Been Here Before

Meet Matt:

I am a 24 year old male who was diagnosed with UC when I was 18. Two years ago I had my last colonoscopy. This showed the inflammation was definitely less and not as high in the colon. I am currently going through a flare and I believe I’m overthinking everything. I have been on and off the SCD diet for years and now I’ve been strict for 25 days, as of today.

More Matt:

I work three different jobs. I am in sales at one job, I coach Ice hockey, and I am a part owner of a bourbon company. I enjoy playing hockey, hiking, and working out. I am from Connecticut and have lived here all my life.

Current Ulcerative Colitis Symptoms:

I am currently going through a flare. I wanted to jump right on prednisone to calm things down, but I had to switch to a new doctor. I currently have bad cramping, blood and mostly watery stools. There will be some matter, but not as much as I would like. I think the cramping is from the stool trying to get more formed. I also have a cold at the moment, which doesn’t help the cause.

Matt’s Story

I would like to hear from others. First, how long before prednisone kicked in? I’ve been on 30mg for 4 days now and the progress is not as fast this time as it was in the past. Second, what tips I should know going into the SCD diet, this time, as a long term plan? I can see the light at the end of the tunnel, but I am having a hard time getting through this flare. I will not touch biologics and I know my case isn’t bad enough to need them. In the past I’ve had success with the SCD, but I didn’t take well enough notes to see the daily food and bowel changes. UC has been annoying as all of you know, especially when in a flare. This flare, I am keeping a journal to show all changes for future use. I am excited to get back into remission and keep it that way. I know small flares may happen over time, but I never want to get back to this point, where it’s controlling most aspects of my everyday life. My family, friends and girlfriend are extremely supportive with everything, and I can’t thank them enough. I know I can get better and keep it that way. I let myself and my supporters down because I started eating junk food again.

I am currently taking 4 lialda pills and 30mg or prednisone for a week then weaning down. I’ve looked online ( I know, stupid of me.). Saying that prednisone doesn’t always work and that the next step is stronger medication. I’m excited and anxious about the diet and the changes I am going to see. I know the diet works and the medications will calm things down so healing can begin. I just need some reassurance.

I know the SCD works. It has helped me get my life back. I will continue to do it and not look back. I also know that prednisone and lialda work wonders. I just would like to hear some views from others.

written by Matt

submitted in the colitis venting area, CLICK HERE to submit your’s!




34 Responses to Been Here Before

  1. Lorena Ojeda February 26, 2019 at 5:33 am #

    Patience…. you will get out of it. Don’t let desperation kick in. If your inflammation is in the rectum or left side ask your doctor for some mesalamine suppositories or enemas. They can also help topically. I’ve had UC for over 12 years now and currently on Remicade. My last flare up was bad. But like I said, you will come out!!!! Diet is super important. Keep the SCD!

    • Matt 24
      Matt February 26, 2019 at 4:16 pm #

      Thank you Lorena! Haha how I wish it was so easy to be patient. But I am doing my best and I am sticking with the diet. I’m excited for what time future holds. It’s very helpful knowing I’m not fighting this condition alone.

  2. ande smith February 26, 2019 at 5:41 am #

    Hey Matt…Although food is a major component in fighting UC I also believe that this disease stems from a dysfunction in the microbiome of our systems. It took me 16 yrs of uc and 1 yr of c diff for the bell to go off in my head after hours of research….We all hear the auto immune part and the scientists are working hard to fight the symptom but till just recently we are seeing more trying to fight the reason…thank goodness…My bout with c diff was not too severe till I took the antibiotic vancomycin which not only will kill the spores but a huge amount if not all the good bacteria along with it…So I started with high billions of probiotic and almost immediately the D stopped and so far I no longer see any blood…Now this is my story but maybe it might help someone else…all the best

  3. Jeff G
    Jeff Grim February 26, 2019 at 5:50 am #

    Hey Matt

    I just am getting over a long 2 month flare. I have been on all all the meds at one time or another including biologics. I would find remission and then flare again. This past December after being symptom free for over a year I got a sinus infection and it threw me over the edge. Blood, mucus, cramping it all hit me like a ton of bricks. Instead of running back to the Dr for meds I went natural. I started to fast (5 days) with only a vegan protein powder. Cut out raw veggies and all processed food when I reintroduced solids. I also took some natural supplements to help heal my gut lining. This is all working and I am feeling sooo much better!There is a website called “listen to your gut”. Go to it. Your answer is there. Wishing you the best!

