I would be happy to share some more ideas with you, although I can tell that you are incredibly mature and on your way to getting everything under control. It was tough enough getting diagnosed when I was 17, so I cannot even imagine what it has been like to have such a long struggle. Your positivity and determination will bring you to good health, I am sure of it.
Shirley and Bev- your comments on other people’s stories and personal experiences have helped and inspired me so much. I have written down a lot of your recommendations and I look forward to continued improvement as I begin to slowly take myself off of the medication over the next few years. Wishing you both continued health and happiness.
I also forgot to mention one recommendation to all of my fellow UC-ers…
When you are taking prednisone, please STAY OUT OF THE SUN! I did not realize how sensitive your skin can become when taking larger doses of prednisone to calm a flareup. My trip to the Dominican in 2009 resulted in some of the nastiest burns and blisters I have ever seen– even on parts of my body that were not exposed to the sun. I wish I had read all of the precautions prior to my trip but such is life… Prednisone can caused increased sensitivity to the sun and thinning of the skin– and I experienced both of these with painful results.
Wishing you all peace and good health!
Hey Cameron. Thanks for sharing your story.
Let me know how you went about finding a good counselor or someone to talk to. You’re assessment of personality types with UC applies to me for sure.
Thanks again.
Brent
Hi Brent,
Thanks for your feedback. I’m so glad that you are looking into this avenue as a form a treatment. Therapy truly changed my outlook and helped me to put myself first. I have much healthier relationships with everyone in my life as a result.
Luckily, I was still in university when I began therapy and we had counselling services included in our tuition. I ended up finding a fantastic therapist on the first shot but it may take time to find the right match. If the dynamic does not feel open and safe for sharing, look for another counsellor until you find the person who you can connect with.
I live in Canada, so I am not sure if the resources I could give you would be helpful but there should be online databases for your area. Also, depending on where you work, there is typically therapy available in the workplace if you ask your HR department. If you are having trouble, let me know.
Wishing you all the best,
Cameron
Hi Cameron,
My 3 year old daughter was diagnosed with UC in December 2012. She is now experiencing her first flare, its so hard to watch her suffer through the symptoms. She is prescribed prednisone for the flare and i hope it helps it get better. As her mum I am utterley distraught seeing her go through it. I get this sense of terrible sadness and a sense of grief for her health. When she says “mummy i have a sore belly”, i feel so sad that i cannot make it better. Its all still very new to us (me as her mother going it through it with her) and I find it hard to accept. She is so young and has a lot of flares ahead of her I guess. I dont know how I am going to get through it emotionally, I feel so alone as i dont know any other parents going through it.
Im not sure if you will see this email but i feel I really need some help and some words of encouragement. She is also on Imuran and I am not keen on giving it to her, but i have no choice I guess.
Regards,
Karen Hardiman
Galway
Ireland
Hi Karen,
I apologize that I did not see your reply earlier. I cannot imagine what it must feel like to have such a young child suffering with UC; it is difficult enough to deal with as an adult. But I am sure that your love and support will ease the pain and discomfort for her. I empathize with your sadness and grief but I am sure that she will get through it. Did the prednisone help with the flare? How is she doing now? Is she taking Imuran?
I have connected with quite a few people with UC and I have heard so many different stories. She might enter remission sooner than you think, so it is important to never lose hope. I live symptom-free now and hope to stop taking Imuran sometime next year. I am currently living and teaching in China until June- something that I have always wanted to do but I was afraid of how the change in lifestyle and diet would affect my UC. I feel better than ever! I have learned how to take care of myself properly and I feel empowered to do anything. I now see my UC as a blessing because I learned how to take care of my body and mind at such a young age- something that many people never learn how to do.
I hope that my story gives you hope and encouragement for your daughter’s future. My UC does not hold me back from living a normal life at all. As long as your daughter gets the care and support that she needs, I think that early intervention will have an incredible effect on her health and her life in the long-run. She is lucky to have such a supportive, loving mother like you.
Please let me know if you have any questions and I would be happy to help.
Sending you and your daughter peace and good health,
Cameron
Hi K.Colney and Mike,
Thank you for your feedback. I am so happy that my story is giving you both hope. I am sure that you will find peace and good health in time. The most important thing is that you look for the root of the problem and get the help that you need. It sounds like both of you have had a very tough time with anxiety, which is very common for those of us with UC. Therapy is one option that could help you both find the true cause of your anxiety (whether it be past trauma, family history, a troubling relationship, etc.). As much as we all focus and obsess over the symptoms of our disease (I know how much I obsessed over stopping the bleeding or wanting a solid BM), what we really need to look at is the root of our depression or anxiety– the destructive mental patterns that we have taught ourselves.
Start with finding a therapist and see where that journey takes you. Make your physical AND mental health a priority. A few fantastic resources that I have found very helpful to change negative thought patterns and to positively impact my relationships are ‘A New Earth’ by Eckhart Tolle and ‘Broken Open: How Difficult Times Can Help Us Grow’ by Elizabeth Lesser. These authors have powerful messages that can change the way that you think and live.
When I look back at my most troubling times with the disease, I realize that I have grown and learned so much by going through the struggle. I have been opened up and healed in so many ways because my inflamed body told me that my mind was disordered. I hope that in time, you can both look back at this difficult time in your life with the same gratitude that I have developed. We are lucky enough to have a body that is sensitive to the needs of our mind. Some people go throughout their entire life without facing the pain that is beneath… Those of us with UC do not have that option if we want to get better.
Please keep me posted on your progress.
Wishing you both peace and good health,
Cameron
bev, what brand of astaxanthin do you take? i really want to start taking it but i noticed i have a problem with fish and krill oil- at least the brands i have.
hi i cn relate to ur story,u inspire me now il do just what u say think n love myself.i was always too worried about other people.now il tk ur advice:-)yeepie today il b discharge fr d hospital..n ya im doing yoga instructor course m trainer toldme i cn complete anytime when m fit,just before i gt into m flareup i paid for m fitness course personal fitness trainer ya tryn to change m career n lifestyle n God gave me chance:-)i had bad flareup in 2006,2009,ds time twelve times motion n now down to no bleedn n two times :-)but i gt anxiety attack so emotionaly m strained ds time.m sister who hv bn wt me always force me to do surgery coz she knows m neglegence but now apologize n said u only have to take extra care n know ur body :-)so now m future is bright m look forward to love myself:-)n m doc made me promise il c him evry two months n if i neglect m med he vl not pick m phone call,he hs bn supportive emotionaly coz ds flareup effect m mind more then m body till two nights back i was even thinking of running away from d hospital. ..well thank God now everything is fine n m very happy.i dont know if u vl read ds msg but i do feel gud writing m thoughts m happy that Adam made ds website if not for ds i feel nobody here around me understands me, m relief i can write n even come in contact wt UC pateint besides whn in remission i live vry normal life:-)thank u
Hi Bev
Which probiotic do you use? I heard proboitic drink made from ricemilk is best. I have just started a proboitic drink called Symaprove. It is too early for me to say if it is working or not. I am on asacol. It has stopped working for me and I am not sure what to do. I took proboitic drink made from dairy milk 8 months ago but I think that caused my flare up and I am still trying to control it. Should have realized milk is not good for me. Went on a gluten/wheat free diet a month ago, but things got worse. I have read on-line an article recently high starch foods are not good for you. The corn bread apparently is high in starch which I was using as a substitute.
