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Skeptical about the Diet, or Naive about the Meds?

Jenny Mom fullMeet Jenny:

I am 28 years old, and a stay at home mom of a 13 month old girl. I used to be a middle school English teacher, which was enjoyable, but I absolutely LOVE being at home with my baby girl. I wouldn’t give it up for anything. I’ve been married 3 1/2 years. I have been a Christian for 6 years now, and I help out with the middle school youth group. (My husband and I met because we both started helping in the youth group on the same day!) I was diagnosed with UC yesterday, after almost a year of symptoms, which started when my baby was 3-4 months old.

Some more about me:

As a former English teacher, you may already guess that I love reading and writing. I was born and raised in the same neighborhood that my husband, daughter, and I live now. (He bought a house in that neighborhood before we even knew each other.) I used to run (slowly) for fun, doing 5k’s and once a half-marathon, and I miss doing that. I can’t remember the last time I had energy to go running. Believe it or not, I have two sisters-in-law with Crohns/colitis, even though we aren’t blood related. What are the chances??

Colitis Symptoms:

Currently I have bleeding and frequent urges to go with some cramping, though usually when I do use the bathroom it’s only blood that comes out. I am also tired a lot, and I have a lot of gas some days.

Skeptical about the Diet, or Naive about the Meds?

When my baby was 3-4 months old (late April or early May) (and there had been no changes in vitamins I was taking, I was still nursing, nothing at all really changed…) I started noticing spots of blood on the toilet paper. I thought maybe I rubbed to hard, but then it stayed around a few days, a week, a couple weeks… and the blood increased in volume. So I finally told my mom (a med tech) and she nagged me until I finally went to my general practitioner. She told me I had a hemerrhoid, and to use preperation H. I did, for a couple of months, but the bleeding got worse. I was due for my OB/GYN appointment anyway, so I had him look at it, and he said it was hemerrhoids, too. He referred me to a D.O. who specialized in hemerrhoid treatment. By the time I saw him, I had been bleeding for 3-4 months. He saw my hemerrhoids, and tried to band them three times. When the bleeding got worse, and my bowel movement frequency started to increase, he su ggested a colonoscopy. I had that done in November, but all the biopsies he did came back negative for any kind of disease. He gave me hydracortisone suppositories, which helped, and he wanted to test me for bacterial overgrowth, but when I looked that up I had almost NONE of the symptoms, and the symptom list of that didn’t include bleeding, which I considered my main symptom. I started to feel like he wasn’t really listening and was just running through his usual battery of tests, so I got my records from him and went to a new doctor- a GI that was also an MD (rather than DO). When I explained my symptoms, he was already thinking colitis, but since the previous biopsies (which probably weren’t analyzed right) didn’t show anything, we both agreed it would be wise to do a flex. sig. to get a new sample. I did that Valentine’s Day (so romantic!) and he knew he was looking at Colitis. When the biopsy results came back and confirmed that, he called me i n (yesterday, Feb 21) and prescribed a mesalamine suppository and tablet for 2 and 6 weeks (respectively) with a follow-up in two weeks to see if I have started improving.

So many people keep suggesting diet changes and asking if I will change my diet. I’m torn because my doctor and my mom and even my own skepticism keep telling me that science hasn’t proven diet changes help, and these testimonials could all be spontaneous remission and the placebo effect. I have a sister-in-law who has suffered with colitis/ Crohn’s for 10 plus years, and had her colon removed, and is faced with more surgery. (She is currently trying SCD, but it isn’t helping enough.) I watched a video from a doctor at Mayo who said that colitis patients with 30 years of the disease have a 25 percent chance of having their colon removed! As a 28 year old, I probably will live 30 more years so…. could that be me? I guess I would just like more info from people who have tried the diet. Have your symptoms REALLY disappeared completely, forever? Or does it just go through remission and flares just like it does with the meds? Why did you choose to do the diet ? What diet did you do? What research did you do about your diet? Is there someone who did meds, and they worked fine, and they never changed their diet? Etc. Thanks!

Colitis Medications:

Mesalamine is all I am on right now! I just started it yesterday, so we will see if it works.

written by Jenny

submitted in the colitis venting area

17 thoughts on “Skeptical about the Diet, or Naive about the Meds?”