    • Matt 24
      Matt February 27, 2019 at 6:13 am #

      Hey Jeff,

      Thank you for your story! I’m going to definitely take a look at that website today when I get a minute. Thank you so much for the advice and support. It’s greatlt appreciated.

  4. Charlene H
    Charlene Hawkins February 26, 2019 at 6:32 am #

    Matt, the prednisone should be kicking in any time now. Uceris is also an alternative. Less side effects.

    I have had mild to moderate UC for 30 years. I haven’t had a major flare in 20 years. At that time I was put on mesalamine (Asacol) & azathioprine (Imuran). I added Align probiotic and a soluble fiber pill to my diet about 5 years ago. They cut back on the “mini flares”. I also recently started yoga.

    Having support from your family is the most important thing. I’ve been lucky there too. Occasionally I wonder what my life would have been without UC. I’ll never know. You are young enough that maybe they will find a cure in your lifetime. In the mean time, just know that you are not alone.

    Best wishes.

    • Matt 24
      Matt February 27, 2019 at 6:18 am #

      Charlene,

      Thank you for the comment. I’m on day 8 of prednisone and this is my first day lowering from 30 to 20 mg. I think last night there was some progress and I’m slowly and I mean slowly seeing improvements. It’s great to hear that you have been able to control your symptoms. It makes me feel better about my situation. I’m excited to see what research can shed light on in the future. For now, I will continue to eat SCD and hopefully be able to get back on my feet before the warm weather. Thank you for the support!

  5. George February 26, 2019 at 4:20 pm #

    Hi Matt,

    For me it usually takes at least a week for the Prednisone to kick in. 30mg is the dose I go to when my symptoms worsen. I have been on may biologics, but most have not worked. I know their are risk with taking biologics, but there are also risk in having your colon inflamed for long periods of time. If, you do decide to start a biologic Entyvio is technically the safest one, but takes the longest to start working. I know this disease can be incredibly frustrating. I hope you feel better soon!

    George

  6. Matt 24
    Matt February 26, 2019 at 4:21 pm #

    Thank you for the response Ande. I greatly appreciate the information. I’m glad there is more research being done, concerning the gut. There is so much going on. I’ve also read, micrbiome research is extremely popular now and is being looked at more than ever. Excited to see what new discoveries arise in the future.

  7. George February 26, 2019 at 4:28 pm #

    Hi Matt,

    Prednisone 30mg is the dose I go to when I start to feel worse. It usually take at least a week for me to start feeling better. I know biologics carry risk, but having an inflamed colon for a prolonged period of time also carries risks. I have tried many biologics. Most of have not worked, so they are definitely not a miracle drug. I am currently on Xeljanz. It you do decide to start a biologic I think Enytvio is technically the safest. I know this disease can be incredibly frustrating. I hope you feel better soon!

    • Matt 24
      Matt February 27, 2019 at 6:22 am #

      George,

      I am hoping this will get things under control. I know in the past they have. My problem has always been ignoring the little symptoms that start to creep back up. I appreciate the support and I’m glad that you are doing well! I glad to hear that there are other medications that have helped you. Definitely something I would look more deeply into if things don’t get better in the long run. Thank you for your comment and the information.

  8. Madeleine Maxwell February 26, 2019 at 7:07 pm #

    So sorry about your flare. I recently felt a flare coming on and I immediately went back to the AIP diet (AIP =autoimmune protocol elimination phase and it prevailed. There is also the Univ of Massachusetts AID diet (autoimmune diet), but it’s not as strict as the AIP which is purely paleo with restrictions. SCD seems to work better for people with Crohn’s, I’ve read. I also am doing a lot of breathing exercises, trying to be positive and doing guided meditations. Some people are having luck with tapping, too. At first MegaMucosa helped me, but stopped working. I cannot tolerate even budesonide. From what I read, we “should” be able to manage our UC with diet. I work with a nutritionist who is an expert in dealing with IBDs (she’s been there herself, big time). I keep checking out every trending probiotic, but haven’t hit one I can trust as ande smith has. Would love to know. Is VSL#3 still a favorite? I’m not sure. I’ve tried the spore probiotics, but haven’t noticed a difference. Mostly I try to get the probiotics from kefir (water based) and fermented foods. Hoping you’ll heal soon. I stretch and tone a lot, but that’s as much for my head as for my body. Still looking for a cure …