Just eating plain white rice with the starch drained and a dash of shallow fried onions and chicken and whole meal bread toasted now for breakfast. Bread needs to be toasted for it to digest easily. Something to do with the yeast being cooked.
Thanks
ashok
Love reading stories like this. Whenever I read basically “cure” stories like yours and Adam’s, it makes me so optimistic. I’m 22 years old, but I suffer from extreme anxiety and depression, even with medication. The biggest thing I realized that causes my anxiety attacks is my health and right now, Ulcerative Colitis is the biggest health obstacle I have. With each passing day and with each new invention or cure, I have hope that there will be a cure for UC in the near future. I dread the future and the thought of getting colon cancer or having my intestines removed and using a colostomy bag. The thing that helps me sleep at night are stories like yours and the hope that soon, a medication/medicine will be created that will rectify (no pun intended) the linings of our colon and completely cure this disease.
Hey, it happened with Cystic Fibrosis (my mom’s friend has CF and she started taking this drug called Kalymeco and she feels “100%.” Researchers say that it’s not just a thing to put CF in remission, it’s an actual cure!) and that’s an autoimmune disease as well.
Hi K.Colney and Mike,
Thank you for your feedback. I am so happy that my story is giving you both hope. I am sure that you will find peace and good health in time. The most important thing is that you look for the root of the problem and get the help that you need. It sounds like both of you have had a very tough time with anxiety, which is very common for those of us with UC. Therapy is one option that could help you both find the true cause of your anxiety (whether it be past trauma, family history, a troubling relationship, etc.). As much as we all focus and obsess over the symptoms of our disease (I know how much I obsessed over stopping the bleeding or wanting a solid BM), what we really need to look at is the root of our depression or anxiety– the destructive mental patterns that we have taught ourselves.
Start with finding a therapist and see where that journey takes you. Make your physical AND mental health a priority. A few fantastic resources that I have found very helpful to change negative thought patterns and to positively impact my relationships are ‘A New Earth’ by Eckhart Tolle and ‘Broken Open: How Difficult Times Can Help Us Grow’ by Elizabeth Lesser. These authors have powerful messages that can change the way that you think and live.
When I look back at my most troubling times with the disease, I realize that I have grown and learned so much by going through the struggle. I have been opened up and healed in so many ways because my inflamed body told me that my mind was disordered. I hope that in time, you can both look back at this difficult time in your life with the same gratitude that I have developed. We are lucky enough to have a body that is sensitive to the needs of our mind. Some people go throughout their entire life without facing the pain that is beneath… Those of us with UC do not have that option if we want to get better.
Please keep me posted on your progress.
Wishing you both peace and good health,
Cameron
Thanks Camerom. I recenly (about 2.5 months ago) got on imuran and finally off the pred which was about to kill me. I’m having great results with an imuran/sulfasalazine combo and am in almost complete remission after suffering a flare up at the beginning of this year. My body is returning to normal. The terrible acne I suffered on my body from the pred is starting to heal and clear up. As bad as it was though, i think it will be at least a year before the dark spots go away and some may never go away but I hope they do. The only lingering effect (and actually it’s probably worse now) are the arthritic symptoms since I got off of the prednisone. I figure it’s just my body getting used to not being on anti inflammatories and getting back into the swing of producing it’s own natural cortisol…I hope that’s the case anyway. I practice and teach jiu jitsu and it’s really hard to get excited about it when you feel like you’ve got an 80 yr olds hips. Anyway, I’m glad you’re doing good and hope it stays that way for you and me. I have to get serious about my diet though. Ever since I started getting “normal” with the Imuran, I’ve went on an eating splurge of all the worst stuff. I’ve tried to cut out milk and have done pretty good with that but milk, especially chocalate milk, is a big weakness of mine. I also love ribs but haven’t tried them since reading your story and experiencing remission, aftraid of what might happen but I have been real bad about eating fried, fast food, drinking cokes and what not and generally just not watching what I eat at all. I’m afraid it’s going to come back and bite me and it scares me because this last bout, almost killed me, especially the prednisone which I was on for over 6 months on doses as high as 80mg…I never want to touch that stuff again.
Take care and God Bless,
Andy
Hi Andy,
Thanks for your message of hope. I am sorry to hear about how you were affected by the prednisone but I am very glad to hear that you are doing well now. It is wonderful that you were able to get off of the prednisone- it is not a friendly drug to be on for an extended period of time.
I feel your pain with the arthritis– it was difficult to engage in any physical activity during my worst flare-ups. I think it is fantastic that you are doing your best to continue with the teaching despite the pain– it is better than letting the disease hold you back. I used to be in martial arts but found that my body reacted better to yoga after being diagnosed with UC. Have you talked to your rheumatologist about options to get the pain under control? My doctor put me on a small dosage of Asacol (I had stopped taking it when I switched over to Imuran), and I rarely have severe pain anymore. I hope you are able to find peace from the pain soon. Ultimately, it would be nice not to have to rely on medication but I think it helps to take away the symptoms so that we can focus on what really needs to be healed in our minds.
I know what you mean- at times, I have felt the need to binge on unhealthy foods when I am feeling better. However, after going through quite a few relapses, I have come to realize that it is not worth the pain. When I became more in touch with my mind and body, I realized that I actually felt awful after eating large quantities of fatty or sugary foods, even if they did not cause an immediate flare-up… My body becomes bloated and tired and my mind feels cloudy. I find I have a negative association with many of the foods that I used to think were “comfort foods”. Of course, I still love having dessert or fries once in a while but everything needs to be in moderation in order to maintain remission.
Keep me updated on how you are feeling.
Wishing you peace and good health,
Cameron
SMALL UPDATE:
Hello UC friends,
Still feeling wonderful and inflammation-free! I had an appointment with my gastro last week to follow up on my colonoscopy. I was hoping to get off of the Imuran altogether but he would rather keep me on a light dosage to maintain remission for an extended period of time. He says this will reduce my chance of getting colon cancer in the future, which I completely understand and respect. I am very lucky because the Imuran seems to have reacted well to my system and my white blood cell count has never been dangerously irregular over the past few years. I still hope to be medication-free in time but I am trying to be patient.
Thanks to everyone for your kind words and support. Keep in touch!
Hi Cameron, I was impressed with your positivity fighting this disease. I was diagnosed in 2006 and had each year flare/remission cycles. I feel my body is so weak.. I started taking 1500 mg mesalasine (pentasa) when I was diagnosed. The symptoms went away quickly, but then flares started to show up, so I had to use prednisone each single flare since nothing else had worked. I notice a quick improvement each time I take this med. Since the last flare I started with azathioprine 100 mg (imuran) with 2.4 g mesalasine (mezavant/lialda). I have been in remission for about 1.5 year. But now as I’m typing this I’m suffering from bloating and I have been in bathroom around 10 times today feeling the urge to go. I raised the mesalasine dose to 4.8 g as my MD recommended, I have been on this dose since a week and symptoms are going worse.
