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Is Mesalamine a Done Deal for Me?

me with my daughter

me with my daughter

Introduction:

Hi! My name is Kimberly and I was diagnosed in 2001. I have a great husband and wonderful daughter, 20 months old, along with a doberman and miniature pinscher.

Some more about me:

I am a military brat all around, my dad was air force and my husband is marine. We are stationed in beautiful Kailua Hawaii and I have lived in many places.

I love running and cooking and just doing things with my family particularly my baby girl.

Symptoms:

I am having pain with some softer stools and sometimes go 4-5 times a day sometime within one hour. Right now symptoms are mild compared to other flare ups

Is Mesalamine a Done Deal for Me?

This is my third time writing, I have been through some rough patches with UC the past 2 years, but things have been better the last year.  (My previous stories are: Does Your Hail Fall Out After Remicade and Imuran? and I Went From Mild UC to Severe UC)

I had been on Asacol for several years when suddenly I had a horrible flare that was on and off for a year. I ended up coming off Asacol and switching to Remicade in sept 2012. At first, I made it the whole 8 weeks of being on Remicade with no issues, but about 6 months ago after 2 weeks or so of my infusions I would start having minor issues. By week 4 I was having to take canasa suppositories every day until my next infusion or I would be in trouble the next day. I had a colonoscopy in June, which showed some inflammation in the lower colon/rectum..even after a year on Remicade. So this is now my third infusion where after 4 weeks I am taking canasa until my next infusion. So last time they asked me to come every 6 weeks instead of 8, but I can’t even seem to make it 6 weeks!

So, this morning I called my doc and am waiting for his call and am seriously thinking of telling him I no longer want to be on this drug. I never wanted to be on remicade but I am scared I will get seriously ill again if I don’t take it. I want to either try mesalamine again or try diet and supplements. Because I’m sure his suggestion will be a higher dose of remicade every 4 weeks or another drug like humira but I so do not want to do that!

In all of this I am trying to have baby 2. So it’s scary that I am having issues now and at the same time trying to have a baby. Which by the way it was suggested by the docs to stay on Remicade through the pregnancy.

I have read so much good stuff about diets and supplements to try on this site, I am just scared to be off the medications to be honest, because without medications I will be scared to even eat anything at all. I don’t know what to do. Has anyone ever gone off Mesalamine awhile and then went back on with success? I mean they took me off it because when my flare was so bad it didn’t seem to be doing anything, but right now I find the Canasa works well. But I am worried it may not work anymore if I take the pill form and stop everything else.

Medications:

Asacol for many years, with on and off flares
Canasa to back up Asacol and still take on and off now
During flares Prednisone (worked at first but stopped working), Endocort (didn’t work)
Imuran 50mg and Remicade plus occassional Canasa now. Tried to get off that one Imuran tablet but had symptoms so went back on. But it appears Remicade is no longer as effective.

written by Kimberly

submitted in the colitis venting area





34 Responses to “Is Mesalamine a Done Deal for Me?”

  1. AdamSeptember 6, 2013 at 5:03 am #

    Hi Kimberly,

    Give a look at the rest of the “pregnancy with UC” stories. I just went back through there and saw a couple that might be of interest to you both talking about Mesalamine based medications and pregnancy and some others on alternative treatments. There’s some really nice comments from some fellow UC’ers which might provide some insight as well.

    As for diet, I can tell you first hand that I was scared initially when I started treating my UC with diet 4 plus years ago. I must add that at the time I was also on Prednisone, so I WAS NOT medication free when I started. But several weeks later I was. And yes, I was still scared to not be taking any pills at all, but soon got over that. Everyone’s experiences are unique, but I think most would agree that whenever you change your therapy, it can be a tuff time mentally.

    Best of luck with Baby #2 and with living the island lifestyle:)

    -Adam

  2. TerriSeptember 6, 2013 at 5:13 am #

    My son is doing very well taking Lialda (mesalmine) and eating the specific carbohydrate diet. He has been unable to go completely off of meds but is doing really well. Goes once-twice a day – mostly formed, sometimes loose, no blood, no cramping. Try diet while taking meds and you will see fantastic results. I’ve also heard of ladies going into remission while pregnant.

