This Too Shall Pass

Jerry A - diagnosed colitis oct 2013

October of 2013 I was diagnosed with UC

Introduction:

Well, hello. I am 18 years old and just started my first year of college. A little more than two months ago (the beginning of September), I became really sick . . . and I didn’t get better. I had a colonoscopy in October and not long after, I was diagnosed with UC. So, I guess you could say I’m brand new to this disease.

Some more about me:

I was born and raised in Utah. I have three siblings and two wonderful parents.

I am a very introverted person, though I’m not socially awkward. Ha ha. I can be sarcastic at times, and I am a HUGE fan of witty, corny puns. I love to laugh, and I love being around people who will laugh alongside me.

I love grape-flavored foods: kool-aid, mike & ikes, laffy taffy, jell-o, jolly ranchers, etc.

Symptoms:

I have to use the bathroom A LOT, and my stools are always loose and bloody. And the smell . . . well, don’t get me started. That alone is enough to put the UC in YUCK! My symptoms have been pretty bad lately. I always feel like I have to throw up and use the bathroom (at the same time). Just the thought of food makes me feel sick, because I know what effects it will have on me in the not-too-distant future. I get stomach cramps, and it seems like there’s nothing that will lessen the pain. Sometimes I wake up in the middle of the night and have to run to the bathroom so I don’t–for lack of a better word–explode (ha, sorry for the image).

This Too Shall Pass

This past Labor Day weekend (2013), I went camping with a friend. The day after I got home, I noticed my stools were bloody, but I wasn’t experiencing any pain whatsoever, and I didn’t feel a frequent urge to “go.” I thought maybe I had gotten a parasite or something from the water I drank while I was camping. I waited for a few days, and when I realized it wasn’t going away, I had to bring up the awkward conversation with my mom.

I was scheduled to see a doctor, and he thought I probably just had a parasite as well. He took a stool test and put me on an antibiotic (flagyl). I had to take flagyl three times each day for ten days, and by day five I wanted to die. That stuff is awful! I didn’t actually feel sick before I started taking flagyl, but while I was taking it, my stomach hurt all the time, and my mouth tasted like battery acid (not that I’ve ever tried battery acid). My doctor gave me nausea tablets to help with it and highly recommended that I stay on flagyl for the full ten days to kill whatever parasite I had.

When the results came back from the stool test, my doctor said that every test for a parasite came back negative, but I had an excessive white blood count, which indicated that I had an infection of some sort. My doctor advised me to wait a week to see if my symptoms got any better. He thought that maybe I’d had a parasite, that the antibiotics killed it off, and that my body was just in the process of healing itself. I was able to stop taking flagyl (hallelujah!), and I immediately felt better, though I still had loose, bloody stools.

A week passed, but my symptoms didn’t. I was scheduled to have a colonoscopy done early in the morning on October 8th. After the colonoscopy, I was told that I most likely had ulcerative colitis, and the earliest I could see a GI specialist was in November. At first I didn’t want to accept it. I had read a little about the disease, and a little was more than enough for me. The more I read, the more depressed I became. For one, this disease is a little embarrassing, and it seemed like the list of foods I couldn’t eat just went on forever! After I read through the list, I thought, “What CAN I eat?!”

I still held onto the small thread of hope that what I had wasn’t actually uclerative colitis. I mean, I wasn’t experiencing any pain, and my bathroom visits were normal. Then the day came when the college I attend offered free flu vaccinations. My parents encourage me to get vaccinated, so I did. I don’t know if the shot had anything to do with this, but about five days after I was vaccinated, I started experiencing major abdominal pains, and I couldn’t eat anything. Even “safe” foods made me feel ridiculously ill. I couldn’t eat or drink anything, so I went back in to see my doctor, and he put me on prednisone for about a week (until I could see the GI specialist).

I started taking three prednisone pills for three days, then two for three days, and then one for three days. At first, prednisone was fantastic. I stomach stopped hurting, I didn’t have to go to the bathroom all the time, I could eat, and I felt happy. Unfortunately, as the dosage lessened (after about four days on prednisone), I started to get sick again.

I went in to see the specialist that next Wednesday (November 6th). I was hungry and malnourished, and when I walked into his office, one of his nurse gave me a huge smile and said, “Hi! How are you today?” Oh, you know, I’m just bleeding out of my butthole, I feel like I’m pregnant with the devil’s child, I practically live in the bathroom, I feel like I’m becoming anorexic (not by choice) . . . ugh. Maybe I’m just being a brat, but that seemed like a really stupid question at the time. I mean, honestly. If I was all peaches and sunshine, I probably wouldn’t be in your office right now!

Anyway, the specialist wasn’t happy to hear that I was taking prednisone, and he gave me some samples of Asacol and Lialda to take home. He acted like my condition wasn’t really that big of a deal and told me to eat whatever I wanted (which is basically the opposite of everything else I’ve read about Ulcerative Colitis), and he told me I should start to feel better in about six months.

