Maintenance Medication Needed?

Lauren taking Lialda for maintenance medication.

Originally from Philadelphia. Avid runner and spin classer. Played water polo in college. Maiden name rhymes with my married name.

No active UC/Symptoms (!!!!)

Hi, my name is Lauren and I was diagnosed with UC in 2013 while I was between jobs and went off birth control (great timing). My UC seems to flare based on hormonal changes, as I experienced significant flames following the birth of my two children. The flare after my first child prevented me from leaving the house for several weeks. My UC was under control to the point of going off medication within 6 months of having each child.

I get preventative colonoscopies every 3 years. I haven’t had a flare (or even symptoms) since early 2018. I had a recent colonoscopy and my doctor confirmed that my UC is not active. Yet she still recommends that I take my UC maintenance medication (Lialda). Lialda works for me but makes my stomach feel bloated, crampy and makes me feel gassy (like I have active UC). I’ve tried other medicines and had worse side effects. I don’t understand why maintenance medicine is needed if I haven’t had a flare or symptoms in awhile. She said it’s to prevent the severity of future flares. I’m interested to hear from others about this topic. I ultimately am having trouble understanding why I need to take medicine my whole life for a problem that seems to be in the past. My mom had colitis when she was younger (and having kids) and doesn’t have active UC and doesn’t take medicine.

This site was a lifesaver for me when I was diagnosed in 2013. I changed my diet and lifestyle (less drinking) based on some comments. I adopted some of the recipes posted. And I read all your stories and it comforted me/made me feel part of a community (since talking to people about this not so pretty disease can be hard).


Best, Lauren V

Lialda (worked)
Many others (suppositories and others) that didn’t

written by Lauren V

submitted in the colitis venting area





lialda

50 Responses to Maintenance Medication Needed?

  1. JamesD
    James November 4, 2019 at 11:44 am #

    Lauren, like you I have not had any symptoms for almost 2 years and my most recent colonoscopy results were such that my MD said “If I didn’t know you have UC I would say you don’t have UC.
    But still wants me on Lialda
    I did find that when I stop taking lialda, within about 2 weeks I start having mild symptoms so I always go back on it.

    It’s so expensive however even with insurance.

    • Laura November 9, 2019 at 11:17 am #

      Did you know there’s a generic for it now? With insurance, mine is $25 for 90 days. No problems whatsoever. Been in remission nearly 2 years now, 3 years since diagnosis.

    • Lina Newstead November 11, 2019 at 8:18 am #

      I have UC & when I am not on a flare I do not taek medicaiotn As I am in UK this is in consultaiotn with my concultant When I do have a flare adn I have had one a year fro abotu 5 years I use steroids & it takes about 6 weeks to get it under control I do not have colonoscopies becasue the last one set off a flare! I used to take a mezalasine product all the time but it did not reduce flares You need to consult with your doctor all the time

      However I do stay on a Lofodmap diet adn i take suppliments like pro-biotics VSL# and others adn I do not drink alchohol I do lots of Yoga and breathign and deep relaxations hypnotherapy to stay calm Meditate mindfulness etc

      • Bob November 12, 2019 at 3:43 pm #

        VSL# is the worst thing on this planet! It has caused me (and many other people with UC) severe flares. It is loaded with all sorts of problematic things. My advice is to avoid VSL# like the plague. Somehow the VSL# people got a patent and then paid to get a study done. That’s all it takes to get onto doctor’s radar. In my opinion, VSL# has been “prescribed” or recommended by doctors without them truly knowing the implications.

  2. Lois November 4, 2019 at 12:03 pm #

    I have been taking lialda for several years and still get at least two flares every year. When I first started taking it the doctor tried reducing the amount, but when it was below a certain level I immediately went into a flare. It is my understanding that I will be on this for the rest of my life, or until it stops working and I have to switch to something else. There is a difference between colitis and ulcerative colitis – colitis is short term like having the flu and ulcerative colitis is chronic. I would recommend doing lots more research before you consider stopping.