  1. Jenny,

    I took Mesalamine in pill form (Asacol) from 2001 to 2012 with no diet changes. The meds worked ok to keep me in remission but every couple years or so I would have mild flares. Actully, every time I tried to add more fiber to my diet I would flare. Then I would have to use mesalamine suppositories to get the flare under control. In about 2006 I started flaring more and more often, I would only be in remission a few months at a time, which I think was stress related. In 2012 after several flares including 2 severe ones they finally took me off asacol thinking that it may not be working so well any more. They changed me to immunosuppresant drugs, Remicade and Imuran. I am on remission now on these drugs and slowly decreasing the imuran so I can just be on remicade. I finally tried the SCD diet just this past january to february, while on meds. Again I think the diet upset my UC maybe because of the nuts and veggies, maybe too much fiber. So I went back to just a normal diet for now. But I have heard many people say this diet cured them. I find most people choose the diet over the meds because they either tried all the meds already and they stopped working, or they were scared of the meds potential side effects and risks so opted for the safer route of a diet. A lot of people find the meds stop working after awhile, like my asacol did. Eventually you run out of meds to take! That’s when people face either surgery or diet changes.
    I am 34 and first time mom to a 14 month old, and I stay home with her as well! It is so great. I love being with her all the time. We try to do short 20 minute runs now, I have done 2 half marathons and one 5k but have issues running longer distances now, but I love going so I try to do short runs.
    Everything will get better, you will figure out what works best for you! Even though a lot of people do great on diets ect, some people it does nothing. So you just have to try things out and see what works! But I really honestly would prefer continuing asacol, I have talked to my doc about trying to go back to asacol next year to see what happens (remicade and imuran are much scarier drugs than asacol!) but if I do that I will have to probably make sure to watch my diet to try to avoid flares and also try not to stress. Good luck Jenny!

    1. 14 months is such a fun age! My daughter loves going to the park and chasing the ducks, and she’s talking up a storm now!
      Yes, the more stories I read on here, the more I am starting to realize that there’s a trend- meds stop working at some point. So I have tweaked a couple things in my diet (turned down raw veggies a few times, etc) but I guess it might just be trial and error to find my trigger foods. Some people tell me no raw fruit, but I have been making a lot of smoothies lately and can’t tell if it is making a difference. Do you find that fruit bothers you?
      I hope everything goes well for you! Thanks for writing!

      1. It is such a fun age, in fact every second has been fun just for different reasons! She loves to go outside and just explore. Plays with rocks and leaves and flowers, luckily does not try to eat them too much :)
        As for raw fruit…I haven’t noticed a problem if I eat an apple, orange, or pear. I have noticed I can only handle half a banana. Smoothies actually do sometimes upset my tummy, if I have too much. But I have not eliminated any fruits. How about dairy? I know that is a big problem for a lot of UCers. I am pretty sure if I drink too much milk or have too much ice cream it causes problems. When I have veggies I just have them cooked although I can do salads and carrots, just not a good idea to have raw broccli for example, but also if I have a lot of cooked broccli that is not good either. It’s really hard to figure out what is bad! My doctor said no fast food, no fried food, and nothing processed! Which is much healither for us anyway.

        1. Thanks! I have pretty much eliminated dairy, except that I still eat Greek yogurt from time to time. I’m thinking once I finish this container, I won’t buy any again, though, because I think it is making me worse after I eat it. I still eat cheese, but that doesn’t have any lactose in it, and doesn’t seem to affect me.
          I haven’t had a smoothie for a few days, and I think I actually feel better without having that. It’s hard that things that I used to train myself to eat because they were healthier, now I’m eliminating because they are harder to digest!