I started taking Asacol, but my symptoms only worsened, so after a couple of days, I switched to Lialda. My symptoms started to get better, and I felt hopeful. Unfortunately, though, that didn’t last long. I’ve been on Lialda for almost a week, and I know it’s not actually supposed to start working for about three weeks, but I feel like it’s making my symptoms worse. I dread going to my college classes, because I can’t sit through them for too long before I have to get up and find a bathroom. I get really bad stomach cramps, and I feel like I need to throw up. I still get bloody diarrhea, and I’m having a hard time staying positive.

Sorry this is so long. I guess I just needed to vent.

written by Jerry A.

Submitted in the colitis venting area

55 Responses to “This Too Shall Pass”

  1. AdamNovember 13, 2013 at 5:51 am #

    Jerry,

    Thanks for venting it out. Feel free to do that here all day long.

    I totally disagree with your doctor regarding food. I feel like that GI doctor can’t be more wrong. I’m sure you’ve got lots of college textbooks you’re reading right now, but I’m going to email you the ebooks I’ve written. One is my life story with regards to UC, and another is a complete list with recipes of the foods I eat.

    I’m medication free and symptom free, and again, I can’t disagree more with what your GI said. I’ve got your email, and I’ll send them in a moment to you.

    One outside suggestion I’d make is with regards to C-diff. Due to being on antibiotics recently and in and out of doctor’s offices/hospitals, I’d talk to your GI about getting tested for C-diff. It’s awful to have along with UC, (i’ve been there and done that) but if you can eliminate that from the mix, UC is much easier to get ahold of. (Super small chance of the c-diff, but I’d get tested for it, just takes a poop sample).

    Keep the smile on your face like in your picture, and stay positive. Classes and school will become fun again for you,

    -Adam

    • D'Arcy CooperNovember 19, 2013 at 3:59 am #

      On behalf of the world, thank you so much for making this website Adam. Jerry do not listen to anyone just because they are doctors! Listen to your intuition and do your own research. Seek natural, side effect free alternatives which are not only safe but nutritional and recommended for a healthy person.

      I’m curious Adam, have you tried sauerkraut as a therapy? I tend to believe intestinal flora has huge importance in UC.

  2. AndreaNovember 13, 2013 at 6:27 am #

    I totally disagree with your doc too, I was also told the same! But I know myself when I eat certain things they really make me in complete agony! You will get to know yourself. Especially jalapeños for me and I love them :( I have been on Asacol for 11 years since I was diagnosed and have been ok on that, but when I asked him could I try something else he said no because I haven’t had children yet and other medications have worse side effects and could affect fertility! Good luck Jerry

  3. Graham from England
    graham leeNovember 13, 2013 at 6:36 am #

    Hi Jerry,

    Welcome to the club, you have done yourself a big favour finding your way here!

    There will be some very small improvements that can be learned here as well as some big ones. Unfortunately everyone is different so mainly trial and error but definitely an information overload at times. UC does feel like a curse but there are far worse things to have. It will take time for things to improve but have faith, many here have done all the meds and feel better now they have learned to help themselves. Doctors will say diet and supplements are not important but this simply isn’t true. Drugs may work fast initially but they aren’t a long term plan in my view. They mask the symptoms but do little for prevention or underlying causes.

    The population of your gut bacteria is important, some take probiotics to boost the good, sugar and refined carbs feed the bad (to mention but a few). Alcohol is a big problem for almost everyone with UC, this should be limited if you can’t refrain altogether. Some have food allergies though these are not easy to pin point. Reducing stress seems to reduce flares and a good night’s sleep aids recovery for sure. Research I have read says processed meats/excess red meat causes flares and is linked with poor bowel health. It is also digested slowly and keeping things moving is very important for me at least. My flares start with bloating and everything grinding to a halt before the inevitable multi BM’s a day start.

    Some of these are simplistic descriptions that need further investigation by you but all these small percentages add up.

    Like others here, over the years I’ve managed to control my UC by smoking but this is a last resort. I am confident that I’m close to fine tuning my program so I no longer need to resort to this dangerous option.

    I swear by 3 table spoons of a half decent extra virgin olive oil per day. My Evoo post is easily found here so maybe worth a read.

    Best of luck!

  4. Polly
    PollyNovember 13, 2013 at 7:30 am #

    Hello Jerry!

    I am so sorry to read about your current troubles, however, thanks for the laugh this morning… “oh you know… pregnant with the devil’s child…”
    Congratulations on having a great attitude and also on doing research and reading up on UC… you are on the way to finding out that YOU are the expert on YOU and not some GI… by the way, my GI also told me (while laughing) to eat whatever I want and that diet has nothing to do with it and acted like UC is no big deal.

    There are lots of diets out there… anti-inflammatory, gluten free, Paleo, SCD, GAPS… many of us here on ihaveuc are following one of these or a combination… I would highly recommend cutting out gluten and processed foods (sorry… your grape flavored candies probably aren’t the best for you), start taking lots of quality probiotics (i.e. if you see a commercial for it on TV, it’s not quality), get on Vitamin D, and take some turmeric pills to get your inflammation down. I would recommend seeing a naturopath if you can, or an herbalist, holistic chiropractor, functional medicine physician, etc… someone who focuses on helping treat the CAUSE and not just mask the symptoms! Having UC is not cheap… but it will be OK and things will get better!