    • Diane November 8, 2019 at 7:17 am #

      Hi Lauren – I was diagnosed almost 10 yrs ago when I was 40. Antibiotics brought it out with me. My mom also had U.C when younger but then was in remission for nearly the rest of her life until the last couple of years. She was on maintenance sulfazilsine (sp) most of her adult life for the reason you said and ended up with some other health issues including kidney disease as a result. She passed last year unexpectedly at 78 after a flare started and her gastro put her on entyvio and she ended up with c-diff and pneumonia. These medications are no joke. Flash over to me and I went on Lialda when I was diagnosed. I never felt like it quite managed it, then my gastro had me on Lialda and Azathioprine. Not too long after I got a basal cell carcinoma skin cancer and had to have that removed. Now I am susceptible to more even though I am no longer on the MED. I have had another skin cancer since then too. Again, the meds are no joke. So after I went off Aza – but my gastro made me continue on the lialda all throughout – I changed Gastros. Mine wanted me on maintenance just like you no matter what was going on. Switched to my new gastro who is incredible but things kept escalating and I ended up on Humira but my gastro stopped the lialda because she doesn’t see the point as it clearly wasn’t working and otherwise why be on meds if you don’t have any symptoms? Her way of treating was refreshing and not the cookie cutter conservative way. However, I went from a mild case to severe very quickly somehow. After only 6 months on the humira I got bilateral pneumonia and pertussis and was hospitalized for 7 days, very serious. Keep in mind that I work out, eat healthy, and besides the colitis, very seldom get sick. They threw every intravenous antibiotic at me in the hospital because the pneumonia wasn’t getting better and lo and behold. When I finally did get better – no evidence of colitis. For 3 years, no meds. Then circling back, my mom gets hospitalized unexpectedly because of the small pneumonia and c-diff. I don’t really take the proper precautions while she is in the hospital – well because it’s my mom and I am not going to wear a gown, gloves and a cap when my mom is unexpectedly on her death bed. 6 months after my mom passes all of a sudden I have c-diff and supposedly a severe flare again. Had to take the antibiotics for the c-diff and had my colonoscopy. Severe colitis again and was admitted to the hospital for 3 days. I get out, c-diff is gone (for now) tapered prednisone and then I start xeljanz. Hated what I was reading about xeljanz but liked that it’s a pill and you can stop and start if needed unlike some of the other biologic (best of the worst? Jury is still out). 100% turnaround in a week. So was it the xeljanz or was it the c-diff being gone? Was it always the c-diff? I took 10 mg of xeljanz for another month but didn’t want to because my symptoms were gone. I slowly weaned myself off over 3 months with the support of my incredible gastro who actually listens to me. I just had my colonoscopy and no evidence again and no meds – just strong probiotic. So long story short – talk to other gastros – if you don’t feel right taking meds with no symptoms – talk to another doctor. They don’t all subscribe to the same rules. I feel like I know my body more and how I do with this disease more than they do. Read a lot….it helps. I still am wondering if my colitis has ever even been colitis because there always seems to be some other infection involved…good luck and trust your own intuition – you got this!

  3. Deidre Dixon November 4, 2019 at 12:06 pm #

    Lauren,

    Like you, I’m just a fellow UC-er who is currently in remission. When my UC flared up a couple of years ago, I managed to get it into remission with Lialda (4.2 gm/day) and strict adherence to the specific carbohydrate diet. I later persuaded my doctor to reduce my Lialda by half. However, I have continued to take the lower dose of Lialda in hopes of avoiding another flare. I also take the probiotic VSL-3, which really seems to help build up the good bacteria, and take Ceylon cinnamon and manuka honey as often as possible (both are anti-inflammatory).

    My takeaway about this illness is that everyone has his/her own approach. There is no one-size-fits-all way to manage it. In my case, I believe diet is very important, but I also find eliminating all Lialda would worry me unduly. The side-effects for me have been minimal and I want to extend my flare-free time as long as possible.

    Best of luck to you.

    Deidre

  4. Graham from England
    Graham Lee November 4, 2019 at 12:10 pm #

    Hi Lauren,

    Extra Virgin Olive Oil is a great maintenance therapy. There’s a ton of information on this site about it if you use the search tool. It’s anti inflammatory for a start and the general health benefits are huge. I spent a great deal of time researching it as it turned out to be my breakthrough. Directions and buying advice is all there, it doesn’t work for everyone and rarely reduces a flare but it took my remission from 3 weeks to 14 months though much shorter now.

