Feeling Hopeless and Confused!

New England Colitis JustinIntroduction:

I am a 30 year old male from Rhode Island, who was diagnosed via colonoscopy on May 16, 2013.  I am pretty sure that I have had a form of UC/IBS/IBD for my entire life as there have always been issues with the downstairs. Pretty much like Adam’s book, I was convinced it was just normal for me to go to the bathroom as frequent as I was and that it was just a fast metabolism, never had blood until my 30th birthday in April.

I am a very active once energetic individual. But this UC is taking its toll on me, lost 19 pounds in a month.
My doctor is Eric Newton at University GI here in RI and I have recently contacted Massachusetts General Hospital for IBD Center (http://www.massgeneral.org/csibd/) and awaiting a call back to head to Boston to see what they have to offer.

Some more about me:

Some fun facts about myself, I am a pretty active fun guy! A computer Engineer by day and personal trainer by night! I have completed a Tough Mudder (12 mile obstacle course) ran 2 5K obstacle courses, avid mountain biker/skier, enjoy camping with my girlfriend and luckily I love to cook! Seems it’s a pre requisite if you have UC!

Living in New England has its advantages/disadvantages, a lot of outdoor activities but the weather isn’t always the best!


Currently I am on 40 mg of Prednisone (2.5 weeks), 4 Lialda /day and an omeprazole all taken first thing in the morning.
I have about 2-5 BM’s a day mornings and late nights are the worst usually no blood but recently been seeing some drops of blood during the early morning BM.

My main question is with pancolitis and the amount of prednisone/lialda shouldn’t I have some sort of formed BM? I feel a whole lot better now that I’m on the steroids but not seeing formed BM’s has me worried that my colon isn’t working or has forgot how to work!

Feeling Hopeless & Confused!

Since my colonoscopy in May, I was experiencing some bloody BM’s and pretty bad bloating/cramping, went to my Dr and he was pretty sure it was just internal hemorrhoids as I was to healthy and active to have anything else! Took a stomach bug antibiotic to rule any parasites living in my GUT and GI track. After my situation didn’t improve it was time to go see a GI doctor.

Dr. Newton was very straight forward, said its either IBS –D or a form of colitis. Scheduled my colonoscopy and received the bad news of UC pancolitis when I woke up!

Started on Lialda 4 pills a day and when nothing improved added in Uceris. The Uceris did nothing for my symptoms either ( took for 2 weeks) at this point is when I have lost about 19 pounds weighted only 161lbs at 5 foot 9. Dr prescribed 40mg of Prednisone a day. I have been on the prednisone with Lialda for 2.5 weeks now with some signs of improvement but still not a solid BM. My diet is getting better, just not really sure what I should be doing!

Do I go the SCD route, although I followed Adam’s book and I didn’t have a formed BM from the intro diet (broiled chicken, hamburgh, eggs) is that all I am suppose to eat for every meal? What are you suppose to snack on during the day?

I have been browising a site called http://www.againstallgrain.com/ and the recipes are amazing, just not sure if i should be eating them as i haven’t seen a formed/solid BM since May.

I would really appreciated if someone/anyone would say Justin can you just eat only this for 2 weeks and then eat this and add in some of this you will start to feel better!

Is it safe to take a probiotic ( Ultimate Flora 50 Billion) with a Mens health multi-vitamin and Omega 3-6-9 ontop of the pancolitis?

I’m looking for any advice you guys may have!


started Lialda 4 pills a day right after colonoscopy
started 1 omeprazole before breakfast everyday right after colonoscopy
tried Uceris for 2 weeks with no improvements
currently taking 40mg of prednisone (2.5 weeks) and seeing some improvements

written by Justin J

submitted in the colitis venting area

24 thoughts on “Feeling Hopeless and Confused!”

  1. Hi Justin, I’m also from New England (Mass) and i think i have a recommendation for u to bring up with your Dr…….PROBIIOTICS. See if they agree and give them a try….u may notice a BIG difference!!!!
    All my best, Sarah :)

  2. Hi Justin,

    Thank you so much for sharing your story. I’m not sure if you’ve heard back from Boston, and if so, if they have shared a new battle plan for you, but there’s a couple things I’d like to share.

    First thing would be to get yourself tested for C-diff if you have not already (or very recently). Reason being, C-diff is rare, but its not uncommon for people with UC to also develop C-diff. It’s a simple stool sample test that can be performed, and since it sounds like you’re going in and out of the medical/doc office environment, it should be a simple order from one of your GI’s. Again, C-diff is RARE, but you for sure wouldn’t be the first who is fighting UC as well as C-diff at the same time. I talked about my exact experience with this in my ebooks you’ve read, and yeah, it for sure sucked a fatty, but once that was taken care of, I finally had a fighting chance. (OK, enough on c-diff, and if you’re already tested for that, GOOD JOB!)