I cut off coke since 2006 but couldn’t stop on chocolates and fries. And I think that led me again to the flare stage..
I wanted to ask you what would you do in the case of severe symptoms? Is prednisone a must or can I control the symptoms by other means like diet or raising the mesalasine dose as I did?
Thanks for your support and willing to help
Hi Norbert,
Thanks for your comments and encouragement. I feel your pain and can empathize with what you have been through. I understand how frustrating it is to experience constant flare-ups, and to feel like your body is always weak- it can be very isolating, depressing, and debilitating. Just never lose hope because you WILL fight through it and you WILL get better. The fact that you were in remission for 1.5 years is an incredible sign of the progress you have made and the good steps that you have taken to ensure that you recover.
To answer your question, in the case of severe symptoms- first, I would do whatever it takes to get the flareup to stop. The longer you have a flareup, the greater your risk of developing more serious problems in the long-run. I tried quite a few different medications but the fastest relief always seemed to happen when I took prednisone. Although this steroid is very hard on the body, it can be effective if taken for a short time to stop the flare. You don’t want to become too dependent on prednisone because the drug becomes less effective the more you use it (meaning your flares might need stronger steroids to stop them in the future). In addition to the prednisone, start taking a natural supplement to help your body recover. I have found that Greens+ (dehydrated fruits and vegetables) helps stop my flare very effectively- sometimes better than any medication.
After stopping the flare, get to the root of the problem by addressing the most important component of the disease- THE MIND. Our mind-body connection is incredible and the only way to truly heal and recover is to use a holistic approach. I went to therapy and dealt with my propensity to please others and fix everyone else’s problems- and to learn how to have healthier relationships and to not be so hard on myself. I sorted out issues in my family history that were causing me stress and I am in a much better place emotionally. It is a long, ongoing process but it is so worthwhile to maintain remission. Think about what causes you the most stress or anxiety and try to work through it. It is important to STAY in touch with our emotional well-being throughout this process, so I am constantly reading books on wellness and self-help to ensure that my mind stays healthy.
In addition to therapy, I have taken up yoga and practice almost daily. This calms my mind and helps me stay in touch with my body. I now have a good understanding of what types of activities and foods make my body feel good. Try tracking your food consumption to find out what causes your body discomfort- and what makes you feel energized and fulfilled.
Although it is tough to stay away from the foods that you love, I would avoid processed foods as much as possible (i.e. fries and chocolate) until you are in a long stage of remission. I can enjoy small amounts of those types of foods once in a while but I also find that I don’t enjoy them as much anymore because they are not as fulfilling or satisfying as healthier foods. Despite what our doctors might say, diet is so important to get our bodies back on track.
I hope these suggestions help you to avoid increasing your dosage again. Please let me know if you have any other questions or if you would like some suggestions for books on wellness.
Wishing you peace and good health,
Cameron
Hi Cameron
I am currently experiencing a flare up for the past two months. I have left-sided colitis and was diagnosed when I was 18 years old and living away from the home for the first time at university. It was an awful scary experience and one `I would like to forget!
Well Asacol has always worked well for me and I took it for a years and had a 7 year stint of being in remission! However after I suffered a miscarriage in late 2011, I suffered a big flare up. I was devastated as I thought that the disease had gone away for good! But I was su emotionally and physically drained after the miscarriage that I am not surprised I flared up. Anyway I got back to normal after two month treatment on steroids and asacol. I then got pregnant and had a very successful pregnancy and delivery with no flare ups. I think pregnancy really helped my symptoms. And I took asacol throughout.
However since giving birth, my colitis symptoms have changed. I no longer have bad flare ups where I am running to the bathroom and bleeding a a lot. I now have what my GI doctor calls ‘grumbles’ of colitis i.e mild symptoms of bloody stools and slight left sided pain with three BM per day. So yes it is liveable but it does not go away and the medication is not responding as well anymore (not even steroids). SO there has now been talk of starting me on Imuran. I am absolutely terrified of this as I know it will affect my immune system (which is pretty good at present, as I very rarely get ill apart from with the colitis) I was wondering if you could alleviate some of my concerns.
Do you find you get more colds/flu symptoms with Imuran? Do you have any side effects to the drug? Does it affect skin sensitivity for you? How long did it take to work for you? I am hoping to have another baby once I get this illness under control and I am scared of the effects of the drug on the baby ad in breastfeeding. It was safe to take Asacol throughout my last pregnancy and through breastfeeding but I am not sure that is the case with Imuran.
One things is for sure – my GI said that people who take Imuran see a vast improvement in their disease and quality of life. I am just not sure whether my disease is bad enough for me to take something that strong. But something needs to stop these blood stools!
I just need some reassurance in starting Imuran.
many thanks
Rachel
Hi Rachel,
I am so sorry to hear that you are experiencing a flare-up at the moment. Our stories sound very similar in terms of age of onset and patterns in medication use. Initially, Asacol worked very well for me but I eventually needed something stronger.
I am sorry to hear about your miscarriage. It is not surprising that such stress would lead to a flareup… and now, after giving birth you are experiencing the same thing. Flareups always seem to coincide with big life changes or stressful events. I just got over a minor flareup myself (like one of your “grumbles”)… I have been teaching in China over the past year and we are coming to the end of the school year; I have been very busy and started to fall off the wagon with my healthy eating habits. Stress mixed with poor food choices inevitably leads to disaster for those of us with UC. I found that as soon as I validated all of the stresses in my life and readopted healthy routines and eating habits, my grumble disappeared and I am back in remission again.
As much as I understand all of your concerns about Imuran, I think it is really important for you to stop the flareup as soon as possible and get back into remission again. The longer our flareups last, the higher our chances of developing more serious colon issues. I hope that my experience with Imuran can alleviate some of your concerns. Luckily, I have not had ANY adverse side effects since I started taking it in 2008. I go for bi-monthly blood tests to ensure that my white blood cell count is not dangerously low. It has been a little abnormal a few times– but nothing to be concerned about. My immune system is more susceptible but I honestly have not noticed a significant change in how often I catch a cold. I have become more obsessive about keeping my hands clean and staying away from people who are contagious. Further, I would definitely talk to your doctor about taking Imuran during pregnancy… I’m really not sure about that. I just hope that you are able to get your UC under control as soon as possible. The drug takes a short while to work within your system but you should see a change within a couple of weeks.
I have a lot of compassion for you because I experienced a lot of the same concerns prior to taking the drug. But it has made such a positive difference in my life and I hope it does for you as well. My wish is to be medication-free at some point but we have to take care of the inflammation before we can move forward.
Please let me know how you are doing and if you have any more questions or concerns.