    • Adam
      Adam November 4, 2019 at 12:15 pm #

      Lauren,

      Graham has for sure with a Capital something….busted out some good olive oil (EXTRAAAA) over the years…
      here’s a link for all who want to catch up on this and the hundreds of comments….

      https://www.ihaveuc.com/author/graham2/

    • Lauren November 8, 2019 at 5:19 am #

      Hi Graham,

      Can you share the specific brand you use?

      Thanks,
      Lauren B.

  5. Amie P November 4, 2019 at 12:59 pm #

    Every single time i tried to come off maint. meds i ended up in a flare worst than the previous one. If you are ok with dealing with the consequences then i would give it a try. Every time i get my UC back under control i tell myself i will never come off the maint. meds again but i always get brave when i get good reports from the gastro and i try to stop. It never fails that i end up in a flare. You won’t know unless you try, you know what to expect if you were to have a flare.
    Good luck and i hope you have peace with whatever decision you make. Both are really tough decisions.

  6. Ann November 4, 2019 at 1:17 pm #

    I’ve been very fortunate. No use one Lialda a day and I think I’m about to flare I take 2 a day & watch what I est

  7. Richard Porterfield November 4, 2019 at 3:40 pm #

    For what it is worth, I have been in remission for.almost 8 years on mercaptopirine. If have had some issues that are probably related to the suppressed immune system. 3 bouts of celulitis, and a case of camplobactor food poisoning advancing to sepsis. That was scary, death was a real possibility,but I remember being so sick for so long with the UC that the risks are.worth keeping the UC at bay. I have my.life back, I have traveled the world, hiked the Himalayas, done 500mile bike.weeks, long backpacking trips all with no flares. I plan on staying on the meds for as.long as.I can breath. I belatedly learned to seek medical care at the first sign of an infection. Hours can be critical when your immune system is not all there.

  8. Diane DeCillis November 4, 2019 at 5:11 pm #

    I’ve had ulcerative colitis since 1996. I have experimented when I’m in remission of cutting out my meds. But that does leave me vulnerable to another flair which inevitably comes, even a year or two later. I think it’s best to protect your colon from flares which can be damaging. I take sulfasalazine. I only take a half dose when I’m in remission. When I have a flare I increase it to the full dose

    • Rosanne
      Rosanne Robinson November 5, 2019 at 8:24 pm #

      Thank you for mentioning sulfasalazine!
      I had been on Apriso but it is too expensive on Medicare. I recently switched to sulfasalazine in addition to my prednisone and mercaptopurine. I was hoping that sulfasalazine works well. I have had UC since 1982.

      • DianeDeCillis November 5, 2019 at 9:03 pm #

        My pleasure. I hope it works for you, Rosanne.

  9. Adam
    Adam November 8, 2019 at 3:16 am #

    Thanks Lauren for sharing your story, and for bringing up such a great question regarding medication while symptoms appear to be gone especially after having a confirming colonoscopy.

    And a big thanks to all those who have left comments with individual experiences. Let us know how you decide to move forward and best of luck to you and your family!!

    –Adam

  10. Kate November 8, 2019 at 3:42 am #

    I’m in a similar place, or hoping to be. I have UC and take Humira (well a biosimilar) at double the usual dose. I hate it – the whole thing about keeping it cold all the time and doing injections and having deliveries and being aware of immune suppression (I work in a lab where elsewhere in the lab they have pathogenic bacteria so I have to be careful about that) and so on. But it’s kept the UC under control very well so I can’t complain. Well clearly I can but I shouldn’t!

    Since it’s been so well controlled, I was going to talk to the doctor about reducing my dose. I’d hoped much like Lauren that once it was established under control I can stop or at least reduce to a less severe medication. It’s depressing to hear I might be on it for life. Does anyone ever get medication-free control?

    • Nadine November 8, 2019 at 7:51 am #

      Hello, my daughter was diagnosed with UC when she was six, she’s now 15. She was on 20mg of Humira twice a month plus Lialda daily since 2014, and went into remission shortly after starting the Humira. So now five years later after two colonoscopies that showed her pristine colon, and sometime going three weeks between injections, we decided to stop Humira (as she was on the lowest dose possible) in April of this year. She continued the Lialda however. She was great for 3 months, but seemed like she might be going back into a flare in August around her period. That passed and we thought it was just a fluke, but by September she began flaring. I was where you were- my daughter is healthy (we got sick more than her), her colon show no inflammation, her bloodwork is normal, it’s been 9 years…. but unfortunately, when the her GI doc said it’s going to be lifelong, I believe he was accurate, and I am finally accepting it. For the last few years I have been worried about her being on meds if she was really fine, but after only stopping Humira, flaring has returned and now I’m watching her go through the physical, and, emotional struggles that this disease manifests. I wish you all the best.