    Second, do you like your doctor? If yes, fantastic. If no, OK, not the end of the world, you seem to be very resourceful (which is also awesome) so find yourself one that you like better. There’s quite a bit of resources on this site alone about finding doctors, I just checked and there are THREE GI doctors in the Boston area that other UC’ers have reviewed. You can check those out here if you like:

    Third, and this has to do with diet. Unfortunately, there is no exact answer to your question. Nobody, not me, not any other GI doctor, or anybody else can give you the silver bullet answer. I wish that was not the case, but it is the unfortunate truth. But, most certainly there are dieting techniques (or supplement/probiotic techniques…right Bev:) that can and have worked for many a UC’ers. I for example, try to use the general idea of limiting and being very selective with the carbohydrates I put into my system through the basic gist of the SCD diet. And, when I have flare up situations, I go back to basics and eat meats, veggies, and some very limited fruit (such as banana) and cut out almost other things like coffee, honey, peanut butter, and some other tasty things that are part of my no-symptom daily plan.
    Do I see great results why I go back to basics instantly…No
    Do I sometimes have to wait for several days before symptoms improve…Yes.
    Do I sometimes have to wait for several weeks…Yes.
    Have I had to start a round of prednisone after a stubborn flare that I could not extinguish on my own…Yes, as I mentioned as well in the ebooks.
    Are all flare ups a bit different, Yes in my opinion.

    I guess what I’m trying to say is that there is no silver bullet, it bums me out to know you have not had a hard or at least formed bowel movement yet, but I’m still way hopeful, in-fact, I know that day will come for you.

    I’d encourage you to read some of the other stories on the site (which I’m guessing you may have already done). You’re a month and a half post diagnosis, and that for sure is a majorly hard time. But things will calm down, and sometimes, it just takes more time than we (as previously 100% healthy people) expect out of ourselves in rebounding from a health problem.

    One more thing, and again, this is just my opinion. If I was you, I’d probably consider scaling back if not droping the working out/personal training until you are feeling better. Probably not what you want to hear, and I’d be interested in what your doctors say about this too, but I’ve found with my own life, and with many other UC’ers, that steering clear of hardcore physical activity (tuffmudders…::Yikeees) while in an active flare up and during recovery from a flare is often a good idea. If you’ve dropped 20 pounds (I went from about 165 down to 130 at my worst so I know the deal pretty well) it is going to take some time to get that back, but you can and again I bet you will.

    Alright, my ramble here is way too long.

    I wish you the best Justin, and keep us posted on your rebound. It be a coming,


  3. Hey Justin,

    Thanks for sharing your story! I’m from New England as well, Boston to be exact. I was dx with UC in 2006. My most recent colonoscopy, 2011, showed pancolitis, boo. Everyone is different as to what helps them in a flare but when I’m flaring I keep to a low residue, “white diet”… I know it’s more healthy to eat grains, fiber, etc, but when your GI tract is constantly inflamed, active I find it best to give it a break. I eat a lot of white toast, scrambled eggs, mashed potatoes, sometimes Mac n cheese. Foods that are more on the bland side. I hope the prednisone/lialda get you feeling better soon! I’m on Asacol HD 6 pills a day and Remicade every 6 weeks. Luckily I’ve been symptom free for almost a year and a half now, fingers crossed!

    You’ll feel better soon. Hang in there!


  4. Hi Justin!

    Your story sounds very similar to mine! One tip I learned (and I am certainly not a medical professional by any means) is that when I was taking all my Lialda at one time like you are, I found I was having blood/cramping when it was wearing off after 22 to 24 hours in my system. So now I split them up and take them twice a day. It’s defenitly more of a pain but it made a huge world of difference in keeping it constantly in my system and all my cramping/blood issues went away. Anyway – just throwing it out there for what it’s worth!

    A far as diet, I went the low fiber, all natural route but it’s a lot of work. But I feel 100% better than I did when first diagnosed in March.

    Best of luck! Sending you good thoughts.


  5. Hi there. Plain and simple this disease sucks, but you can totally make it manageable. The Scd diet really is so helpful. I, like you, didn’t see much of a difference for at least 2 months, but if you hang in there, you should see a real difference. You won’t have to eat eggs and broiled meat forever, I promise! Plus, against all grain has the most amazing recipes like you said and you won’t ever miss the other stuff. Anyway, I just wanted to say hang in there. I’m your age too and very active as well and its just a major shock to be diagnosed with something like this. The fact that you are healthy though is a good thing and will play in your favor down the road! Wishing you the best!!!