  2. I think we all know when it comes to UC or CD there is not one size fits all in the management category. If there was a manual that they handed out I would say in the beginning to get to know your basic numbers. Inflammation numbers (Non cardio CRP, SED Rate) Anemia, Iron, Vit B, and all the D’s. While you are at it have them perform all the stool tests you can checking for bacterial imbalance and especially C-Diff. You doctor might say no need I know what I am doing but I would insist especially if he/she is making this determination based on sight rather than definitive tests. Fodd alergry test are a big item for people as well. Add to all of that at least the Mayo IBD Panel (can be run locally) and I would imagine insurance ill cover it:
    and if your insurance covers or you can afford do the
    panel but call first as they give a discount for people who either do not have or do not use their insurance when ordering (35%).
    Right off the bat you have probably seen on this website different strategies for non RX anti flare procedures. Some are even bold enough to use the word “cure”. Well I would venture to think they are good stratigies for those people that work for them in keeping at bay their own individual flares. EVOO “Extra Virgin Olive Oil” has some pretty strong evidence that it helps keep at bay symptoms. FMT “Fecal Transplant” has some very strong evidence as well especially when the cause is a floral imbalance. With regards to C-Diff or C Diff UC “cure” is the appropriate word for FMT. Enemas for Vit E and other types of enemas are worth trying as well as a new version the Olive Leaf extract gel pill enema that worked for one adventurous members recent flare. Know you numbers. Try and experiment with alternatives. If all fails then go back to your RX. I would definitely check into doing at least the EVOO for a few weeks with the shorter range plan of FMT.

    1. Thanks for all the info! I will have to take some time tomorrow while my daughter is napping to look up those links and research what all those numbers/ acronyms are! Haha. I’m obviously new to this. :) I know my GI did several biopsies that were tested and came back positive for UC, but I’m not sure exactly what those were. I’ll definitely ask about C-Diff at our next appointment on Monday, because I’ve seen it mentioned on this site several times and I know one of my sisters-in-law had it in the early stages of her Crohn’s too.
      Thanks again!

  3. Hi Jenny,

    Yes there is not enough clinical studies to provide the evidence to say diet is or cure or what not but there’s no reason for you not to give them a try. I don’t follow any legit diet that are on here but made my own. I have had UC for 11 (9 on remicade) and watching what I eat has contributed to me just feeling much better. I’m of the belief that diets that completely eliminating certain food groups isn’t the best option (I mean we’ve been eating bread and cheese, etc. for couple thousand years and everyone did just fine on them). I think the problems are with all the highly refined sugars and carbs (like bleached flours, white sugar etc. and ALL THAT ARTIFICAL CRAP!). So I focused on eliminating those. I eat whole grains, use cane sugar when I bake or honey, and I cook from scratch a lot so I know exactly what’s in my foods. When you’re still really active you do need some of those long term carbs (not to mention it does help you keep some weight on which can be hard with UC). As far as the meds, it really is different for everyone. I’ve been on remicade (a biologic) for a long time and it really works for me I haven’t had a serious flare since starting it. 6-MP and Methotrexate (immunosuppresors) didn’t work. But my UC is actually caused by my wacky immune system deciding to be different and start attacking my liver then thought it would be fun to go after my colon as well haha. So for me drugs are the only serious contenders to my treatment but for a lot of people on here diet can really help if not be the only thing that actually works. You just need to try things and see what works. As far as the 30 years/colon out part yes the longer you have an “active” (that’s key) disease the more chances you have of colon cancer/needing your colon out. But if you get your disease in remission and keep it there (talk to Bev who is successful doing fantastic!) your chances won’t be as high.

    Good luck!

    1. Hey,
      It’s funny that you mentioned sugars, because I did decide to start eliminating that last week and I HAVE been feeling better! My reasoning was that my whole life I’ve always known that if I eat too many sweets I get diarrhea, so now that I have UC maybe I should cut them out to try and cut out the urges to go. I’ve also eliminated raw veggies, bc ever since high school I’ve noticed that my stomach hurts if I eat a lot of raw veggies or a big salad. So that’s kind of become my plan of attack, stop eating things that gave me mild problems before, because maybe they are big problems now.
      Sorry about your crazy immune system! So your liver was in trouble BEFORE your colon? How are you feeling on Remicade? I know my sis-in-law is on that and she says it works great.
      Thanks also for clarifying about “active” UC being the problem! That’s a huge relief! Still hoping the bleeding stops with the Lialda, though… So far the frequent urges to go have stopped and the amount of blood is less… We’ll see!

      1. That’s great what you’re already doing, it really comes down to what works for you! They were diagnosed at the same time as UC or another autoimmune disorder always presents with Type 1 Autoimmune Hepatitis. That’s why we jumped straight to immunosuppresants in order to stop more liver damage from happening. It’s been in full remission though for about 10 years thanks to remicade. AH only has about a 2 year remission rate if they take you off meds. I just think its amazing how many causes of UC there can be…its almost like UC needs to be subdivided even further!