    Hugs from Minnesota!
    Let me know if you have any questions.
    Hang in there,
    Polly

  5. ZachNovember 13, 2013 at 12:56 pm #

    Hey Jerry, I am in my first year of college as well and I have had UC for 5 years, I’m gluten free and dairy free but I think everyone has to find their own niche of remedies that help them daily. Sadly there is no silver bullet to fix anyone’s problems. For me it is all about have a rhythm everyday. Going to class and knowing where the bathrooms are, knowing where you can eat, and always having a back up plan just incase things take a turn for the worse. I know I am definitely not in the best health I have been in and one of these days I really do need to write my own little story for this site. But if you ever need to vent to another college student I’m here!

  6. Trisha
    TrishaNovember 13, 2013 at 2:12 pm #

    Jerry,
    Sorry to hear of your diagnosis but it is not the end of the world although it feels pretty poopy when you have a bout of UC. I have been diagnosed with UC for 14 years now have not had one surgery and been able to keep in remission for long periods of time. First thing I would do is get another doctor if he tells you diet does not matter! It totally matters and the “can” and “can not’s” vary person to person and as your body changes in life.
    I also question the meds as one week is not long enough to tell really. For me Asacol has really worked and I have gone from 9 pills a day down to 2. In time I believe I may be off of the meds all together. (I use a Canadian pharmacy my doctor encouraged me to try to cut the cost to 1/3rd) It is very realistic and since you have recently been diagnosed I believe you can one day (sooner than later) be drug free. As for my rare outbreaks I have found the Prednisone works but it’s 5 for 5 days, 4 for five days, three for five, etc. My doctor also encourages natural/holistic items such as Probiotics, Aloe Juice, etc. Again, I suggest a doctor that encourages this as well as changes in diet. I have found suggestions on this site that have really changed my condition and my doctor has always encouraged me.
    You have really landed on a great site. I know I can express myself without being embarrassed and love the sense of humor we all bring to the each other. I have a normal life aside from the occasional flare -up which I have learned to work through with rest, soft foods and a med that will stop the cramps and numb the gut so I can actually get through work. Don’t have the name with me but what a huge help.
    Keep smiling, looking for natural aids, seek support when you need it and by all means find a doctor that really knows UC.

  7. PeterNZNovember 13, 2013 at 2:12 pm #

    Hi Jezza,
    Just thought I’d say that UC runs in my family; half of us kids have it. Now my brother got crook as with it and he took Pentasa and it went away. He always kept to his normal diet of eating anything he felt like. He stopped taking the Pentasa and it never came back. Lucky him.
    Anyway, maybe diet has nothing to do with it for some people and maybe you are one of the lucky ones?
    Cheers

  8. bevNovember 13, 2013 at 2:37 pm #

    Hi Jerry…are you serious about the flu shot? I have been in remission for two years on a good probiotic and L-glutamine, but just over a week ago, I decided to try and get the flu shot again this year (I skipped last year thinking that perhaps it was contributing to my ‘winter’ flares that I always tend to get). Well, lo and behold…I am having signs of UC once again…DAMMIT!! I thought all would be fine if I got the vaccine, but I guess not.

    I am advising everyone now…it affected me! I can’t believe it but it did and am I ever pissed at myself. I should have left well enough alone. Last year I skipped the glu shot and was fine…will I ever learn not to change ANYTHING if everything is going well????

    Cheers, y’all…and you too Jerry…I feel for you girl!!

    Bev

    • Joan H
      Joan HNovember 13, 2013 at 6:26 pm #

      Bev! That stinks! About the flu shot for you! I haven’t gotten the flu shot either because I’m allergic to eggs and latex and so it’s contraindicated. But then this year everyone at work was supposed to be vaccinated or essentially not be able to work – I still am not going to have the shot because of the allergie, but I was thinking too, that with the autoimmune thing that UC is, maybe a flu shot would make matters worse instead of better — I’m so sorry you don’t feel well because of it. I think you’re right -the flu shot has to be thought about by those of us with UC, and we need to weigh the risk vs benefit. Hand washing and covering when you sneeze and cough have always been the best way to prevent spread of the flu and other illnesses. I really hope you feel better very soon – you have helped all of us with all your wisdom and kindness, and I bet i’m not the only one on this site that’s upset for you that you’re not feeling well. Hang in there Bev!!!

      • BevNovember 13, 2013 at 6:40 pm #

        Oh Joan …how sweet you are!

        I am so not impressed with flu shots at the moment. Once again I will double up on the probiotics and hope like heck it corrects things. Thank you for being you Joan!

        ❤️

        • Joan H
          Joan HNovember 13, 2013 at 6:46 pm #

          Bev – you are such a special person and such an inspiration. Seriously, you don’t know how many times your words got me through a really tough time – Blessings and feel better!!! (Good idea about the probiotics too!) :)

          • bevNovember 13, 2013 at 10:53 pm #

            From the bottom of my heart, thank you Joan. I appreciate the kind words…especially right now!!