  11. Lorena November 8, 2019 at 4:09 am #

    Yeah, I always wondered why they keep us on maintenance drugs if we are on remission. But the thought of having a flare up is so scary that I keep on taking them. I’m also on Lialda and been on remicade for three years now.
    I followed the SCD very strictly for a couple of year and I now have been introducing some carbs….now I’m dealing with silent reflux and seeing an ENT……I really have to go back to it. It helped me tremendously.
    I wished I were only on Lialda, but unfortunately my UC got really out of control and nothing was working except Remicade.

    • Teddy November 8, 2019 at 6:17 am #

      I am entering 20 years of UC.
      From the beginning I had prednisone but I hate it cos it destroyed my hormones that stopped my menstrual cycle totally and weakening my bones, depression and so on. Then moved to imuran and asacol.
      Unfortunately, Imuran just worked well for a few months. Then moved to Tacrolimus/ asacol. Works pretty good for almost 6 years.
      I changed Asacol to Liliada during recent flares.
      The latest flares of today’s result that I’ll be leaving Tacrolimus because I have been taking it for 6 years now. Doc says that taking too long may cause liver complications.
      I’ll be soon taking Mericade with a combination with Liliada. Wish me luck.

  12. Kelley Callaway November 8, 2019 at 4:28 am #

    That’s a tough one because it’s a risk. And it appears to depend on the person and their UC. So many people are able to stay in remission with diet! I’m not one of those people, sadly. I was on Lialda my first year. I thought I was in remission but didn’t realize I wasn’t and I hate taking medication. I ended up in the hospital on 3 different steroids that weren’t working and now i’m on Remicade. I don’t love it but I’m scared to try getting off of it because I live a very full life. Some exhaustion but I give myself B12 shots and that helps a little. Good luck with whatever you decide!

  13. Kim Wyatt November 8, 2019 at 4:31 am #

    Hi Lauren,
    I was diagnosed with UC at 32, I had earlier flares but not during/after pregnancy.
    I did however flare every single time I got my period. Thankfully I was able to suppress my cycle with birth control pills.

    I am in the best Remission for my pan (whole large intestine) ulcerative colitis that I’ve ever had. And I think I’m actually starting to flare. I take 2 Lialda pills a day and 5mg Xeljanz twice a day. For me, Xeljanz I can’t even tell if it gives me side effects. And 3 tables of methotrexate a week. I notice my rosacea gets bad the day before I take methotrexate and better the next day. It also makes me nauseous and feel slightly icky for a couple days.

    But, Lialda, since I’m jn remission my gastro Doc & I decided to try tapering off from my original 4 tablets a day. It does make me bloated like you. And heartburn Everytime I try to go below 2 tablets a day I start to flare. Before I added Xeljanz I couldn’t even taper down to 3 tablets a day.

    I did get a tip from a pharmacist with UC. Take the Lialda after your biggest meal. I tried this and it reduced the heartburn significantly. Still got the bloat though.

    • Garry I November 8, 2019 at 5:46 am #

      I am about to transition from Entyvio to Xelganz, seemingly the last in the line of trying just about every med discussed on this site before having to consider surgery. I am fairly adamant about not going under the knife. I just received a severe UC scope diagnosis, processing over the last 5 years. I do believe I need to get more strict with following SCD. Sugar, lactose and gluten are definitely complicator

      I know Xelganx is new for UC and have not seen any other posts on this other than Kim’s just now. My Pfizer support person says anecdotal evidence of effectiveness is 50 percent and the side effects seem long. Would love to hear what others have experienced with this product.

      Fingers crossed.

      • Anne November 8, 2019 at 6:40 am #

        Hi Gary,
        I’ve been on Xeljanz for about 10 months & it’s working very well for me. Nothing else has worked for me as good as this. I started on 5 mg x2/day but had to move up to 10 mg x2/day. I’m actually living a normal life again.