  6. Adam is right about resting up during a flare. You will feel better in the long run and will help calm this fare down quicker.
    I am a very active person as well and I know how you would feel if I had to miss some training days. In the end though it is worth it. I just started following the SCD diet loosley and it is working great for me. No lactose or startches of any kind. I eat a ton of fruits and
    veggies with all types of meats, nothing processed. I do eat 1 serving of bread per day and I do take2 servings of lactose free protein. I need the cals and protein. Take the time to heal up and be patient. Your body will respond to the changes to the diet. Just note down what you ate and depending on how you feeladd or remove items.

    Good luck
    You have the mental toughness to tackle this disease. Focus the intensity that you use on the tough.mudder to beat this flare!

  7. Hi Justin,
    Get prepared for a healing journey with SCD. Soon your symptoms will go but stay on SCD for 2 years at least. You can get off steroids as well. Remember that its diet that comes in physical contact with your intestine wall.
    All the best for your healing and cure.

  8. I really appreciate all of the replies! I have my 1st consultation at the Mass General IDB Center on July 17th. hopefully some good news will come from this meeting and possibly some new treatments! I am a firm believer in the SCD and after reading so many success stories I am trying my best to follow this new lifestyle change. its just tough being used to eat whatever and drink and party with all of your friends and then BOOM world pretty much comes to a stop!

    thanks again everyone! I will continue to keep this updated!

  9. I agree with the others but I do wonder why your doctor didn’t take you up to 60mg of prednisone. I weigh 125 now but hAve been as low as 109 and been at 60 mg if 40 didn’t finish the job. In the hospital I was on IV at 125mg. I don’t tAke prednisone often but every few years it seems like I need a higher dose.

  10. Yes! It is safe to take the probiotic…in fact, EVERYONE SHOULD TAKE A good PROBIOTIC! After 14 years with pancolitis, I am taking one ULTIMATE FLORA CRITICAL CARE by RENEWLIFE probiotic, on an empty stomach and then no eating for at least half an hour…daily…and fermented L-glutamine powder, also daily, also on an empty stomach…and for the first time in my whole diagnosis, I am in remission and on NO MEDS at all!!! I have been in remission now for 14 months. No blood…no urgency…no more pain…BLISS…FINALLY.

    I took asacol for 14 straight years and never had a formed BM! So, in answer to that other question…no…sometimes those mesalamine drugs actually do the opposite and cause looseness. Stupid, huh?

    The L-glutamine actually heals the mucosa of the colon, thus, no more bleeding.

    You can take all of the drugs out there for UC (the UC merry-go-round I call it), but they will all eventually stop working because they just mask the symptoms…they don’t HEAL the colon. I only wish I’d known this 16 years ago…