            :)

      • shelly in maineNovember 23, 2013 at 6:59 am #

        Hi Joan…I am so sorry you are struggling so much right now. I just went back to your newest story…I never had rechecked (been quite occupied with our health issues here!)and didn’t get notice of a reply..so sorry. You are too sweet. We are all in this together.
        How are your tests coming back with the liver, etc. ? I can’t remember if you are allergic to avacados,olive oil, or any other healthy fats? (Add after, too so you could add extra good fats and calories and not change the health benefits of the natural oil…like Graham has posted) Are you still able to keep exercising…remember any tiny amounts will help…and smaller multiple meals. I find the lglut helps only to a degree. I am going to “play” around with that next and a few other things.
        I guess this is al nothing new, but Hope!! Hahaha and encouragement nd reminders to keep trying things even some of the old things since our bodies are ever changing.
        Thanks for your thoughts and support and well wishes and right back at ya!
        And you, too Bev. Shelly. :-)

        • bevNovember 23, 2013 at 8:22 am #

          Thanks Shel:)

    • shelly in maineNovember 15, 2013 at 4:12 pm #

      hey Bev,
      I just went some site and read many people had abdominal cramps and diarreah from this year’s flu shot…crazy. I think maybe because they included more in it this year. I did not have issues last year and waited for my doctor to say it was effective before I got it.
      Still up in the air for this year’s as I wrote below.
      Healthy thoughts, Shelly

      • bevNovember 15, 2013 at 6:38 pm #

        Oh my! Really Shelly?! That’s exactly what happened ( and is still happening) to me. Especially the cramps. I was getting so worried, that I was going to break down and see my (ugh) doctor. The cramping has subsided, but the shot really aggravated the old UC.

        Thank you for that. You always wonder if it’s the shot or not, and it’s great to have some concrete validation!

        Bev
        :)

        • shelly in maineNovember 21, 2013 at 5:39 pm #

          Bev,
          How are you? Have things settled back down for you?
          I don’t think you should have regrets….keep looking forward. I think weird things happen in the fall and spring and our bodies go haywire whether or not we have diagnosed allergies or not. I think we are extra susceptable to those things. If you hold the immune based theory of UC to any degree it makes perfect sense that our bodies overreact to everything and go haywire and confused on what it is supposed to fight. (Like the weird double ear sinus infection i got for no apparent reason…i think it was allergy related even though i dn’t have allergies per se.)That in theory is why the tnf blocker can help sme people.
          Anyway, hopefully your system has settled down.
          No time for regrets…healthy thoughts.
          Best, Shelly. :-)

          • bevNovember 21, 2013 at 5:47 pm #

            Hey Shel!!

            I am almost 100% again. Thank you so much for asking. I think I got an immune response from this years’ flu shot. I can attribute the mini flare to nothing else.

            I plan on keeping doubling up on the probiotic for a full month. Last time, when I had that other mini flare, (when I tried to change from one probiotic to another), it took three weeks of doubling up on them to get 100% better.

            How are you these days?

          • Joan H
            Joan HNovember 21, 2013 at 6:11 pm #

            Hi Shelly and Bev – Bev congratulations and I’m so thankful to hear you are feeling better! That’s great news! Probiotics really work – I can’t believe how true that has been in my life over the last few months. And I’m so glad that you, Probiotics Queen, have been able to double up and reap the benefits!
            I was just talking to my doctor about the possibility of TNF’s for the bone pain I’ve been having. So it was interesting when you brought that up, Shelly. I’m starting with a nutritionist first, who is recommending for me that I try some liquid nutrition to supplement my rice and chicken diet :) So we’ll see. My doctor knows I’m very hesitant to try any new meds, and I want to give nutrition a good try first. Maybe as my gut heals even more, my bones will stop hurting. Anyway, it was good to see the both of you back and hear you’re doing so well again Bev! – Joan

          • bevNovember 21, 2013 at 6:14 pm #

            Thank you Joan…I’m getting there!!

            Thank goodness for probiotics, you said it! I don’t know where I’d be without them.

        • shelly in maineNovember 21, 2013 at 7:32 pm #

          Hi Bev and Joan..
          First Bev, keep your fingers crossed on just the mini flare and that hopefully it will pay off, but hopefully the flu won’t be an issue. So keep up the probiotics…to 100 + % UC over achievers!

          And Joan, good luck with the added nutrition…research them carefully…lots of extra ingredients ina lot of those things. I use the Spirutein, but i know others wo can’t tolerate it but was recommended buy anauthor…Tracie Delessandro MS,RD,CDN who is also a patient and she also talks about fish oil and probiotics, well before her time,which I hopped on many years ago. I basically follow SCD with some added gluten free organic oats and rice pasta. So just be careful of even some of the recommended things..lots of unnecessary extras. So good luck. I didn’t disappear…still read most all stories and comments from us regulars/oldies of the site!