    • Matt 24
      Matt February 27, 2019 at 6:59 pm #

      Hey Madeleine,

      Thank you for the message. I have looked at the AIP diet before. I know there were some differences SCD and that paleo protocol. This afternoon I started to see some improvements. I definitely would like to eventually go more paleo, where I can eat potatoes and cocoa. For now I’m going to stay strict to the SCD because I don’t want to risk anything. I appreciate your input and I will look further into that AIP diet. Thanks!

  9. Joanne February 26, 2019 at 9:26 pm #

    So sorry about your flare :(

    I don’t know how many of you are aware of the studies with suboxone. While it may sound scary, with a very small amount of suboxone every second day or so, I have had no flares for more than 1 1/2 years now. The last colonoscopy showed no irritation or inflammation whatsoever, and my Dr. said: ‘This is a miracle!’

    Look into it yourself, and very best of luck!

    • Matt 24
      Matt February 27, 2019 at 7:01 pm #

      Joanne,

      I’ve actually heard of this before! Very interesting though. This is definitely something I could research further if things don’t resolve. Thank you for sharing your experience. Glad you’re doing well!

  10. Coralie Eichler February 27, 2019 at 1:29 pm #

    Hi Matt. Sounds like you actually know how to deal with this. Be assured that the SCD does work. I was on it for 4 years religiously and was in the best health I had ever been in. A specialist bullied me into taking Pentasa, which I reacted to and wound up losing my colon. Thanks doc. So I don’t believe any of the drugs work. We want to kill this disease, not just try to suppress it. The homemade yoghurt is a really important part of that diet that I never did so if you can find a way to make that, maybe the healing process will speed up for you. Your colon is your most precious asset. Nurture it.
    God bless.
    Coralie

  11. Eileen Banke February 27, 2019 at 4:56 pm #

    So sorry your in a flare. Diet “manages” IBD period. I have been on the SCD for 4 years, taking Renew Life Critical Care 50 Billion probiotic (on an empty stomach), so first thing in the morning, then wait 45-60 minutes before eating. Fermented L-Glutimine firms things up, plus helps the mucosal lining of the colon. This should help get you started towards healing. This disease takes discipline and patience for all of us. Also, courage, understanding, ….etc. Good Luck and hang in there.

    • Matt 24
      Matt March 5, 2019 at 4:31 am #

      Hey Eileen,

      It’s so refreshing hearing multiple people tell me that diet is a significant part of the puzzle. I recently added glutamine back into my diet, a day or so ago. I definitely remember it firming and stopping the bleeding. As for probiotics, I want to make the yogurt or start taking an SCD legal one, but I don’t know if it’s the right time yet. I remember my last flare, I added in yogurt and would have had, diarrhea and blood in all of my bowel movements. I want to eventually incorporate it into my diet, but when things settle down. At my appointment today, I may ask to get on the Rowasa and see if that helps clear things up. I hate taking medication, but I really want to get back on my feet as soon as possible. My current medication consists of 7 days of 30mg predisone down to 20mg for 7 days(today is the last day on 20) and wean off as my doctor says today. I am also taking 4 lialda pills daily. Have not really seen any significant improvements while being on the predisone, but these along with the diet should be able to calm things down enough to start the healing process. We will see how it goes. Thank you for your comment.

      Matt

  12. Matt 24
    Matt March 5, 2019 at 4:24 am #

    Hey Coralie,

    Thanks for the response. When I did the diet for the first time, I remember it taking a little time and then the relief was great. I have a appointment today with a new doctor, just to introduce myself. One thing I’m going to make known right off the bat, is that fact that I want to avoid biologics at all costs. I have been on the intro diet for about three days and I don’t notice anything significant. I’m being as patient as I can. Thank you for your support. I’m glad I found this website and have been able to hear about the success stories.