        I love remicade. I’ve never had any side effects from it luckily. I actually look forward to the infusions because it always gives me a nice boost of energy and I’m glad to hear its working great for your sister-in-law! You should also look into avoiding artificial food colorings, pop, and any NSAID pain relievers as they all can inflame and irritate your intestines. Only take tylenol if you need a pain med. I really hope everything gets under control for you soon! And keep us all updated on your progress! :)

        1. Wow, remission for 10 years! That’s awesome! I’m so glad remicade works for you!
          Haha, my doctor DID say no NSAID pain relievers, which to me translates no pain relievers. I’m pretty sure Tylenol is just a placebo, for all the good it does me.
          Do you know if cold medicines are a no no? I am just coming down with a head cold…
          Still bleeding some, unfortunately. I am definitely much better than I was pre-Lialda, but I am definitely NOT in remission. I have this foreboding feeling of prednisone in my future…

          1. Hi Jenny,

            As long as it only has acetaminophen as the pain reliever you should be fine. When I get colds I usually don’t take the any of the pre mixed stuff. I just get a good decongestant and take tylenol for the aches and pain.

  4. Hi Jenny, I have had UC for 11 years now I am 48 and from the UK. Everyone with is different and we need to tailor our drugs etc to suit, but I have to say the drugs simply masque the problem. I honestly do not believe its diet, if it were that simple we would all be well. Mine is my immunity which atttacks my colon. Anyway I have been in flair for 7 solid months with no sign of suppression, my body is not responding to anything. I am having my colon removed on Tues 12 March, I have opted for a permenant ileostomy I want this illness gone. I have been at deaths door and no amount of drugs or diet can cure us cos its lifelong without elimination of our colon. I truly hope you an control yr UC for yrs like I did. But I have run out of options and I have tried everything. All the best honey x x

    1. Hi Julie! I’ve been thinking about you; sorry I didn’t get to respond sooner.
      How are you feeling? How did surgery go? I hope you are recovering easily. I know that can’t be an easy decision to make, but lately I’ve read so many stories on here of people who are so happy that they had that surgery, so I hope you get some relief, too! I’m praying that you are feeling well!

  5. Hi Jenny,

    I am 43 years old and fought the ups and down of UC for 23 years or so until I finally lost the battle. I tried every medicine in the book but the remission would only last a short time. I also tried many diet changes with no positive effects. I can tell you that I was in remission for 3 or 4 years and feeling good and just out of the blue had the worst flare ever which resulted in quick dramatic weight and blood loss to the point that I was headed towards a disaster if I did not get my colon removed. I had it removed in january an feel better than I have for long time. I hope you never have to have that done but it really is not that bad. My life without a colon so far is a hell of alot better than life with one. Just my personal opinion but avoid remicade and humira, my GI thinks the remicade I was having injected made things much worse and the side effects were not good for me but everyone is different.


    1. Thanks for the positive look on colon removal! It is scary to think about a big surgery like that possibly in my future (or maybe probably) but I so appreciate reading everyone’s stories who is HAPPY that they had the surgery. It makes the future a little less daunting to think about!
      So now that your colon is out, obviously there is probably healing/recovery from surgery but other than that… is life normal? Like, no more flares? That might sound like a stupid question, but my sister in law had her colon removed when she was really young, and then somehow it didn’t cure her… I think because she actually had Crohn’s and not UC, but I just wasn’t sure how that all went.

      1. Yes Jenny, life is normal other than dealing with the “bag”. I really dont know its there except for when it is time to change or empty. Mine luckily is only temporary. I et my J pouch later this summer and I am excited. It sounds like your sister in law has Crohns because it will come back to where UC will not. It is verynice to be able to eat anything and not get sick.


        1. Thanks for the clarification! I was scared that I would eventually get my colon removed, only to not be cured. It seems like she got misdiagnosed, but that was also 15-20 years ago, and I think she was in pretty bad condition so they took her colon almost immediately. I guess if I go on a few years and still am diagnosed with “just” UC, then colon removal won’t be such a scary idea! I’m glad you are feeling good… let us know how the J pouch surgery goes later this summer!

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