          As for me…still hanging in there…flare is still hanging in there from the whole ear/sinus infection fiasco In July and extra stress, but i am managing to go to work and make it through and have my smoothie at lunch…so that is always good. Flare is still quite active, but I’m managing and that’s all I need despite still bleeding, d/loose stools10-15 x, but here is the best part…my blood work actually came back mostly in the normal range…HA..interesting, huh? I can’t say it’s the best quality of life, but i usually guage by whether or not I can work and also if i can still have my smoothie at work…so thanks for asking. I guess we UC’ers really do redefine “normal” huh? My Dad always used to joke how good we looked for sick people..another curse and gift of UC! :-)
          Best, as always, Shelly

          • Joan H
            Joan HNovember 22, 2013 at 8:29 pm #

            Hi Shelly – That is so true about UCers – we are tough people. People really don’t know how hard it is to live with UC a lot of them time – we just keep going and doing and hanging in there! Although I agree with Adam to share more with people so they’ll know what UC is really like (to a degree anyway) and for support along the way, and honest communication. Today was a tough, draining day, and people at work were going out bowling afterwards and invited me. I knew I didn’t have the energy to do it, although I wanted to be with them. One of the people there who realizes I’ve been unable to eat lately again, and am starting a supplement soon for the liquid nutrition gave me a big hug, told me we’d get together when I felt better and to hang in there. It helped to know she cared and also that she knew I wasn’t staying home because I just didn’t feel like being with people. UC can get isolating if you don’t let people in on it sometimes. Thanks for the advice about the nutrition supplements – yeah – I have so many food allergies (autoimmunity – ughhh!) that it’s easier for me to tell you what I’m NOT allergic to than what I am! I looked at the spirutein and know I couldn’t tolerate it yet just because of the number and type of ingredients, but hopefully as my gut heals I’ll be able to tolerate more. I ordered the Vivonex on a small quantity, very expensive stuff – but it’s like lately I can feel my muscles wasting away, and have lost a bit of weight and definitely energy. So I’m hoping it will help with that. I will try it in very small amounts and have my epi pen ready just in case. But I hope I can get my gut into some kind of healing state where it will start receiving solid food nutrients again, bit by bit. So we’ll all hang in there and support each other and I hope you’re starting to settle out after all you’ve been through the last few months too – yu’re a treasure – thanks for being there! Joan

      • AdamNovember 16, 2013 at 6:13 am #

        Interesting for sure Shelly about this years F Shot. Survey on the way, was working with Bev on it yesterday, and looking like Monday or Tuesday it will get out then 4-5 days after with results borrowing any unforseen internet connection developments.

        way interesting though either way about side effects from this years shot. thx for sharing that, -Adam

        • bevNovember 16, 2013 at 8:49 am #

          Can’t wait for the survey, It has the potential to reveal a lot of information and help us decide what we are going to do, now and in the future, about the flu shot for ourselves

          I think some of the crap that’s in the serum can seriously mess with a UCer’s colon. Just my opinion since our colons are already compromised and my experience with it this year.

          I always thought it was the colder weather that was causing my flares every October or November, but now I’m thinking it might have been about the flu vaccine…what a drag, huh??

          • Joan H
            Joan HNovember 16, 2013 at 1:40 pm #

            Hey all – I think the reason the flu shot affectes UCers is because we have an autoimmune disease – we are already compromised to a degree. So anything “foreign” – whether its a new food, an injection, new med – our body over reacts to. Normally, the body is supposed to recognize an “intruder” or antigen, and fight it as part of our natural immune response. The autoimmune response for UC is much more sensitive and reactive to foreign substances. The body would normally develop an immune response to the flu by receiving a weakened or attenuated flu vaccine, and then when the flu virus presents itself to us, we would already have reacted to the flu virus in its weakened form that had been injected. In our case, we “over respond”- for me, I also “over respond” and fight new foods…not everyone will react to the flu shot in that way, but the immunology makes sense. So we have to weigh the risks vs benefits for each individual. The survey is going to be really interesting to see – Thanks Bev and Adam

          • bevNovember 16, 2013 at 2:34 pm #

            Very good insight Joan. That sounds totally plausible and probably spot on!

            I thought that the flu shot was recommended for we ‘compromised’ sorts, but I don’t think so anymore!

            Besides, there is all kinds of info right now in the media, regarding cold and flu season, that good gut health (probiotics) is your best and should be your first defense against these viruses! Along with good old hand washing, of course. Who knew?!

          • Joe H
            JoeNovember 17, 2013 at 6:58 pm #

            Hey, Bev, I’ve got to check on when I got last years flu shot. I get one every year, because of my heart condition and age. Last year was my first flare and it came around the time I usually get a shot, Oct/Nov. They tried mesalamine drugs first, pills & enemas. When that didn’t work, they started me on prednisone in Dec of 2012. I started with 40 gr for 2 wks. after 8 weeks I was off that and was clear of symptoms for over 4 months, but did not take any other medications or watch what I ate. By September I was in a bad flare, so they started the mesalamine again and of course it did not work, so back on the prednisone. I’ve got about 3 more weeks on that, but I had this years flu shot the first week of Nov, so I’m thinking as soon as I’m done with the steroid treatment, I may be visited by another flare or I may have dodged a bullet because I was on the prednisone.
            You suggested I try L-Glutamine, I want to get some. Where is the best place to get it, what form does it come in and what is the cost. The cost of treating this UC is killing my limited budget, just living off SS right now since I lost my job last year, because of this condition.
            Joe

          • bevNovember 17, 2013 at 10:41 pm #

            Hi Joe,

            Yes, I do recommend L-glutamine, but also a good probiotic as well.

            The L-glutamine I use is called NORTH COAST NATURALS FERMENTED UNFLAVORED POWDERED. I buy it at the vitamin/supplement store.