  3. AndySeptember 6, 2013 at 8:25 am #

    Try fecal transplants. Balance your gut then try diet and stay on the meds.

  4. bevSeptember 6, 2013 at 2:01 pm #

    I sure hear what you’re saying…I was so scared to get off the meds. I was on 12 asacol per day…and it was doing nothing but making me sick. My doctor told me it was the UC, not the drug that was making me so nauseated, have loose bms, and making me bleed a lot. I just had a gut feeling it was the high dose of asacol (mesalamine) that was causing me to feel so rotten and I wanted off of it. I started a good probiotic, along with L-glutamine, and within DAYS, I was feeling better. I began dropping one asacol pill per day, and then after a week, just stopped it cold turkey. I wish I’d done it sooner!! It was the thing that was making me so ill!!The nausea disappeared, the loose bms firmed right up, (and the bleeding stopped, I think thanks to the L-glutamine healing the mucosa of my colon).

    18 months now I’ve been in remission with NO MEDS. I never would have thought this possible. Like you, I was ‘scared’ to go off of the meds. I’d heard horror stories of people getting really sick…but it never happened to me! I’ve had UC (now pancolitis) for almost 17 years and I’ve never felt better.
    Cheers,
    Bev

  5. KimberlyHI
    KimberlySeptember 6, 2013 at 3:25 pm #

    Hey guys!

    Adam, Thanks for your comments and for creating this site, I have learned Soooo much reading things on this site. I had no clue about SCD or supplements or any of that before I came to this site! I did try SCD for a couple months while on remicade, I didn’t miss gluten or sugar as much as I thought I would. I had daily stomach aches…I don’t think I could handle the nuts for sure, and maybe the amount of veggies I was eating? So I backed off. I am still making the yogurt though which is awesome. Now that I am flaring again, I am trying it a little bit again without the nuts…because in previous flares I had tried breads/potatos/soups and got worse, I figure what the heck I’ll try a new strategy.
    Terri-yes I want to try diet change..I think taking the Lialda/asacol alone yet trying to eat what I want was causing me trouble. I am going for a different strategy now of watching what I eat. Also, when pregnant, I was in remission the whole time! No issues whatsoever! Hope that happens again next time!
    Andy, my doctor called the day after my post, I was telling him I really want to avoid these immunosuppresants from now on and one thing he mentioned was fecal transplants so I may be going that route soon. He says he has 3 patients trying it and it’s working.
    Bev, the day I posted my story, I went out and got the critical care probiotic and started it the next day. I can’t find a good L Glutamine on the island so I ordered on amazon and starting that next week. I had a rough couple days but the next day I started the probiotic along with Lialda, so now these past 2 days have been much better so far, although I have had no bowel movements so not sure…

    I did hear from the doctor and he has agreed trying Lialda and getting off remicade..although he doesn’t want me to make a dramatic change right away since I have had issues, he wants me to take both drugs for a little bit and get off if things go ok, meanwhile he also is running a test to see if I am building antibodies to remicade. I get my next infusion (maybe last??) next week. So I started Lialda, the probiotic, vitamin D and diet change going towards SCD yesterday. Wish me luck. I’m sooo hungry! I never thought I’d say this but I wish I would just have a BM already so I know how things are going, it’s been like 36 hours or something.

    • bevSeptember 6, 2013 at 9:57 pm #

      Sometimes Kimberly, when you first take probiotics, you can miss a bm or two. That happened to me at first too. I think our colons don’t know what to make of that good bacteria that has been lacking for so long! They gotta figure it out!

      Hopefully, you’ll be pleasantly surprised when you do ‘go’. I was!!

      Cheers

      • KimberlyHI
        KimberlySeptember 7, 2013 at 12:25 am #

        Oh Bev I am so glad to hear that from you, that is comforting. It’s been 2 days, I don’t feel bad or anything, just wondering what’s going on in there I guess!