      • Bob November 8, 2019 at 12:48 pm #

        Hi Garry,

        Do more than just cross your fingers. Get proactive. I encourage you to be strict with SCD. Anything other than the strictest adherence to the diet and you are basically NOT on SCD and you are feeding the bad gut bugs. I suggest people go back to the intro diet for 3 days and then introduce one food at a time. That allows your body to reset and gives you the best chance for success. Follow the stages on the Pecanbread web site. It helped me in the early days of SCD.

        Have you tried LDN? It has been a miracle drug for me and my UC. My GI doc wouldn’t prescribe it, but my GP did after she did some of her own additional research on it. It’s a pretty benign drug with minimal side effects. Do your own research and see if it might be a fit for you. I’ve been taking it for 1.5 years with no UC symptoms.

        -Bob
        UC 12 years
        SCD 11 years
        LDN 1.5 years

        • Garry November 11, 2019 at 7:39 pm #

          Thanks Bob and I wrestle with doing what seems sensible with SDC and occasionally enjoying food that I crave. I also have not followed LDN and will discuss with my GI doc, though suspect she will have concerns as there seems to be few medical studies on this product, but I need to discuss everything now.

          Thanks for the helpful poke and advice.

    • Bob November 8, 2019 at 12:53 pm #

      Hi Kim,

      I get heartburn when I don’t eat enough veggies. There is a direct correlation between my vegetable consumption and my heartburn symptoms. I’ve found that eating raw broccoli & cauliflower almost instantly make my heartburn go away, but the steamed versions also work well. One of the best things for my heartburn is raw fennel. It works like a charm. In fact, fennel oil is a great cure for infant colic.

      -Bob
      UC 12 years
      SCD 11 years

  14. Mary S
    Mary Smith November 8, 2019 at 4:35 am #

    I went without meds one time and within 4 months was flaring again (worse than the first time) so now I know better than to stop my maintenance med, Asacol HD. Mesalamine DR is the generic. But the real problem is you can be symptom free (clinical remission) but still have damaging inflammation going on in your colon and not know. Once your colonoscopy shows remission (endoscopic remission) maintenance meds are one of the tools doctors use to help keep you in remission. Is it a guarantee? no but why eliminate something that can help. No one stops their thyroid meds or RA meds. If you have a forever autoimmune disease you have forever treatment. Use all the tools in your arsenal, including diet and supplements. Find a drug that has the fewest side effects for you. Stay strong my fellow UC warriors!
    .

    • J November 8, 2019 at 12:59 pm #

      This is silly, but I feel like Brazil nuts helped my heartburn. I found it out when I was researching other health stuff… if I feel it coming back I eat a nut! You have to be careful about not eating too many at a time because they are high in selenium, and one is enough for daily value.

  15. Simon P
    Simjn November 8, 2019 at 4:46 am #

    Hi Guys,
    I similarly have been in remission for a couple of years and my last colonoscopy show no active ulcerations. I take Mezzelavant and am reluctant to stop because of the risk of flare.
    I have managed bloating and gas by cutting out Gluten. This certainly helps and maybe I need to do some more research into alternative therapies but the fear of flare always stops me.
    Maybe it’s the severity of the medication side effects that determine whether you try alternatives.
    Good luck all with whatever you try.

  16. Karol November 8, 2019 at 4:58 am #

    After you get into remission get some helminths, you’ll be set for a while (or until the GI takes them out of you during a scope [bastard])!!

  17. Robin S
    Robin Saul November 8, 2019 at 5:08 am #

    I agree with Deidre about everyone being so different with medication and control of flare-ups. I was on Lialda and Remicade together for years and in deep remission for 7 years. Diagnosed 2000 at age 40. In 2017 I totally changed my lifestyle and food to a vegan diet, gluten-free, oil-free, sugar-free, salt free. Most of my cravings for processed foods disappeared. I was able to stop my Lialda (against my doctors advice) , wean off my anti-depressants(after 17 years). I lost 40# and after being on this food plan for 1.5 years I took the deep dive and stopped my Remicade. I would NOT suggest this for the majority of people and I do not take stopping such strong medication lightly. I prepared my body and am hopeful I will not need to be back on a biologic. It has been 5 months without any meds and my only problem is joint pain, sometimes severe. I have a colonoscopy scheduled and I changed GI docs to someone more supportive. I also have a plan in place if I start having even the smallest of GI symptoms. I do not believe that people need to be on these types of drugs for life. It is not like a type-1 diabetic who doesn’t produce insulin – they need meds for life. Many of our diseases are about chronic inflammation in our body and if we can reduce the inflammation through diet and lifestyle changes we can possibly reduce our medications. I do not know anyone else who has successfully gone off biologics. For me and my personal philosophy, I wanted to take the chance. I am not against all medication and if I needed in the future I would take if necessary.