            Cheers

          • Fred S
            Fred SNovember 18, 2013 at 2:38 am #

            Joe…my two cents on L-Glutamine. While it works with some people, other folks reported getting headaches while taking it. I am one of those people who gets a headache so had to discontinue use. Please keep in mind that not every medication or supplement works for everyone. You might never have a problem with L-Glutamine and see great results however I wouldn’t want to see you get a nasty headache and think it something else. That’s part of the whole trial and error thing with us UC’ers.

          • bevNovember 18, 2013 at 6:53 am #

            Really Fred? I’ve never heard that…I wwas having headaches every day a couple months back, but I went back to taking a higher dose of liquid Iron Smart, and they are gone now…good thing I didn’t read your post then. I may have thought it was the L-glutamine and stopped taking it! I guess you have to try the L-glutamine and see.

            For me, the headaches were because I was anemic again…

  9. bevNovember 13, 2013 at 2:41 pm #

    BTW, asacol and lialda were like the kiss of death for me as well. I obviously was either allergic or my body seriously did not like mesalamine drugs. Now, I refure to treat UC with any meds at all. I am the rebel when it comes to prescription drugs!

    I only treat and manage it with a good probiotic, L-glutamine, astaxanthin and vitamin D.

    Cheers

  10. bevNovember 13, 2013 at 2:42 pm #

    refuse…not refure…sorry

  11. Kyle Thomas
    Kyle ThomasNovember 13, 2013 at 4:35 pm #

    Hey Jerry,

    I just wanted you to know I read your story and have a great deal of empathy for you. I’m in college too and dealing with the awful disease, however I’ve had my colon removed. It helps a lot to keep a positive attitude! If you have any questions or wanna chat about dealing with UC in the college atmosphere feel free to shoot me an email at kyle_thomas1992@yahoo.com

  12. Joan H
    Joan HNovember 13, 2013 at 6:43 pm #

    Hi Jerry – I’m sorry you feel so bad right now, but welcome to the site and really, stay in touch and check in often, and you’ll get lots of tips, help and support from those of us working through Ulcerative Colitis. This site is awesome! One thing I was going to suggest is that you try probiotics. I started during a bad “flare” of UC when I thought there was no hope left and all I could do was go from the bathroom to the couch or bed with a hot water bottle – my life was consumed with UC — out of control UC. I was taking lialda at the time, two tabs two times a day, nexium, glycopyrrolate, canasa suppositories, had just finished prednisone…you get the picture…lots of meds and still having horrible symptoms. I started the probiotics at 10 billion count (one capsule) per day. A week later i went up to 20 billion, and now have settled at 30 billion count per day. I recommend Renew Life Probiotics because they are made to have the “good” gut bacteria released in your intestine. Other probitotics can have many strains of probiotic (thermophillus, acidophillus, etc) but these capsules break down in your stomach (not your intestine). If they break down in your stomach, your stomach acid eats up the bacteria and it never gets to the place it’s needed – your intestine. Renew Life 30 Billion can be purchased at Amazon (there is a link on Adam’s site to the Amazon products if you like). This actually decreased my symptoms to NO pain within two to three days, no bleeding – it just stopped, just like that. I have been primarily pain free, and totally blood free, with only a stool a day, for four months now. The other thing the probiotics did for me was allowed me to decrease my medications over time – I now ONLY take nexium in the morning, and one canasa suppository at night. Dramatic decrease – again, over time because you want to let your body gradually adjust. Some people on this site have been able to be totally medicines free, some with “some medicine”, some still on multiple meds. The nice thing about this site is it’s so open and helpful to everyone, and everyone recognizes that each of our roads is different. So you may be able to be off of meds one of these days – but I would definitely take it slowly and see how your body adjusts along the way. The other thing I did was simplify my diet to just rice and chicken – I cut out all the caffeine, wheat, milk, sodas, sweets – it seems drastic, but it was worth the pain going away, and I’m increasing foods as best as I can as I go along. Olive oil instead of butter – and keep checking in – we all want to know how you’re doing and support you – All the best, Joan

    • KarenNovember 13, 2013 at 10:17 pm #

      Wow, lots of great suggestions. I’ve had UC for 8 years and have tried just about everything. I too was diagnosed while in College. Best thing to do is share what you are going through with your close friends at school. I was in nursing school so it was easy to share with my instructors because they knew about the disease.
      Some suggestions…take a calcium supplement, vit D, folic acid and some sort of fish oil. Liquid vitamins are the best as they will be absorbed better.
      As I was starting to heal up from my last flare up about a month ago I saw a dietitian that specializes in IBD. She suggested a Low FODMAP diet.for 6 weeks then slowly add more foods in after. While adding the new foods in keep a diary so you can see how they are making you feel. To be honest, I’ve never felt better. I am eating foods that I thought were a trigger with no problems and learned some foods I ate everyday can be very difficult to digest. This diet is mainly for IBS but many with UC have had great success.
      I wish you well…I know it seems hard now while you are sick but life will return to normal. Always a few ups and downs a long the way but take advantage of the good times and live life to the fullest.