Wishing you peace and good health,
Cameron
Rachel,
One more suggestion for you… with my latest minor flareup, I started taking probiotics, which seems to have helped my symptoms. I am currently taking 3/4 teaspoon per day (mixed with water) of Metagenics UltraFlora Advanced Powder Probiotic Supplement. While you are in the process of making your decision about Imuran, why not give it a try? Let me know if you have any success :-)
Hi Cameron,
I agree with you being scared of taking Imuran, I have the same feelings, I wonder what it is doing to my dna, my liver and if it will affect my ability to have children in the future.And at every appointment I discuss with my doctor about coming off of it. I don’t want to regret my decision of taking an immunosuppressant, in 10 years time.( if they really affect/ modify my body like I think they do) I think that I need to do some research and really find out what the medication does,how it affects the human body as a whole,so I can put my mind at ease. I am concerned with the risk of colon cancer as well. My doctor recently explained to me, that it would be more likely that I would get many other types of cancers, based on statistics but it still doesn’t sit well with me. If I can prevent it I will :)
I have been on Imuran for 3 years, and I am hoping to try some of you diet tips above. I have read and found that stress really does have an affect on flares.
I think I will have to get back into yoga myself. And continue to relax and love myself.
I have been flare free throughout these years for the most part. So I guess you could say I am in remission. My doctor doesn’t want to take me off of Imuran, because I had such a severe flare at the beginning. We have lowered the dose to 150 mg a day, from 200 mg,and 1 bm a day. Which I am happy about. I would like to somehow be able to go to my next appointment with enough evidence that will convince the dr to let me taper down again or go off imuran completly. I know it is said that benefits outway the risks, but I think I could take a leap of faith. I am also on Asacol,4 a day. I was hoping that would keep me in remission.
How is your request going with stopping imuran?
Ps. Do you know of any non prescription products that are helpful with uc ??
New Year! New beginnings!
Thank you for sharing your story, it was truly inspiring.
Erin
Hi Erin,
Happy 2014! Thanks for your message. I am so glad to hear that your UC has been stable lately. I completely understand your concerns about Imuran… I think it is important for us to stay vigilant about the effects of any meds that we are on, so it is great that you are being a strong advocate for your health.
I am currently teaching in China on a ten-month contract. I have had perfect colon health since I have been here, so the Imuran and Asacol are serving me well. I was always nervous about living abroad because of the possibility of different foods setting off a flare-up but my body has stayed strong and healthy. When I am back in Canada this summer, I will once again begin the conversation with my doctor about taking myself off of Imuran. He is going to do a scope this summer to determine if it is an option for me at this point. He has expressed concern because he has heard of people in remission taking themselves off of Imuran, and going into severe flares, ultimately resulting in colon cancer… I understand wanting to take precaution but I’d be willing to take the risk to be off of such a strong medication. My body and mind feel strong, healthy, and centred and I have not had inflammation in a few years now, so I think it will be a safe option for me at this point.
In terms of non-prescription drugs for UC, there are a lot of natural options to try. I have used Greens+ for years now. It is a mixture of dehydrated fruits and vegetables that can be taken in pill or powder form. It has helped stop flares for me and is also a good way to get energy quickly from a safe, natural source. In addition, the natural product that I am most often recommended is probiotics. If I am given the okay to stop the Imuran, I plan to take probiotics in its place. I have heard of many success stories from probiotic use. Further, I have taken L-glutamine on the advice of Bev (see above); it is an amino acid that works as a “food” for intestinal cells in need of repair. I hope this helps! There are many other great recommendations on this website to check out.
Thanks again for your message. Please keep me updated on your progress with your doctor.
Wishing you peace and good health,
Cameron
Hi Cameron
Thanks so much for your reply.
Well I’m still experiencing this minor flare. I have a good day where I think it’s going and then the next day back to bloody stools again! Soooo fed up as this has been going on for 2.5 months now. I have a Gastro appointment in about 10 days time. If the asacol and rectal meds don’t kick in by then, then imuran it is! I don’t know if you or anyone else has experienced this but did you ever find that the asacol was passing through you and coming out whole the other end?? I find this all the time. To top things off I’ve just suffered a bad episode of gastroentiritis which has not helped the flare at all. I am taking a strong probiotic and psyllium husk too. I just can’t get control of this flare and I can’t think about anything else! It’s driving me and and my husband nuts!
Hopefully next time I contact you it will be with better news :)
Many thanks for your reassurance
Hi again Rachel,
I am sorry to hear that you still have not seen any improvement, and that you just battled another bout of intestinal stress. Yes, I have seen the Asacol pass right through during a flare on a number of occasions. I completely understand how stressful it is to have a flareup that seems like it is never going to end– but just know that you WILL get it under control. I hope you can try to relax and clear your mind because the constant stress about not getting better is just going to make things worse.
Have you tried doing some meditation or Yoga to centre your mind and body? Both practices have helped me to slow my life down and become more in touch with my emotional well being, which has had incredible effects on my physical health. If you need some resources to get started, let me know. I really believe in the mind-body connection, so if you can try to relax your mind, your system will be able to have some relief.
Again, I’m sorry to hear about your struggle but the light at the end of the tunnel is on its way.
Keep in touch,
Cameron
Thanks again for your reply Cameron.
I think the thing I’m finding hardest to deal with is the pain. I’m not running to the toilet every 5 minutes and have about 2-3 bowel movements a day so I know not nearly as bad as others but the pain in my left side is awful and constant all day. It’s only like this when I’m flaring most likely because of the inflammation.
I would love some tips on how to relax as I know that I am constantly thinking bout this stupid disease which is taking me away from spending valuable time with my daughter and husband. I want to be a happy and active mother and at the moment I have no energy :(
Hi Rachel,
It sounds like your situation is improving a little with the frequency of your BM’s– that’s wonderful! I’m sorry to hear about the pain. That is not fun to deal with… Hopefully the yoga and meditation can help you to relax.
My go to resource for yoga is: http://www.yogajournal.com – In the video section, you will find many practice routines for all skill levels. Try to find a teacher who you connect with and search for a collection of their classes. On the website, there is also an option to have a daily newsletter with calming and reaffirming ideas sent to you. It helps give me some time in the day to read and reflect.
There are also some meditation resources on the site at: http://www.yogajournal.com/practice/meditation and you can sign up for a 21-day online yoga/meditation class, where you will get daily meditations and yoga practices sent to your email inbox: http://www.yogajournal.com/21daychallenge/
The Chopra Centre for Meditation also has a lot of great resources to get you started. You can check out some guided meditations here: http://www.chopra.com/ccl/guided-meditations
I prefer when Deepak leads the meditations, and he does a 21-day Meditation Experience twice per year with Oprah, where they send daily meditations and insights to your email inbox. I’ll notify you the next time the program begins.
Hope this helps to start you on a path to greater calm and peace :-)
Keep in touch,
Cameron
Thank you for the web links Cameron. I will check them out :) I may also try bikram yoga which they do near to my workplace. Have always fancied trying that so now a my chance!
Hi Cameron
Well I have been using the links that you provided to me. Thanks very much for those. I do the Chopra centre meditation every night before bed which is very relaxing. I also started the 21 day yoga programme.
Unfortunetly my colitis flare is not giving in. So after three months of the usual crappy symptoms of bleeding, mucus and cramps, I have given in to the dreaded Prednislone. Starting on 40mg a day and will taper every week, if possible. I am kind of relieved though as I feel that this may finally get a grip of my symptoms, even if I have to endure the terrible side effects for a few weeks.