        • bevSeptember 7, 2013 at 7:46 am #

          Mo worries! I never get ‘constipated’…never have in my whole life. Probiotics must really work because when I first started them, I went from being ultra loose, to not going at all for a day or two, then right to pretty firm. (Sorry for all the info…lol). I hadn’t been that firm in so long (like years), that it almost ‘hurt” to gl like that…but hurt in a good way!!

          Everyone is different (I hate saying that over and over but it is true) , therefore probiotics will affect everyone differently. Let me know that things get straightened out, just so that I/we can tell other UCers what might occur when starting them, okay?

          Bev

          :)

          • KimberlyHI
            KimberlySeptember 8, 2013 at 9:13 am #

            For sure I will update what is going on. As for today, I still have not had a BM, going on day 4! But I feel fine! Weird.

          • bevSeptember 8, 2013 at 9:55 am #

            Four? Well, as long as you feel okay…are you eating normal amounts too?

          • KimberlyHI
            KimberlySeptember 9, 2013 at 9:59 am #

            Am back to normal, I think. Yesterday I finally had a BM in the morning, it was a little rough because I was in and out of the bathroom for an hour with 5 BM’s with a little discomfort, which freaked me out a little. Then, I was fine the rest of the day. This morning, normal BM just one so far with no pain. I wonder if I ate something the night before, or maybe not going for 3 days messed me up yesterday…anyway feeling better so far today. :)

          • bevSeptember 9, 2013 at 10:50 am #

            Kimberly…I think that’s really okay! Your colon is simply adjusting to the new good bacteria. Things should continue to straighten themselves out.

            Yippee!!

            I am so happy for you, my friend.

            Be well!!

            :)

      • KimberlyHI
        KimberlySeptember 24, 2013 at 8:44 pm #

        Hey Bev…i know you take 2 scoops of l glutamine if I remember right, do you know how many grams it is? The powder I bought is 2 grams per teaspoon. I am doing ok but like today had a major urgent bm with a little blood…no pain though. Even with remicade, liadla, 50 bil probiotics, imuran!! All that stuff and still not totally normal! Anyway I have been doing the glutamine for 2 days but only 2 grams. Thanks Bev!!

        • bevSeptember 24, 2013 at 9:57 pm #

          Two scoops is 10 grams, because there are 5 grams of L-glutamine per scoop. I am taking two scoops at the moment, but 8 scoops is the max dose…which would be 40 grams! I suppose you can go that high…it’s not uncommon to still have ‘problems’ even with all of that stuff you are taking. I swear that the meds can actually make things worse. I hate to tell you that, but asacol made the UC a lot worse for me, at least. I didn’t get real remission until I stopped taking the meds and went completely natural. That’s just my experience, anyway.

          Cheers for now, Kimberly :)

          • KimberlyHI
            KimberlySeptember 25, 2013 at 10:43 am #

            Thanks so much Bev!!

          • bevSeptember 25, 2013 at 2:36 pm #

            Any old time Kimberly!
            :)