      Karen

  13. SherNovember 13, 2013 at 8:16 pm #

    For those of you that are mentioning the flu shot, please read the following link! If unable, google 5 reasons to never get a flu shot. It made me never want to get one again, UC or not! Scary stuff!

    http://usahitman.com/frwngafs/

    • Polly
      PollyNovember 15, 2013 at 12:08 pm #

      Sher, thank you for the info!!!

  14. Fred S
    Fred SNovember 14, 2013 at 2:42 am #

    Most doctors don’t understand UC at all. I am like Bev and refuse to take any drugs they offer. Diet is the key. For me, gluten and dairy are the enemy. After eliminating those entirely, the bleeding stopped. Limiting red meat and pork helped to keep things moving along as well. Good probiotics, olive oil and vitamin D are a must. The rest is of my diet has been trial and error. Some foods and supplements are fine with me but others report having problems with them. I suspect the same is true for medications based on folks comments here.

    Speaking of medications, I was thinking of getting a flu shot (for the first time) but wondered if it was going to cause a problem with the UC. Nope, won’t be doing that ever. (fyi: probiotics already offer great cold and flu protection and help with the UC so why chance a flare) Thanks Jerry and Bev for sharing your experiences.

    Hang in there Jerry, things will get better. :-)

    • bevNovember 14, 2013 at 7:52 am #

      Thank you, Fred. I agree with you completely as well.

      I am of the mind now, that probiotics are a great defense in preventing viruses like the flu. I have seen and read research on that and, just like I will not take meds for UC, I now vow to also never get that flu shot again!

      :)

  15. Jerry A
    JerryNovember 14, 2013 at 4:22 pm #

    Wow! Thanks for all of your comments, advice, and support! You have all been very helpful. I am actually doing much better. I have changed my diet (cut out dairy), and I think my UC symptoms are starting to calm down a lot. I don’t know nearly as much about UC as you do, but it’s really nice to discuss these problems with people who completely understand. I’m going in to see my GI doctor again on the 27th, so hopefully things will go over better this next time. This website and everyone’s input have been great. Thanks again!

  16. bevNovember 15, 2013 at 8:38 am #

    Ain’t that the truth Jerry?? I don’t know where I’d be without all of the wonderful people and support on Adam’s site (Adam too)! It just keeps you going when the going gets tough!!

    ;0

    • AdamNovember 15, 2013 at 10:53 am #

      Bev Bev Bev,

      And you know this site would be incredibly lame if it wasn’t for all your support of everyone here, no matter which country they come from or which doctor they see!(Way cool of you the world over). I wish you both the best, and Bev, I’m sorry to hear about what be a going down post flu shot. I’m going to send you an email with some questions about a future survey on the topic.

      Jerry, keep the smile on:) Everyone loves a nice smile and you got a great one!~

      -Adam

      • shelly in maineNovember 15, 2013 at 4:04 pm #

        Hi. Adam and Bev…i was just thinking about emailing about a survey on the flu shot.

        I have been sitting on the fence still and trying to figure out whether or not or how effective it is this year. You know I work in the mecca/petri dish…school and spend a lot of time n kindergarten.

        I’m still battling, but just had decent blood work done…that another interesting subject of discussion??

        Best, Shelly

  17. bevNovember 15, 2013 at 11:36 am #

    True that Adam! Smile!!

    We’re all in this together, to coin a cliché…lol

    Cheers, and thank you for the note…I’m getting there…it usually takes a few weeks on double probiotics to ‘heal’ thyself…myself :)

  18. Nadia ENovember 18, 2013 at 10:21 am #

    Hey Everyone,
    Just reading through the comments here and wanted to put out there a natural “remedy” that my holistic doctor recently put me on, after two major flares involving the ER and morphine. He gave me cloves to take in supplement form, and I have to say, I don’t have that bloated, inflamed, horrible feeling that I had prior to the flares, as well as during. He told me that cloves reduce inflammation. I’m also happy to report that my joints don’t hurt as much as they did either.

    As always, check with whichever medical person/nutritionist you are seeing, but if it has helped me, maybe it will help someone else.

    Jerry, hang in there. Slowly but surely it will get better, and you have come to the right site because everyone here can sympathize, but more importantly, EMPATHIZE.

    • Joan H
      Joan HNovember 23, 2013 at 10:05 am #

      Hi Nadia-Can you tell me more about the cloves? What brand (if there is one), what strength or dose, any side effects? This bone and muscle pain is really getting to me, and for some reason the UC is on its way back up in intensity :( Thanks – Joan

  19. MJH
    ManonNovember 18, 2013 at 10:22 am #

    Hello Jerry A.

    As everyone is saying good nutrition has a HUGE impact on your flares! Over time you will learn the do’s and don’t. Adam’s book helped me a whole lot. I went gradual though. Cut all bread, potatoes, pasta, rice as well as sugar and ANY kind of processed foods. If its in a package its usually processed. After a couple days to 2 weeks you should see some changes. Then once a week try Gluten Free pasta. Since you detoxed your body you will know right away if you can take it. I have been diagnosed in 2010 with UC. Following this diet has allowed my family to live a somewhat normal life as well as the use of the first floor bathroom which was assigned to ME up until the last few months! I have started to eat gluten free pasta about 3 times a week seldom to I eat bread because yeast cause me to have flares but on occasion I do but always the gluten free type. Potatoes have a big impact on my digestive system so I stay away from them but sweet potatoes are fine. I have replaced salt for sea salt, sugar to biological sugar, cooking oil and Pam to Olive oil and any spices to fresh. There is nearly no processed food in my house. And I am the mother of a 10 year old who, by seeing her mother so sick to back to healthy with good food, now understand the consequences of what you eat. Her and Daddy have their sweet treats and mommy sometimes cheat but when she is home only.
    My GI didnt believe food had an impact. At a recent visit I informed them of the result but they went “muh” :) I dont care cause I know it is good for me.
    SO go ahead and try the diet if you believe in it and see for yourself. Only you can make the change and see if you get positive results.
    Be safe!