I have already decided that once the condition is getting controlled by the pred (hopefully it will!), that I will start my own maintenance regime. Currently asacol is not working on its own. So `I am going to introduce l’glutamine powder and strong probiotics, as well as carry on asacol. I am a little scared that I will keep on flaring but I have managed a 6-7 year period with no flare up in the past so that’s what I am aiming for! I am reluctant with starting the Imuran, purely because of the effects that can happen during pregnancy. I have been informed by my gastro nurse that women taking Imuran during pregnancy would frequently have low birth weight babies or premature babies. Also, they do not allow you to breastfeed on the drug. So I am very reluctant to take it until at least after I have had all the children I want. Then I will only be responsible for what happens to my own body and not that of a baby. Man, I wish I was a guy! lol!
I feel as though, like many, I tend to obsess about my flare up when I am going through one. Otherwise, I don’t give it a second thought when I am in remission!
Hi Rachel,
I’m so glad to hear that you are enjoying the meditation and yoga resources. I hope they help to calm your mind during this stressful time. I think the pred is a good choice for you to get your flare under control.
I understand not wanting to take the Imuran if you are planning another pregnancy soon. it sounds like you have a good maintenance regime planned. Just try to get as healthy as possible before putting your body under more stress.
Sending you peaceful, calm thoughts… Let me know how the recovery process goes :-)
Hi Cameron
An update in to my latest flare up….I’m still going through it :( I started on 40mg prednisone about 8 days ago and have not seen an improvement in my symptoms. Nights are the worst for me when I will usually wake up about three times to go to the toilet. But after the morning I am usually ok most of the day.
My GI doc got me in for a colonoscopy on Thursday. Good news is that my colitis has not spread since a few years ago and he said it is mostly mild left sided with a couple of patches of moderate colitis near the rectum. I also had a blood test and he said that my bloods are fine. My iron level is good although I have lost quite a bit of weight and my inflammation marker has reduced from 13 to 5. However I am still feeling all the symptoms such as bloody stools, some urgency and approx 4 BM a day. I know now as bad as others but I just want it controlled.
Meeting with doc on Thursday to start on imuran. All my bloods came back ok to start on it. He thinks that imuran will be the best thing for me and assures me that millions of women take it throughout pregnancy and have healthy babies. So I suppose I need to trust his knowledge and to be honest, at this point I just need to get better in myself.
Have you ever had a flare up where the prednisolone has not worked as effectively or as quickly as before? I don’t understand why I have stopped responding to it???
Hi Rachel,
I’m so sorry to hear that your flare is still not improving with the prednisone. I have only used prednisone on two different occasions, so I have not yet encountered a time when it didn’t work for me. But I know it is very common for these drugs to become less effective with every additional use.
That is fantastic news that your blood levels are normal and that there has been no spread of inflammation in the colon. Very encouraging for your overall health and a good sign that the severity of your flare is not getting any worse.
I sincerely hope the Imuran brings you peace and comfort for the time being. Getting your body healthy, with the flare under control is the most important priority right now. Please let me know how your body reacts to the drug. I hope you have the same luck that I have had.
Keep in touch,
Cameron
Hi Cameron
I asked Bev the same question about the probiotic last week. It’s called a Renewlife critical care probiotic. I ordered some too and am taking them.
Cameron,
Also in terms of Imuran, you mentioned that I should see the effects within a couple of weeks use. However most people have said they didn’t see an effect for approximately three months. Did it work faster for you?
Thanks for the probiotic information, Rachel!
Yes- it worked quite quickly for me. I started to see changes within 2-3 weeks. I guess everyone’s body reacts differently. Here’s to hoping that you see changes sooner rather than later :-)
Starting imuran today and feeling a mixture of hopefulness and anxiety about it!
I have had all my questions answered by my GI doc and they are starting me on 50mg and increasing to 100mg in a weeks time after they see if I tolerate it. Apparantly my blood work is good and shows that I should tolerate it.
I have been told it’s safe to take during conception and pregnancy and I can stop it a few weeks before and carry on with asacol before delivery if I choose to breastfeed. Good to know for the future.
Plus as my colitis is only on my left side and is classed as mild with a patch of moderate, they are hopeful the imuran should clear the remaining inflammation and if no flare ups in two years (that sounds like heaven!) and colonoscopy shows no sign of inflammation then I can come off it and stay on asacol.
So looks like I have little to lose and a lot to gain by taking the med so wish me luck! Hopefully I won’t get any side effects!
Rachel…please keep us posted as to your progress with the Imuran. I, too, am having bloodwork today to start it. Been battling this disgusting disease for 18 yrs, and can’t get this last flare under control even on 60 mg pred. I completely hate taking any drugs, but even though I have tried diet changes & meditation, I cannot attain remission. Best of luck to you!
Hi Becky
Thanks for your message. Well I have been on azathioprine (you guys in the US call it imuran) for seven days now at 50mg. I shall be going for my blood work tomorrow to see how my body is taking it. I had blood work prior to starting the drug and the nurse said that I had a good level of gene or something so it looked like I would tolerate it. I have not had any side effects from it that I can see. Felt a little dizzy yesterday for about 10 minutes but that might have been the heat! I shall also be increasing my dose to 100mg tomorrow. So let’s see if I can equally tolerate a higher dose. It’s scary as I feel like a walking time bomb taking this drug. But i have been told my many that they experienced no side effects from the drug so hopefully I am one of those people and it works for me.
I am still on prednisolone to control my current flare which I’ve had going on since march. I was on 40mg for a good two weeks before I saw an improvement in my symptoms so hang on in there. Sometimes it can take a while. I have now managed to taper down to 20mg and seem to be ok. Still get left sided pain for some of the day but the nurse says that is because the nerve endings in the colon have been damaged temporarily due to the active inflammation. Once it settles the pain will stop as it has before.
If u feel up to it, I really feel exercise helps. I run almost every day and feel that release when I do both mentally and physically. The stress just oozes out! Cameron also mentions yoga and meditation. I do meditation that Cameron recommended from the Chopra Centre website. Plus exercise really helps counter the side effects of the prednisone. Osteoporosis is a big risk when taking steroids and so exercise regularly will keep joints stronger and flexible. Also taking a high strength vitamin D and calcium supplement. I take something called Adcal. It also keeps you looking and feeling good which is something you’re not always confident about when taking steroids I.e putting on weight, ravenous hunger pangs and moon face!
I hope you find peace from this terrible disease soon. I think finding the right medication for you is key and then letting them take effect. I am no way out of the clear yet with this flare but am trying to stay positive and count each good bowel movement as a blessing and step in the right direction.
Ok so I have been on Imuran for approx. 6 weeks now at 100mg per day. I am again starting to flare after being well for about a month after stopping the prednisolone. I was hoping the Imuran would have kicked in by now?? My gastro doc told me it can take longer to work and to continue to take it which I am doing. I have no side effects from the drug so far which is something I have been grateful for up until now but I am unhappy that I am flaring again so soon. It all started with my BM’s getting a little looser and then came the pain and two days ago a little blood and mucus. I was advised to start the rectal meds again which I have and they do seem to have helped, especially with the pain. I do not have an urgency and continue to only have 2 formed BM a day.