  6. Joan H
    HopeSeptember 6, 2013 at 4:18 pm #

    Hi Kim,
    Just wanted to comment after I read your story. Boy, you are a strong person! UC sometimes puts us all through a lot. We’re tough people, us UCers :) I have not had to go on remicade, it’s been kept in the background. I’ve been on all the other meds you mentioned, have 4 kids (now 16,18,20 and 22 years old) and pregnancies went as fine as pregnancies go – UC was not the biggest issue for me anyway. And I was more constipated while I was pregnant, which had it’s benefits at the time. I went from asacol to lialda two tabs twice a day, take canasa rectal suppository once at bedtime, and nexium. These have worked well for me. owever, my past two years have had a lot of ups and downs with UC. Originally it was just one lialda a day and it did increase over the past 2 years. NOW, I am cutting down the lialda slowly. The biggest thing for me that made a difference was starting probiotics, I take Renew Life 50,000. I took Bev’s suggestions when I first went on this site and the probiotics made an immediate difference – the pain went from incapacitating to very minimal to almost never have it any more unless I eat something I’m not supposed to. The bleeding stopped within days and stool became semi formed and now often formed. I also have kept up with reading on the site, and Adam published findings on Lialda this week that said it’s not taking more lialda that makes it work, but it’s taking it consistently. Some of the researchers are recommending lower doses of lialda if you take it regularly — asacol breaks down starting in your upper GI tract, but lialda is made to start breaking down when it starts to hit your large intestine so it delivers the medicine exactly where it needs to be in the GI tract. But because I wanted to cut the pills down if I could, I asked my Dr about it and she said “Sure, try tapering it over time”. So far, so good. The pill form of canasa/asacol or lialda won’t decrease the rectal form the way that works. The rectal form is made to deliver the med directly to your rectal mucosa, that’s why it’s in suppository form and that’s why it works there. So don’t worry about that. Whatever you do, take it slow and see how your body reacts to what you’re doing. Like Adam said a while ago, if you do something with diet/med change too fast and go in a flare, it takes a while to get out of the flare. But if you go slowly, give your body a chance to adjust and let you know if it’s a change that’s good for you, it puts you in a better position. Yes, I agree with everyone too – it’s scary to make these changes, and it’s always on your mind what you eat and what if you have another flare. So it’s good to know we’re all in this together, and than you to Adam for this site, and to everyone who contributes and helps each other out! It’s great! Best of everything Kim! Let us know how it’s going :)

    • bevSeptember 6, 2013 at 9:54 pm #

      Love hearing this, Hope! Keep telling all the new people your story. It’s important that as many UCers as possible know that probiotics can work! You just have to get on the right one.

      :)

    • KimberlyHI
      KimberlySeptember 7, 2013 at 12:35 am #

      Thanks Hope! I think that the probiotic might be helping already, has only been 2 days but wow, Bev’s right people should give it a try. Also, I have a GREAT GI doctor, very understanding and listens to me, he believes in the medicines and all that but he knows it doesn’t work for everyone. So I can see though why he doesn’t want me to dramatically change a bunch of stuff, because as you are saying if I do and go into a flare it could be months before I get better. So while I wanted to immediately drop the remicade and start Lialda and probiotics/diet/l glutamine, he wants me to take it slow by getting off remicade over time while on Lialda. As long as things go well. But now I’m thinking I should hold off on my pregnancy plans again until we figure everything out. Sigh. Although he did say baby will be fine…it’s just risky and scary. He has started me on 4 Lialda pills (which are like horse pills) and I’m used to the 8 asacols. So it sounds like I am on a pretty high dose for now. Thanks for your great post Hope! :)

  7. SamanthaSeptember 6, 2013 at 9:03 pm #

    Hi kimberly!
    I was on lialda (another mesalamine) for about 8 months. Worked great at first and then i started to flare. A year later i was put back on it and it worked again.
    So yes i have gone off a mesalamine then back on with positive results.
    I hope you start feeling better soon!

    • KimberlyHI
      KimberlySeptember 8, 2013 at 9:14 am #

      I am so glad to hear that, because my hope is I can start treating the disease again with mesalamine rather than the other drugs. Thanks Samantha!

  8. Joan H
    HopeSeptember 7, 2013 at 5:36 am #

    Hi Kim,
    Yes, the lialda is on the higher side of dosing. When the high dose of asacol is replaced, they start you on the higher side of lialda to make sure you don’t flare, but it looks like you can eventually taper things again, slowly and see if you’re still doing okay. I did look into the research Adam posted on the GI meds (lialda in particular) and the research is showing that consistency in taking the pills is just as effective as the number of pills being taken, so it’s possible to eventually take fewer pills with the same results. The probiotics definitely made a huge difference, and I had a friend who was an Registered Dietitian who told me that research is showing a MINIMAL count of 10,000 active cultures is recommended daily for adults. It should be mixed strains, as many strians as possible with thermophilus and bifidus in it. I went from 10,000 to 15,000 to 30,000 to 50,000 active cultures over about 4 weeks. Immediate change, as I was telling you. I also tried the L Glutamine – one dose two days in a row. For me, that was like glue in my intestine – too constipating. But I may try again later as I see how this lialda taper goes. My thoughts are that each person with UC is so different – we share what we know did or did not work for us, each one of us can try something and learn from the others, and that there is no real magic formula but it’s all unique to each person. Probiotics seem to be a common theme among most people here. The other thing is I recall pregnancy with UC being okay as far as the UC went. The other parts of the pregnancy were like any pregnancy. Have you talked to your OB-GYN about the possible side effects of remicade on a developing baby? Or lialda? I think if it’s your dream to have another child, that might be a good route to ask them for inout before the pregnancy. I’m pretty sure lialda is okay during pregnancies. Best of everything to you Kim
    :)