    • Kelley Callaway November 8, 2019 at 5:23 am #

      Robin, please keep us posted (or just me) on your life after remicade. It is my ultimate goal to go off of it as well. Maybe. I go back and forth in a weekly basis.

  18. Lauren November 8, 2019 at 5:31 am #

    Hi Lauren

    I had quite moderate to severe Colitis for a few years and was hospitalized a few times. I have been in medication-free remission for two years now. I don’t encourage anyone to do this without medical advice obviously.

    Many people do in fact go on to have long term remission without drugs. If there is a chance that this could be you, is it worth taking? I don’t have the answers.

    The things that have helped me support my body in healing:

    Yoga
    Changing careers to something I believe in
    Getting more sleep
    Healing an old emotional wound
    Meditation
    Eating more mindfully
    Supplementation only when needed
    Self love and belief

    Most of the changes I have made have been lifestyle. Epigenetic studies are starting to prove that gene activation is predominantly determined by lifestyle.

    Of course there have been dietary changes but healing autoimmunity lies much much deeper than that and it is a rewarding journey.

    Good luck everyone. Much love

    • Anne November 8, 2019 at 6:45 am #

      That’s amazing & a lot of hard work.

  19. Beth Goldenberg November 8, 2019 at 6:03 am #

    I have had UC since 1970. With each flare you run the risk of permanent damage to your colon. I on Lialda and Entyvio infusions every 8 weeks and just discussed with my doctor stopping Lialda since I was on the Entyvio. He said clearly not a good idea cause I need both to prevent any flares. I can only say that with each flare is becomes longer and risk of permanent damage to the colon can occur. I now have a non-functioning descending colon from “scar tissue’” is the best way to explain it. Am home bound all mornings to go through regimen to get the bowel to empty so I can leave the house for an hour or two and require being home after meals or next to a bathroom. No surgery option available for me. So I would say prevention of future flares is absolutely worth it if the doctor feels you’re at risk. Menopause and it’s hormone changes can absolutely throw you into another flare. I used to have mini flares when ovulating so I know the hormones do affect UC. You don’t want to become permanently disabled like me. It’s sucks.

  20. Susan Miles November 8, 2019 at 6:51 am #

    I am 51 years old and was diagnosed when I was 30, have flares maybe once a year, have been hospitalised twice and both times with steroids intravenously has brought it under control other than that short courses of prednisolone/colifoam has stopped the flare! I absolutely hate tablets, especially steroids and will do everything not to have them so I do not take medicine in between time which is asacol as would rather deal with my colitis and stress through diet, less drinking and exercise as believe this is what helps me maintain a non flare period. i know my body now and can feel when a flare maybe coming so try to do yoga, run, anything that relieves the symptoms as don’t believe that when I am healthy I should pump my body full of meds. This is obviously each individuals choice as some people cannot come off meds for the risk of a flare! But this works for me and after 20 years would rather look to self help first before taking tabs for the rest of my life xx

  21. Wendy
    Wendy Hammond November 8, 2019 at 8:23 am #

    I wouldn’t take the maintenance medications and I no linger have a colon. I am happy about my decision though. I had flares while on the maintenance medications so I totally stopped. I understand why the doctors want people to take these meds but they also have side affects and some are serious. The only way to cure this disease is to get rid of the colon. Even then it can come back, but I feel it is a better chance for my body at having a better quality life.