The gastro doc told me that he will check my blood levels soon to see whether I am at my optimum dose for Imuran. I don’t really want to me taking any more!
It seems to be taking a long time for this flare to quieten down and it is starting to get to me now :( It’s so hard to keep upbeat and positive when you have this disease, especially when you have young kids.
I will just have to hang in there and hopefully the rectal meds will keep things at bay whilst the Imuran eventually kicks in!
Hi Rachel,
I am so sorry to hear about the prednisone not kicking in yet. It affects everyone differently and it sounds like it is just taking longer for your system to respond to the medicine. How is your level of pain right now? I hope you see improvement very soon.
I completely understand that it is difficult to stay positive in light of the debilitating effects of this disease. It is okay to be sad and mad at times- be honest and open with yourself. But just try to pull yourself up and keep moving forward. I am sure that a positive attitude will bring you better health in time. You should be proud of yourself for being so proactive with your health and for taking the right steps to recover. The Chopra Centre is currently doing a 21-Day Mediation Experience about Expanding Happiness… I hope you will take part in the daily meditations to help quiet your mind during this difficult time: https://chopracentermeditation.com/experience
Please let me know how you are doing.
Sending you peace and good thoughts,
Cameron
I think Rachel and I are kinda in the same boat with the flare that never ends! I’ve been on mercaptopurine for a month now in combination with 40mg pred and so far noticed no difference other than now I have a raging case of gastritis (which is, unbelievably, more painful than the damn colitis)! I am not sure if this is the right drug after all and dreading the biologicals, but as Rachel said, doctor is also telling me to give it more time. Guess we all need to hang in there..I do guided meditation with Glen Harrold..(love his voice)….but am going to check out the Chopra site. Need something!!!! Keep us posted, Rachel!
Well the update on me is….. not much change! I am grateful for the fact that I am having soft, formed BM twice a day with no blood or mucus for most of the time. If I do have blood, it’s such a little amount I can barely see it. So grateful about that. But the reason why I know I still have some inflammation is because of the left sided abdominal pain and the tummy rumblings (which I do not get when in remission). The pain is more of a problem for me as it is on/off all day. I am no longer on prednisolone as I finished my course about a month ago but maybe I should have stayed on it. Been on azathioprine for two months now and I am not sure whether it is working or not. I have an appointment with my gastro doc on Wed. he saud he would look at my blood levels to see about increasing the dosage to 150mg per day which I do not really want to do but if it puts me in to a stable remission then maybe its the best way.
You also keep me updated becky!
Quick update! My Gastro doc told me today that after reviewing my blood work, I wasn’t at the therapeutic level for imuran to work I.e not enough of the drug in my blood to work. So he has increased my dose from 100mg to 125mg. He said I should not get side effects on it as I havn’t had any so far and with such a minimal increase unlikely to. Hopefully this increase should kill this flare up for good! Weird question – has anyone else experienced neon coloured urine whilst on imuran? Mine has been. Usually better when I drink more water but still very neon yellow! Is this normal?
Hi Becky and Rachel,
Nice to hear from you two. I’m sorry that you are both experiencing prolonged flareups. I know how frustrating and debilitating they can be… But I’m happy to hear that you are both maintaining positive, proactive attitudes.
Becky- I hope that the mercaptopurine (never heard of that med before) and pred take effect soon. I’ll have to check out Glen Harrold’s meditations. Thanks for the recommendation :-)
Rachel- I’m sure you won’t experience any side effects with the increase if you haven’t already. It must feel nice to know that relief is most likely on its way. Keep us posted!! I haven’t noticed that the medication directly affects urine colour– but maybe that is happening because it is new to your system??? Like you, I find that the colour depends on my water intake. I wonder if that will change for you with time. Is it consistently neon?
Hi Cameron
Yes my urine has been neon coloured everyday since starting imuran. But blood work always comes back fine. I had a blood test yesterday so will see what that says. What dose of imuran are you in Cameron? Have you reduced it throughout the years with success
Hey guys…
I’ve not had any urine discoloration..that is a weird one…but if that is your only side effect..that is cool! Mercaptopurine is basically the same drug that makes up Imuran (which is azathioprine), they just dissolve in the body a little differently.
Question for each of you….what time of the day/eve do you take your aza? I take mine at night and it is literally eating a hole in my stomach so my doc prescribed Prilosec which worked, but for some reason sent my colitis into a tailspin…I am worse now because of it. so I stopped the Prilosec and upped my pred to 60 and am wondering if taking the aza during the day would help. Also, how long did it take before you saw some relief? I am a month into the drug and there is no change..only worse because of the prilo. my doc wants me to stick it out for a bit longer because my next option is remicaide or humira.
Hi Becky
I am sorry to hear you’re UC has got worse :( However now you have stopped that drug it should get better? Why do you say the 6MP was causing a “hole in your stomach”? In answer to your question, I take 50mg Imuran in the morning and 75mg at night after my evening meal. Always take with food or after your meal. I take the higher dose at night because I figure any tiredness felt from the drug won’t matter as I shall be asleep anyway! However touch wood – I have not had any side effects apart from the weird coloured urine!
I have been on Imuran for 2 months now. I also did not feel much relief and was started to wonder whether the drug was working at all. However yesterday my Gastro doc told me that I was nowhere near the therapeutic level for the drug i.e. there was not enough of the drug in my blood to have any effect on me. I believe the level was 157 and the level it should be at is something like 240. So this was most likely the reason why it was not as effective as it should be and there was room for . I took the increased dose yesterday (125mg) and I have really noticed a difference today. hardly any left sided abdomen pain, no gas, no weird colon noises and I have only been for a BM once! Plus I feel it is getting more formed. I do really hope I get better and feel quietly optimistic.
Have you checked with your doctor whether you are at the therapeutic level for the 6MP? It may be the case that there is not enough in your blood for it to be effective and you may just need that extra little boost to kick it in to remission. Worth asking your doc to check your blood work on this and whether there is scope for you to increase your dose.
Let me know how you get on.
Take care!
Well, doc called this eve. And yes, you were right Rachel….I was below the therapeutic level for this to work. However, it is messing up my liver. Normal readings are around 5700…mine is 21,000. I had to stop immediately. I guess I am a failure story. I feel like a rug has been pulled out from under me…I really wanted this to work. i hope you have continued success with this..it’s so good to hear success stories and i pray i get to write one myself someday.
I’m so sorry to hear this Becky. I have a feeling my liver is getting messed up too as why is my urine so fluorescent! But I’ve been told every time that bloods are ok. Let’s see if this is the case with the increased dose.
I do not know yet whether imuran will work for me. I’m still having uc symptoms albeit not too bad but they are still there everyday and bothering me. I’m still waiting for the increased imuram dose to kick in and that’s if it ever will!
I hope we both get relief from this menace of a disease. Good luck :)
Hi Becky and Rachel,
So sorry to hear about Imuran’s effect on your liver, Becky. I hope you find a solution that works for you. Has your GI recommended any other options yet?