  9. KimberlyHI
    KimberlySeptember 8, 2013 at 9:25 am #

    Thanks for soo much great info Hope! Well my GI doctor says the meds, even remicade, are fine during pregnancy, not sure about OBGYN but I think it is a category C drug, so normally OBGYN kinda frowns on it but will let you take it if you need it. It’s one of those well it’s unknown if it has affects on the baby…but better to take the risk than risk a flare because the flare is even riskier. That’s how the doctors seem to feel. Either way I hope this next infusion is my last anyway but we’ll see. It seems the probiotic and/or Lialda is helping but hard to tell so soon. Just going to give everything more time!

  10. SharonSeptember 8, 2013 at 1:40 pm #

    I took Asacol during my pregnancies and have 4 healthy kids. I can’t answer about Remicade but I had no concerns with the ASA drugs.

    Sharon

  11. NancyNovember 10, 2013 at 1:31 pm #

    I have had a problem for about 3 weeks and going crazy. I am on Entocort 9 mg a day with Lomotil 2.5 mg and an occasional Immodium here and there. I went for blood tests and fecal tests as well. I haven’t gotten them back yet but want some changes. I know a colonoscpy will be ordered, but I can’t go for one now as my husband is going for Chemo and he needs me at his appointments plus I have no one to take me for the procedure. I am desperate and will try anything at this point. HELP

  12. Joan H
    Joan HNovember 10, 2013 at 7:43 pm #

    Hi Kim – I really want to encourage you to call your local Crohn’s/Colitis Foundation local chapter. They can often help with volunteers who will give you transportation to and from the colonoscopy. It’s important if they recommend one that you’re able to follow up with the symptoms you have going on. The stress for you with your husband – I’m so sorry to hear he’s going through chemo right now and that’s gotta be adding to your stress. It might even be making your symptoms worse but still you should follow up and get checked out. Thing is, it might even help your husband to know that you are getting follow up-he’s probably worried about you, just like you are about him. It might help his chemo go better, believe it or not. There is also transportation and extra help offered by the American Cancer Society local chapters if you need that so he can get to chemo on the days you might need to take care of you. Also, if you can remember to keep taking your probiotics (I take Renew Life 30 billion count) once a day with water on an empty stomach, thanks to Bev. Tis has considerably controlled my symptoms and taken me down to not even a quarter of the number of mess I was taking before. Please keep in touch and let us know how you and your husband are doing – we’re all routing for you!

  13. ConnieNovember 19, 2013 at 1:29 pm #

    I am on Apriso and seems to be doing the trick for me. I’ll probably take it forever though. February seems to be my month for flares and hospitalizations, so I’m hoping this year 2014 I’ll be good. Best of luck with getting pregnant :) On a side note, my son is stationed at Kanohoe Bay MCAS :) My husband and I retired from there in 1986 . Semper Fi

  14. KimberlyHI
    KimberlyNovember 20, 2013 at 10:58 am #

    Hi Connie,
    Thanks for your note! My update is that I started taking Lialda in Sept and it is helping, so it looks like Mesalamine does still work for me. And, I am 7 weeks pregnant and hoping for the best! I am pretty close to remission althought not 100%, and I am on the Lialda, probiotic 50 bil, and remicade. The doctors have told me those drugs are ok for pregnancy.
    We are at Kaneohe MCBH too! It’s a great duty station. I do miss the mainland a bit!

  15. ChrisFebruary 13, 2014 at 11:39 pm #

    Hello Kim,

    I have been diagnosed with UC and have been dealing with it for about 2 years now. I have tried canasa and sulfasizne. After some doses of canasa, bleeding stops for a few days and it continues.