    Matt,

  13. Andrew R March 5, 2019 at 7:45 am #

    I’ve had UC since I was 12 I’m 33 now. I envy everyone who got it later in life lol. All we had was asacol, an enema I forget the name and then the prednisone. From my experience none of it worked. The prednisone was the only thing that made the bleeding stop but it came right back few months later. I refuse to go back on it cause of the side effects. I lived for many years with a flare up lol literally every day was bad. Then one day I ordered cbd used that for about couple months and it was once and awhile not everyday. Then out of nowhere the bleeding stopped. 2 whole years of no bleeding it was great and the only thing I did different was use cbd I don’t know if it was exactly that but I’d have to think it was.

    • Coralie Eichler March 6, 2019 at 2:01 am #

      What is cbd?

    • Matt 24
      Matt March 6, 2019 at 6:41 pm #

      He Andrew,

      I was looking at some information concerning CBD oil recently. Definitely something I will look into in the future. Thanks for sharing that information.

  14. christa Parish March 5, 2019 at 8:04 am #

    It feels like everything hits hard and is slow to stop. I take peppermint oil capsules for the immediate pain. it took me years to get to a remission point, but flares are milder now.

    • Matt 24
      Matt March 6, 2019 at 6:42 pm #

      Christa,

      Thank you for sharing that information. I’m glad you are in remission now!

  15. Sam K
    Sam K March 5, 2019 at 1:16 pm #

    Hey Matt! Be patient. You’re doing great. I’ve learned the pred takes longer the more rounds I’ve done over 14 years.
    Have you tried breaking up the dose of 30mg? Also, water is sooooo key. Chug up lol
    Have you done food allergy testing? I did years ago while on SCD and found I was allergic to a lot of the foods on that menu. Just a thought.

    • Matt 24
      Matt March 6, 2019 at 6:39 pm #

      Hey Sam,

      First off, thank you for your comment. I was thinking that was the case but didn’t want to believe it. I was on 30 for 7 days and my doctor told me to stay at 20 for 2 weeks, since symptoms weren’t cleared up after the week of 20mg. I am on day 8 on the 20mg. Things seem to be slowly getting better, it’s definitely one step forward, two back some days. I have not tried breaking up the doses. That’s interesting you say that. My doctor also is starting me on Canasa tonight to see if that can help get me out of this flare. As far as allergy testing, I have been tested and don’t show anything significant for the legal scd foods. Thank you for the comment.

      • Sam K
        Sam March 18, 2019 at 6:28 pm #

        Good to see you’re doing better. Also glad the SCD sits well with you.
        I really appreciated the Canasa approach too since my issues are more rectum/lower gut.
        Make sure your Dr doesn’t ween you off the pred too quick. If you still have blood, I would ask him if you should stay at 15mg longer.
        You know your body best so be vocal. I’m sort of a hardass but sometimes I’ve had to be stubborn with different GIs over the years because only you know how you’re feeling. Here’s to no pooping the pants haha Bad UC humor, I know.

  16. Jennifer March 13, 2019 at 7:20 am #

    Matt,

    Sorry you are going through a flare up. My son was diagnosed at 15 and the past year had flare up pretty bad. he has been on all of the meds that didn’t work and prednisone both times were a nightmare for him. The GI of course got my sons ear and told the miracle of his life will be getting his colon removed and getting the j-pouch. He even told him he will then enjoy his senior year in High school. I am trying to save his colon. he thinks i am wrong and the doc is right. We have had him on an elemental diet (7 shakes a day) and mucosaheal,oregano oil and supplements and probiotic powder 3x a day. for the first time since he was diagnosed, spot of blood once a week. his c-reactive protein is in normal range. He was so sick months ago he needed iron transfusions. we are adding food in 1-2 at a time to see if there is a trigger. I have the bood Break the viscious cycle and i will start using that after we are done introducing foods. My GI never talks about diet,stress or probiotics or anything natural at our fingertips. DRUGS, DRUGS DRUGS

    I would recommend this to you to give your colon a rest and let it heal. The shakes are good and full of all of your nutrition and amino acids, with 26 G of protein! I got it from Listen to your Gut. Jini Patel. While on the shakes you can have a lot of bone broth some juice, jello and gummies. most do it for 1,2 or 6 weeks depending how you can mainain. My son did it for 9 weeks and got through the holidays and his 18th birthday!