I take 125 mg daily as well. I take my dosage all at once– usually in the morning. I used to take more but have successfully lowered my dosage over the past few years, and now am at the lowest therapeutic level. My GI is doing a scope at the end of October, and if I am still inflammation-free, he plans to take me off of Imuran. If all goes well, I will just be on a small dose of Asacol in a few months. How are the UC symptoms now, Rachel?
Hi Cameron
The UC symptoms have not gone yet :( I also take my 125mg dose all in the morning after breakfast. Only been on the increased dose about a week so I guess I need to give it more time to kick in.
Did you have your dose increased when you first started to get to therapeutic level?
When they raised your dose, were you still ok from a side effects point of view?
I reckon I am still not at therapeutic level. The pain seems to be getting worse and I had a little blood today in my stool. Inflammation is still high in my colon (>1800). I am so fed up. Just want it to kick in. I really hope it does soon :(
That is awesome about you having no inflammation! You have gone through some tough times and now you are out the other side all healthy again :) I am thinking of getting some counselling too. I feel as though this disease has got me going crazy and I need to be able to talk to someone so I can handle the psychological effects better.
I will let you know how I get on :)
Thanks again for your kind words :)
Cameron – you could have told me how vile tasting the Greens Plus juice was! lol! I have to mix the stuff in orange juice and knock it back to avoid throwing up! Oh well if it helps its worth it!
Hope you’re well :)
Hi Rachel,
I apologize for not answering sooner. I actually started on an even higher dosage of Imuran at first and have since been reduced. I don’t remember noticing any changes when I switched to a smaller dose. Have you noticed anymore differences?
That is fantastic that you are considering counselling! It is honestly one of the best tools I have used to cope with my UC and to improve my overall wellbeing. Have you found someone to talk to yet? It might take a while to find someone who you feel comfortable with.
Haha- sorry that I didn’t warn you about the Greens+… they have a few different flavours in the powder form but none of them are very enjoyable. I actually take it in pill form now and can’t taste anything, so maybe give that a try next time ;-)
How are you feeling? Any progress since your last update?
All the best,
Cameron
Hi Cameron
I am soooo getting the Greens Plus in pill form next time! Lol!
I am feeling better now thanks :) i think the imuran has started working. I am only having one BM a day and abdominal pain has subsided quite a lot. Still not 100% there yet but I would say 90%!
My first counselling session was just me completely releasing and crying my eyes out! Lol! I was so relieved to get my feelings out to someone who was not rushing me or telling me to “get on with it”. I feel as though I am not thinking about the UC so much anymore and it’s lot absorbing my life as much as it was. I am seeing a cognitive behavioural therapist who has specialised in patients with chronic illness. She is really nice.
I had a blood test yesterday to see whether I am at therapeutic level. So far I have been very well on imuran. No side effects.
I hope you’re still doing well and hopefully you will be off imuran in the near future :) keep in touch!
Well I received my blood test results and I am still tolerating the Imuran well. However my CSR and ESR were slightly increased showing that there is still some inflammation present :( The nurse did say that it may not have anything to do with the colitis but I think it does.
I am feeling better though so hopefully the Imuran is just starting to work and maybe in a few weeks time, the levels may have decreased.
I have not had my 6TGN results back yet, to see whether I am within therapeutic range with the Imuran so that should tell them whether to increase the dose or not.
Hi Rachel,
I am so happy to hear that you are feeling better with the Imuran; it is such a relief to be able to go back to a more normal, peaceful routine. I find I appreciate the little things more now… just being able to go out and not worry about where the closest bathroom is makes me grateful.
I am also glad that you have found a therapist who you connect with… I can relate to your first experience. It is such a wonderful release of the negativity connected to the disease. I hope you continue to find peace and implement new thought patterns through your work with her. I honestly think that relieving my mind has been the best medicine for my UC.
It is great news that you have not had any negative effects from the Imuran!!! It took me four years before I was completely free of inflammation, so just give your body time to adjust.
I have been feeling really good lately- started back at my weekly yoga class last week and I have been exercising more regularly. I have my scope on Halloween, so I will find out then about coming off of the Imuran. I had one small flareup while I was living in China earlier this year but I think it was related to eating an unidentifiable meat- haha, bad life choice! Other than that, I have not had any problems in a few years. I’ll keep you posted.
Take care and be well,
Cameron
Update! Well what a journey this is becoming! Apparently I am in the 15% of the population that does not metobolise azathioprone properly hence why my symptoms were not going. So now I am being put on a drug called allupurionol (treatment for gout!) and being told to reduce aza by half. So now down to 75mg per day. Apparently the allupurinol will make the aza metobolize correctly and get me straight in to therapeutic level. He said I should see results in a couple of days. Not started yet but feeling excited and nervous. The allupurinol is a non toxic, safe drug apparently so it’s better to have that a a smaller dose of imuran which is quite toxic. Let’s see what happens
Wow! That is so interesting, Rachel. I’m glad you figured out why it was not working for you.
I have never heard of that drug but let me know how everything goes. I’m happy to hear that it is non-toxic. My doc is worried because a young man close to my age recently contracted cancer as a result of taking Imuran. I’m definitely looking forward to getting off of the drug. I’ll let you know how my scope goes at the end of the month.
Hi Cameron
I am also really worried about being on the drug and the other drug allopurinol. But then again I have spoken with lots of people who have been on imuran for 15 years plus with no side effects. I am definitely going to use the drug to get better. And then I am also going to come off it. At this point, I just want something to work
Hi Rachel,
I hope this finds you well! Happy 2015 :-)
How are the meds treating you? After close to six years on Imuran, I have finally come off of the drug. It has been almost two months now and I have not seen any changes- feeling great! I am now just on a small dose of Asacol.
I also had a scope last week and am still inflammation-free! Going onto my third year with no inflammation now :-) I just wanted to send you some hope, as someone who went through a lot of the same things you have. I hope the meds are working for you and bringing you peace.
Keep in touch,
Cameron
Hi Cameron!
Great to hear you are still doing so well :) I am so happy you are off imuran now. I wish you a long and continued remission.
Well since I last spoke with you, I have had a pretty bad time. I contracted Cambylobactor which is a bad form of food poisoning and sent my colitis in to crazy mode! That was end of October and had to go on a two month course of steroids. I started the allopurinol and decreases my imuran dose to 50mg.
Good news is that I am now in a good therapeutic range with imuran and I had my blood work and stool tested which showed no active inflammation! Woo hoo! So I’m apparently in remission now. However I am still having some left sided cramps. My GI doc thinks it’s nothing to do with the colitis now as it is not active and suspects it’s either an anxiety thing or mild IBS. Trying to find ways to relieve the cramps like drinking hot boiling water, exercising more and taking psyllium and aloe Vera juice.
I’m pretty sure the imuran put me in remission in the end. I just contracted the norovirus from changing my daughters dirty nappies! It caused horrendous diaherea and vomitting for about 4 days and would have definitely flared up my colitis but it didn’t and I believe it’s to do with the imuran.
So things are fine at the moment. I have a busy year ahead of me as we are moving house and close family weddings so I pray that I stay well.
Keep in touch and let me know how you get on.
Rachel x
So great to hear back from you, Rachel! Thanks for your kind words.