  22. Cathy Miller November 8, 2019 at 8:26 am #

    My heart is torn reading all of your letters – I find all of this so terribly sad (for me personally). I was where many of you are now. I can not believe how many people now suffer from this condition. Myself I had the last rights and was literally bleeding to death. I am so well now, no meds. no aches, no pains, great b.ms., great appetite and actually feeling better than when I was 20. now I’m 70. So much to say to hopefully help anyone who cares to try other means. I give out a book I wrote which I keep bound copies of at my home. I simply tell my friends if they have friends who are going thru this I have a book about how I made it through. All I intend is to pay this forward best i can as I got so much support from strangers. I need to go back to the Library because my friends have friends and out of the 20 I made I have only one left. It is on this site too. It’s called”Stop The Bleeding”. I think it is under Cathy’s free Ebook.
    There are no easy answers or simple solutions. I went to my M.D. the other day for my annual appointment and I told him how well I am and please don’t suggest I take a pill. He did suggest I take something from his bag of goodies and I insisted – not for me personally ok? He told me that 1 out of 5 people who have had colitis get colon cancer so I should take the drug. I used a trick I learned from Mark, “I Beat Cancer” guy ( I adore this guy). He said to ask the doctor; “how do they know that statistic if people like me don’t take the drug – how would they know about me. He said well they wouldn’t”, they can only track the patients who take the pharmaceuticals. “So 1-5 people who take the drugs gets colon cancer.” He had to agree. He said, I guess you could say that. I have a lot to say in a negative fashion about drugs except my herb which is a gift for me….so I will say nothing. I just hope anyone who reads this finds there way. It can be way more deadly and all consuming than cancer. No one really has a clue in the medical world is my feeling. sorry.

  23. J November 8, 2019 at 10:20 am #

    For some reason, Lialda never worked for me. (It would basically just go straight thru!!) I have been taking Apriso, and wish I did not because I don’t like taking medication that contains aspartame and I have heard about risks to kidneys and liver. So far, so good, though I have had some other mysterious health issues that are probably not related recently. I think another autoimmune disease. I’ve also been in remission, as my recent colonoscopy, but when I stop taking my medication, after a few days, I get a sandpapery feeling when I use the restroom that is painful. I also feel that eating gluten-free has been a big thing for me personally too, though I would be careful, as you are cutting out a lot of nutrients. I do hate taking medication, but I think at this point I have to. I do try to cut back on my dosage, which is one reason I like Apriso- I can actually take a lot less of the mesalamine. I typically take 3 pills one day, then 4 the next and so on. I’ve cut down more but had issues seem to come back. The nurse at the doctor’s office one day lectured me about how I’m not taking it properly, which made me mad because it’s not like she has to deal with the side effects and long term consequences of taking this medication… I do, and I’ve been successful with what I’m doing. I’m guessing the medications work based on where you have the most issues, but it has been good for me.

    I always feel like I’ve been very tired since being on mesalamine in general, but now I’ve slowly worked back up to working out and also I find that for me I have to be very careful with avoiding gluten.. though I do have a wheat allergy. So, I have been feeling more back to my usual self lately. :)

  24. Allie K. November 8, 2019 at 10:38 am #

    The one thing that causes my UC to flare are NSAIDs. Sometimes, I just have to have a Motrin or a packet of Cambia for a headache. That’s when I immediately start noticing that my UC is flaring up. I would like to know what other options I have for anti inflammation after surgery, or in general. I wish I could take NSAIDs. But, with regard to your dilemma, stay on at least one Lialda a day! I have irregular stool, which varies from diarrhea to constipation, and even one Lialda a day isn’t enough for me for maintenance, even though I don’t have any you see symptoms. I also use Humira every two weeks.

  25. Marilyn November 8, 2019 at 10:57 am #

    I have proctitis that has spread a little. I do mesalamine retention enemas every other night and take turmeric, probiotics and drink a lot of kombucha and kefir water, I also gave up a coffee. With my insurance a 28 day supply is $25, but less since I only do it every other night. I have a few symptoms but for the most part I’m in remission, I just avoid gluten, dairy and spicy food.

  26. Bob November 8, 2019 at 12:29 pm #

    I’ve tried to wean myself off of prescription meds at least a half dozen times. The result was always the same – flares. I’ve had periods of two and three years symptom-free. But I’ve learned that does not mean that I’ve been “cured” of my UC. I take Mezavant which is the Canadian version of Lialda. It’s worked well for me. I expect to take it for the rest of my life.