    Good luck to you!!! thank you for sharing your story!

    • Matt 24
      Matt March 17, 2019 at 3:46 pm #

      Jennifer,

      Thank you for your comment. I definitely will look into that. I have done some reading about shakes and giving the digestive tract time to heal. I find it really difficult because of my active lifestyle. I’m always craving Whole Foods, but I will definitely take a look at this. Thank you for sharing your sons experience. It’s a tough illlness and when it hits hard, it’s extremely difficult. I remember senior year of high school being one of the worst times in my life. Being so new to UC and not knowing how to handle it. It sounds like he is doing better know, I’m happy to hear that. It takes many many attempts to figure out what works for each and everyone of us. This is my third flare since being diagnosed about 6 years ago. My bad habits creep back in and things slowly go south quickly. I will be extra motivatated to make this the last harsh flare. Thank you for your time.

      Best,

      • Maddy March 18, 2019 at 5:15 pm #

        Shakes: I have used Absorb-Plus from Listen to Your Gut for weeks and weeks at a time to spare my gut from trying to diet food. Also have used Mediclear, a pea protein powder. I add a banana, avocado, etc. to vary and mixed with Califia “milk” products. Good luck!

  17. Adam
    Adam March 17, 2019 at 12:08 pm #

    Matt,
    I’m an idiot for not checking if my post made it, but I messed this up two weeks back. I recorded this video reply fir you two weeks ago.

    Would love an update on how you’re doing too

    https://youtu.be/_-WjbiMXnp8

    • Matt 24
      Matt March 17, 2019 at 6:11 pm #

      Hey Adam,

      Apreciate you reaching out and sharing your thoughts. Luckily, hockey has ended. This gives me more time to myself and less worrying about traveling to away games with the team.(definitely was always a fun experience, praying I don’t have to **** my pants) So far I am seeing some progress, slow, but seems to be getting better. I have anywhere from 2-4 movements a day. I am on 15mg of predisone, 4 tablets of lialda and 1 canasa in the evening. I am weaning off the predisone.( started at 30mg.) I have been on the SCD since the beginning of February, but went to the intro diet towards the middle of February. Right now I am experiencing some light blood most times and gas. I am able to hold food down now which is definitely awesome. There are some days where there are some nice somewhat normal looking stool, but with the light blood and then there are days where it’s loose. Cramping has gone down big time. Everyday has been different. It can be frustrating at times, trying my best to stay calm and trust the process. My girlfriend is awesome with everything and has been with me every step of the way. She is keeping me motivated. I think I am on the back end of this flare, but it’s not where I’d like it to be at this point. After looking at some of your videos, I see that you don’t eat that much (meaning quantity) during a flare. I have a hard time doing that, I always have an appetite. I appreciate all the advice and your website has been incredible for hearing and learning new stories about what works for others that share UC. Thanks again.

      Best,

  18. Lorena March 19, 2019 at 8:30 pm #

    Glad to hear you’re seeing some progress. You will remission I guarantee it! Have you asked your doctor for rowasa enemas in lieu of Canada suppositories? If you have left sided colitis this may help more for the time being. It reaches further up in the colon. Keep fighting!

  19. Matt 24
    Matt March 20, 2019 at 4:41 am #

    Hey Lorena,

    Thank you for reaching out. I think I’m definitely starting to hit the back end of the flare. I have seen very slow progress, but it seems things are looking up. I actually have tried Rowasa before! I think at times it has helped, but it was always so inconvenient and took too much time. This is my first go with the canasa and it has been helpful and easy to use. I think I’m the past I didn’t use the rowasa lomg enough. My normal schedule would be 7 days on, 7 every other. I think maybe it wasn’t long enough when I was flaring. Hopefully, I will never need to use anything more than a lose dose of lialda for the next few years(along with the SCD.) But I can definitely say that treating by means of both ends seems to me more successful. Thank you for your comment and I hope you’re doing well!

    Best,

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