Sorry to hear that the end of 2014 brought you some serious challenges to your health. That must have been very stressful to go through. I admire your strength through all of this, especially considering that you are dealing with your own health issues in addition to all of your responsibilities as a mother!!
It sounds like you have made some great progress with the Imuran. It is a wonderful sign that you maintained remission while the virus ran its course! I hope the cramping settles down. Maybe your anxiety and system will start to settle down now that you are in remission.
Keep me posted about how your busy year plays out. Wishing you continued remission, peace and comfort. All the best to you :-)
Hi Cameron
How have you been? Long time no hear! Lol! I was wondering how you have been getting on without the imuran? I hope that you are still enjoying a long remission.
I am a lot better now. I have remained in remission even though I’ve had a few rocky patches. There are times when my stool is looser and I get worried that I’m relapsing but then luckily I am fine the next day! I have been told that the imuran is working a little too well in my body and my levels have gotten a little high in my last blood test. So luckily they have reduced it and now I only take 25mg a day as well as asacol. Let’s see if it keeps me in remission.
I have been doing yoga for the past 5 months now and enjoyed it so much. In fact I do bikram yoga (hot yoga) and I feel fantastic after my classes. It’s really helped with my physical and mental state and I would say that I am not letting uc run my life anymore.
Well I hope you’re well!
Take care and good health!
Rachel
Hi Rachel,
It’s wonderful to hear from you :-) Sorry for the delayed reply. The past few months have been very busy.
Yes, I am still enjoying remission without the Imuran! I feel wonderful and I am relieved that I can stop worrying about all of the blood tests. I consistently seemed to have a low white blood cell count while on the meds, so I understand the anxiety surrounding that. But it sounds like your doctor has adjusted accordingly, so I’m happy to hear that. I have had a very busy, emotionally-draining few months and still no flareup– so I’m glad that stress no longer results in inflammation for me. Like you, I have found better ways to cope with the stress and release it.
It’s so wonderful that you have found relief after all the you have been through!! Congratulations on finding a solution that works.
I am overjoyed to hear that you are reaping the incredible benefits of yoga!!! It has done wonders for my physical and mental health and the changes in your thinking and breathing will help you to maintain remission.
Please keep me posted about how you’re doing.
Thanks again for getting in touch and enjoy the sunshine!
Wishing you peace and good health,
Cameron
Dear Rachel and Cameron,
I am so glad for you getting to remission. I got UC since 2011 and tried different medicines. I am on Salofalk, Budenfalk to finish does in 1 month and Dr put me on 50 mg Imuran as start a week ago plus taking daily Benexol and Folic Acid. I was wondering if its possible to take Psyllium Husk with Imuran treatment? Im on SCD diet plus I exercise areobics. I really appreciate your support and help. God bless
Hi Norah,
Thanks for getting in touch. I am glad that you are using diet changes and exercise to help your UC… It is wonderful that you are using a holistic approach! How is the Imuran treating you? I hope you are finding relief.
Good question about the Psyllium Husk. I have never tried taking it before so I am not sure about combining it with Imuran. From what I have read, I don’t think it would be a problem but I am not an expert. Imuran is an immunosuppressant, so I would talk to a naturopath about combining the Psyllium Husk with it first.
Wishing you peace and good health on your road to remission.
HI THERE can u please call me or connect with me I need some information. My daughter is going through similar experience and I need some help. 6477407645
Dear Pam, to whom you are pointing the question? Thanks
Hi Pam,
I’m so sorry to hear about your daughter. What can I help you with? Not sure if you are directing you message to myself or Norah or Rachel… But please let us know how we can help :-)
Thank you for replying Cameron, I actually was in remission two year since December 2013 and until September 2015 with Salofalk Granules and suppositries at night. I got my relapse since mid Septemeber, I tried Entocort enema with prednisone it didnt work, The doctor made me colonscopy and suggested me to turn to Humira I have used it for two months and be continues with salofalk granules. I couldnt afford Humira any more so suggested to him Imuran, He also gave me 2 months dose for Budenfalk which helped little with Humira, dose will finish 20 January. So the blood tests TMPsupposed to show today that if I am able to double dose for Imuran to 100. We dont have good doctors in my country so my doctor in another close country. For natural therapy I use mint water in morning with honey and started flax seed oil one shot 3 X Tbsp. I am scared to use probiatics or glutamine. I use SCD yogurt in little amount as still blood and mucus in stool. Do you recommend probiatics than yogurt? Im just anixious I hope all will be ok.
Hi Norah,
I’m sorry to hear about your inflammation since September 2015. It sounds like you are trying a lot of different remedies. The only problem is that it can be difficult to test the effectiveness of each medicine when you are trying so many different things at once. I understand the urgent feeling to find a solution though… Just remember that Imuran can take a number of weeks to have an effect, so it may take a while after you increase your dosage before you see any positive results.
Also, I hope you are in close contact with your doctor about your usage of Imuran. Ensure that you are having (at least) monthly blood tests to see how it affects your blood cells. I was lucky enough not to have any major side effects (aside from some hair loss). I hope your lung inflammation subsides eventually. Is the garlic working?
Probiotics have worked very well for me in the past when having a flareup, so I would give them a try. Sometimes dairy products can make inflammation worse, so try to use probiotics without the yogurt.
I totally understand the anxiety surrounding a bad flareup, so I feel your pain. Don’t forget about the incredible effects of yoga and meditation to calm the mind… Calming our self-defeating thoughts is half the battle ;-)
Sending you lots of positive thoughts and warm wishes for good health!
Hello Cameron,
You are right about the medicine mix, luckily I found a good doctor in my country. When I told him the previous doctor prescribed me humira, budenfalk, imuran he got upset said why he prescribed you strong medicine so I was like lost and told him how would I know that. Cause I couldnt continue with imuran as the TPMT came low i think 9 it says if its above 20 its fine. So I really had to change my doctor abroad. I am following my doctor here now I left all this mix medicine which really didnt help plus the side effects on me. I am on 4 gram Pentasa and I see better changes from Imuran and I use suppository at night. I feel Imuran was making me so weak even effecting my blood as my HB came 11.5 which is minimum level. I am so glad I found good one here cause when ur doctor is abroad the communication is difficult and I cant keep travelling as it costs. Yes the garlic is so good as for cold and lung it causes some gases, but it kills all bacterias even in food I use it all time japanese and chinese are famous in using the and I try to be vegetarian most times and focus on kale and spinach as proteins until I get healed. I eat meat, chicken very rare, I will try to buy probiatics you told cause I have read that it can heal leaky gut as well and still do exercises especially abdomn exercise to heal constipation and stress out . For the diet which kinds of flours are you using to do snacks or bread? Are these gluten, lactose, milk free biscuits are ok? Thanks a lot for your support and answers its really appreciated. I hope I can find and start a job soon cause I didnt work since October.
For effects of Imuran when I took it 3 weeks ago I got side effect with lung inflammation, my only antibiotcs was Garlic. It is the best natural medicine for lung inflammation. Of course with hot water, ginger, camamolie. I see 15% of Imuran until now, I dont know yet how it will be after increasing dose or quitting Budenfalk. I am having 2 BM everyday with these syptoms I mentioned it earlier I hope all will be fine.