  20. Sarah
    SarahNovember 18, 2013 at 10:48 am #

    Hey Jerry,

    First let me just start by saying I feel ya and completely understand what you are going through (like everyone on this website). I was diagnosed halfway between my senior year of highschool, so I was/am lucky enough to have UC throughout my college years…which can be extremely difficult. (Currently in my senior year at school).

    I had been on all the medications you can think of (prednisone, asacol, 6-MP, remicade) and nothing worked for me. The best advice I can give you is to stick to a diet that works for you, because ever since I did that, I have felt better. I definitely am no where near being healed, but it has helped me gain some control over my life again. (Believe me, the running to the bathroom during classes was the worst…still happens sometimes, but has definitely lessened). I stopped all medications and followed the SCD for awhile, except eliminated all dairy as well. At first it seems overwhelming…you feel like you can’t eat anything. But after awhile, it becomes easier and easier.

    Idk if this helped at all, but it was always helped me hearing from others who knew what I was going through….allowed me to realize that I am not alone in this, regardless of how embarrassed or angry or sad I may get because of this disease.

    Try and stay positive and I wish you all the best!

    Sarah

  21. KevinNovember 18, 2013 at 12:03 pm #

    Hi Jerry,

    I am also in your boat as we all were in the beginning, I was just diagnosed in August just before my 39th birthday, a year after quitting smoking. I just wanted to say everyone is right it does get better, just takes some time, to find what works for you. I tried Lialda, way too EXPENSIVE, for a month, followed by Prednisone, and now Apriso. With diet changes (Fried Food is the enemy for me), including Larch tea, apple cider vinegar and the Apriso, I think I am almost in remission, I sure HOPE so. After reading Bev’s and others thoughts on L-Glutamine and Probiotics, I am going to add that to my regiment as well. By the way any thoughts I had on getting a Flu shot are out the window – thanks everyone for your thoughts. Jerry, keep your chin up and hang in there you are not alone.

  22. Mr SNovember 19, 2013 at 2:09 am #

    I have had UC for 5 years.This year my 6th year something strange happened.Normal stools?I don’t know if it was the medication (“Salazopyrin” from using Colozide (hopeless)) or my change in diet “Paleo-Autoimmune diet-similar to Specific Carb diet or whether the Colitis turning into arthritis (which I have had all this year and believe me it is worse than colitis!). Unfortunately Arthritis (Left foot and left ring ringer) has become so incapacitating that I had to bite the bullet and start on Methexotrate which I never did with colitis.
    PS.Try to do a IGg food sensitivity test (I had sensitivity to egg white,milk and brewers yeast! which has been taken care off due to diet).
    I also found too much sunlight exposure made matters worse!(I take Vit D supplements instead!)
    My UC has been a good boy this year but don’t forget arthritis it can be associated with UC too. So try to get it under control as quick as possible and I would suggest find out food sensitivities first then a diet!

  23. Ann SmithNovember 19, 2013 at 4:53 pm #

    Wow! Welcome to the site Jerry! You’ll get so much support & good information. I have the UC pretty well under control. I tried numerous drugs, with Lialda giving big time poops, no control & Asacol nearly shutting my esophogus down. The end results of all the various drugs I used were far worse than the UC itself. I am now using Sulfasalazine, which is one of the original drugs usedd to treat UC. It works just fine, thank you very much.

    My experience has been, no gluten, no processed foods. I am staying away from soy as it seems to affect me a little. Sugar – oh boy, I have this ice cream problem! I don’t seem to have an issue with dairy but I stick to lactose free milk. I had Greek yogurt yesterdy for the 1st time & it seemed to be OK. I watch myself very very closly.

    Like you, my MD didn’t give any encouragement, acted like, “yeah, well – it’s just mild to moderate UC”, told me to eat whatever I wanted. Was he wrong! It’s been trial & error. About a year into the diagnosis, I began experiencing hypothyroidism. I didn’t know what that was. All I knew was I wanted to sleep all the time. I had adrenal fatigue tests. My primary care MD ultimately prescribed something for it. But I got to do some research & demaned the drug I wanted. I got it. You just have to be informed and prepared for anything. Most MDs do not want to talk to me. I’m a “problem child” because I self advocate. You’ll learn. Go get ‘em girl! Best to you :-)
    ann smith

  24. ChrisNovember 25, 2013 at 7:58 am #

    Hi Jerry, thank you for the smile, I loved your “pregnant with the devil’s child” comment. I hope you don’t mind if I use this the next time I’m trying to explain my situation.

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