    These meds are very expensive so I want to try another route. More specifically, the fecal transplant route. My current doctor here in Hawaii, Poli Momi doesn’t believe in it. Can you please give me the name of your doctor so I can get a referral to see him since he is open to it?

  16. KimberlyHI
    KimberlyFebruary 15, 2014 at 12:17 pm #

    Hi Chris!

    Yes, my doctor is Dr. Patrick Kenny. Right now he works at Tripler, but he is about to move to Kaiser in around May. If you can get a referral to him, I would highly recommend him. I have been seeing him over a year, he is very open and understanding and very easy to talk to. I never feel rushed at his appointments and he makes sure to answer all my questions. I have spoken to him about fecal transplants as an option down the road. He is one of those doctors that really cares for his patients.

    Before him I had seen Dr. Glenn Pang at the Queens medical center. He was really nice but I don’t know how he felt about fecal transplants. He wasn’t as thorough or easy to talk to as Dr. Kenny is but was ok. So I really hope you find someone that can help! Let me know if I can give you any more info! :)

    • ChrisFebruary 16, 2014 at 7:24 pm #

      Aloha Kim,

      Thank you very much for your reply and information. Unfortunately, I am not a military dependent anymore since my dad retired. I have UHA right now so I have been searching for a doctor in my plan that would have another alternative. I really liked Kaiser since its sort of like Tripler in which everything is in one area. Kaiser was actually where I got my first colonoscopy.

  17. ChrisFebruary 16, 2014 at 7:35 pm #

    Sorry, I submitted by reply accidentally…

    I just finished my treatment of Mesalamine since the Canasa was too expensive. Right now, I have been having normal bowel movements without any blood so hopefully it will remain like that. I am taking Sulfasalazine 4 times a day which doesn’t really seem to help minimize the bleeding. Although I am not too sure since this is all new to me.

    I know it’s been awhile since you posted on this article, how are things working for you with your current medication? Are you still taking the same ones? I am a little picky on what I want to take since I am a vegan and want to try and avoid gel capsules or lactose. I understand that will make my battle much harder but if I have to, I would make exceptions.

    I do understand that you have a different medical provider but if you happen to hear of any doctors in the UHA plan that may be open to fecal transplants, please let me know. My friend who is currently in school for nursing is the one that told me about it. He even showed me some Youtube videos which shows that I can do it on my own but I would just like a professional opinion so that I know that I am not harming myself.

    Chris

  18. KimberlyHI
    KimberlyFebruary 16, 2014 at 9:10 pm #

    Aww I was hoping you could see Dr Kenny when he moved to Kaiser! Oh well, there has to be another good one on island that will help. I will let you know if I hear of anything! Have you ever gone to the crohns and colitis meetings they have in Honolulu? I have not been to one yet but I guess they have tons of references there including doctors to speak with, and other people with IBS..anyway here is the website
    http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/

    As for me, my meds changed a little, I was on remicade and imuran, now I am on remicade and mesalamine and canasa. They help a little but I still have some issues. The imuran I stopped because I am now pregnant and that is kind of a bad one to take while pregnant. So since i am still having issues we believe I have built antibodies to remicade so it is not working as well. So I will probably be stopping that one and trying other things, My options are Humira, some other new drugs that are out, fecal transplants…don’t know what else! But we don’t want to make any changes until after I have the baby so for now I am staying on the same meds. The mesalamine pills and canasa still help but do not keep me in remission. The first 10 or so years of having UC I was able to only take mesalamine but not anymore :( Good luck and keep me posted!

  19. ChrisFebruary 18, 2014 at 10:45 pm #

    Aloha Kim,

    Yeah, I was bummed when I heard he was going to a place outside my plan. But I will continue my research. This is such a crazy condition and I would have never believed I would, one day, have it.

    Right now, things are good but I foresee an episode in another week or so. Thank you for letting me know your meds, it helps me research more and just have a better idea of other options.

    Thank you again for your info, I will definitely update you on my status. I will look into that meeting you provided since I think its good to be around people who have to deal with this.

    Chris

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