    In my opinion, the more your body flares, the more it normalizes to the flared state which is NOT what you want. The longer a flare lasts the harder it is to make it go away. My flares are much less frequent now (years in between), but when I get them they have been getting more and more severe. My philosophy has been to prevent flares in the first place whenever possible.

    My daily UC interventions include the following:

    Prescription drugs:
    – Mezavant
    – LDN

    Dietary:
    – Eat strict SCD
    – Drink chlorine-free water (I let tap water sit 24 hours)
    – Probiotic pills
    – Daily fish oil, multi vitamin, B complex
    – Digestive enzymes

    Physical:
    – Yoga
    – Run/walk

    Bob
    UC 12 years
    SCD 11 years

  27. Rattler November 8, 2019 at 2:22 pm #

    You might consider cutting back on the maintenance gradually. I’ve been doing that with mercaptopurine with no problems arising.

  28. Ali November 9, 2019 at 2:33 am #

    Hi Lauren, just a month ago I stopped all meds and feel better for it, even started running! Diagnosed with UC in 2010, prednisone brought down the flare but I got sick again when I tapered off. So I tried gluten free and came off prednisone on the third attempt with no flare. I was also prescribed Mesalazine to „extend the time between flares“ but even though my digestion was better than ever I still attribute improvement to my Gluten Free diet. Despite being advised that diet makes no difference, my experience is that I only have a flare when I ingest gluten. I discussed stopping the Mesalazine but was advised to keep it. Then this past year I got suddenly ill like food poisoning but it’s was a bacterial infection. so had intravenous antibiotic Rocephin and got a terrible headache and backache while on it. A few months later I had Rocephin as a prep for ERCP exam and had an anaphylactic reaction to it. I was also prescribed Ursofalk for suspected PSC. Plus Pantoprazole for gastritis. Other symptoms like joint pain still persisted, so I was offered Sulfasalazine instead of Mesalazine. One week later I had flu-like symptoms for 2 days, then a red itchy rash spread all over my body and was hospitalised. I stopped all meds and got prednisone and antihistamines for what appears to be a severe allergic reaction to sulfasalazine! My advice is to only take meds short term if necessary. Long term, look for the root cause e.g. diet, instead of treating symptoms and getting unwanted and dangerous side effects.

  29. Em November 9, 2019 at 2:52 am #

    Ime English and cannot believe how much you are held to ransom by pharmaceutical companies

    You should fight for a NHS

  30. LAURA November 9, 2019 at 11:33 am #

    On Lialda for 3 years now, in remission for 2. I absolutely refused to take the biologics, esp. after reading about the risks. I still don’t eat beef, and stay away from certain foods, no other UC meds, just turmeric caps, OTC. I took prednisone, along with Uceris and Canasa the first year, it really jacked with my kidneys and bp. Steroids are such a double-edged sword. Not wanting to continue maintenance meds bc you’re feeling good is why you SHOULD stay on them. Kinda of like people that take meds for anxiety or depression that are feeling better, so they stop their meds. And then the cycle begins again. The goal is to reduce any kind of inflammation, that’s what causes so much damage in the long run, and not have an on/off cycle of remission/reoccurrence.

  31. Lori November 16, 2019 at 5:26 am #

    I have had UC for over 40 years. I got it at 18 and I was pretty sick. I was on a lot of different meds but I refused to take a biologic. Too may side effects since my UC was not that active. I found out about LDN. My dr refused to give it to me, no money in it for him. I went to an online dr who I see every 6 months FaceTime. I’ve never felt better. Not covered by insurance but it only costs $50 every 3 months. I take 4.5 mg, with no side effects. I also take a probiotic, turmeric, and vitamin D which helps the absorption of LDN. I wish more people would hear about this medication and I wish more drs would prescribe it. I’ve never felt better.

  32. George M. November 16, 2019 at 7:30 am #

    I was diagnosed in 2011. Had 4 flares during that time, the last being the worst, lasted 6 plus weeks. I have only taken Lialda. I take Prednisone during flare ups. My doctor wants me to try stelara or entyvio, but he is leaving that decision up to me. I’m going to hold off on doing that and continue to focus on my diet and stress. FODMAP is helping me understand foods better. Limiting alcohol use. May stop completely. I have a medical marijuana card now, going to put that to good use.
    I agree with one other comment, everyone is different. I will say, don’t self diagnose yourself. Having a GI doc you trust is important.

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