  11. Hi Justin,
    Your story brought tears to my eyes as I can definitely relate to the pain and confusion, the weight loss, the constant “trying-to-do-what-you-can-but-nothing-seems-to-work”. It cycles quickly into the down spiral of depression and confusion combined, and you really don’t know where to even begin any more.
    Having said all that, hang in there. Better days are coming! One step at a time, I keep hearing for myself and also through other people’s writing on this site. It will take time, it will sometimes seem impossible — especially when you’re in the midst of this flare — but just take one step at a time.
    I am on a maintenance dose of 2 lialda twice a day as well, had a flare recently after feeling good for a while – and so prednisone suppositiries were added temporarily. I want to advise you to do something I found the hardest to do – stick with your medicine and give it a solid few weeks to work and gain levels in your blood stream and GI tract. You may not, and probably won’t always, need all the medicine you eel like you’re taking now. But until your GI tract has some healing time and settles down a bit, I would continue your regimine with the medicine until the Dr tell you it’s time for a change. Another hard thing I found I’ve had to adjust to is that before I used to down play my symptoms, always wanted to look and be cheerful for other people (my dr’s included)so they had no idea of the day in and day out suffering I was doing. If they don’t know, they can’t help. It took a very bad “flare” for me to realize that all the time I was trying to do the “right” thing by being a good patient, and not complain,but I was actually hurting myself by not communicating honestly with her. I’m not saying that’s what you’re doing, but I think we all try to make things a little lighter and appear a little better when we can. I think someone who loves sports and training like you, and is in the business of encouraging others in that way too, might have a little of that as well. My dr opened an email aspect of her MD practice – I see Carla Fernando-Gilday in Albany NY and she has a great group of GI people with her. I started emailing questions, concerns, changes in symptoms and she would email or call back. We became partners in this fight. I became more honest on MD visits and in the emails, and she or her nurse are back to me with a response the same day usually.
    So staying on your regimine for now, even tho you’re probably not a medicine taking person (I know I’m not) may help settle things out for your tired colon. The other thing I’ve recently done in the last two weeks is cut my diet first to rice alone for two weeks with a little pat of butter and touch of salt. Once I could tolerate that, I added pieces of chicken – very small amounts – and I will stick with that through the next week if I can handle it. I thought of it like when you have a baby and you introduce foods one at a time, see how they do, then add only ONE more thing at a a time, see how they do, and keep going. If the baby has trouble with milk or wheat, you wait to reintroduce it at a later time…that kind of theory.
    I have to say, I’m coming out of a flare better and with more hope by keeping it THAT simple. I did not want to do it like that, but I got to the point of desperation too. I know that for some people, rice is something their particular gut can’t tolerate, so for them they do something different. Whatever is easy to digest right now, and get simple not sugar loaded drinks, skip the caffeine if you drink it. I’m with decaf, watered down iced tea and water for now.
    Here’s the good part — I can see the relief on the horizon, and you will too. I have had significant decrease in pain, bloating, bloody diarrhea. It’s not a lot of variety yet, but I have been able over the last three weeks to eat fairly normal sized lunches and dinner. Yeah it’s just rice and chicken for now, but that’s a big victory for me. I wouldn’t add too many new products on top of all that til your flare gets under better control, but I did add a probiotic this week and so far so good. I believe a combination of these things is going to help.
    Lastly, and I know it’s a long email – because you love to exercise, remember when you’re in a flare, your body needs less intensity so it can put that intense energy into healing a 30 foot long GI tract! So exercise easy, walking, elliptical (light work), maybe easy swimming. Whatever is easy for you right now – don’t be hard on yourself about it. You’ll get better, and you’ll get back to things in time. But listen to your body on this one and save a little energy just for the healing process. Exercise as a way to keep your gut moving, reduce some stress, see the outdoors if you can take a walk…but don’t be upset with yourself if you need to take it a little easier for now. You’ll get there! Keep us posted! I’m finding checking in every day is a great way to learn and share and see what’s out there for the UC community, and see there IS life with UC. :)

  12. Hey Justin,
    I can relate to your story big time. I’m 18 and live in CT, I was always active and still am. Love to workout, play hockey and so on. I am the type of person who loves to compete for things. About a year ago now I started to see blood in my stool and let it bother me but didn’t tell anyone about it, Back then I was drinking beer and eating what I wanted. I was always in good shape and at that point weighed about 220. As I began to ignore the bleeding it seemed to stay the same amount of blood but I had to go to the bathroom more frequently. Anyways long story short I went to the doctor and was told I have colitis. I continued drinking and working out but my energy always seemed to be drained and I began feeling dizzy when I got up from laying or sitting down. I soon got blood work down found out my allergies to see if they had any roll in this illness but I still don’t know for sure, and I got my blood taking for things I was lacking. It was amazing to me how fast you become anemic if your losing blood. And with that means your iron is low and that makes it hard to find the energy. You talked about how you have not had a firm bm yet. I also havnt, they are formed somewhat but aren’t how they used to be. I think you should really go on the scd and stick to it no cheating. I have been on it for a little over a month now and it did wonders for me. I only go to the bathroom twice a day morning when up and evening. As a person who likes to workout you are going to have to settle in for a bit if you try to push through the weakness your going to hurt yourself and get yourself sick. Believe me I love to workout and try to do it everyday but when I was in flares I would get frustrated with myself not being able to lift and would get even worst. I also understand the weight loss I went from 220 to 190 in about 3 weeks. sucked big time and I had to start with light weights again at the gym. You talked about how you just wanted a firm bm, I looked up on different uc websites and its shown that L-Glutamine can help stop bleeding and help with firm bm. Now when I heard this I didn’t want to take a supplement because of the medication I was on but I got tons from the spinach and all the meat I eat. You also asked what do you snack on? I have the same problem, if im out with friends ill be hungry and looking for natural untouched foods and that is hard to find in normal houses. I am going to start making beef jerky. It may also be a good option for you because its lean protein and fills you up. Involving drinking..well you are going to have to stop for a while. And believe me when I heard that I freaked out, I used to drink all the time. I am now just currently trying vodka and seeing how it effects me. I’ve heard it is easier tolerated with people with uc. Keep your head up and don’t worry about not having firm bms, It’s normal. I know for a fact the scd will help with your symptoms and very soon you will be back to working out and being able to be comfortable and kick back with friends.

  13. Hey Justin-
    Go ahead and take a probiotic. It’ll help your body restore everything your intestines aarent absorbing.
    I use to workout 5 days a wek but in a flare right now. I may go to gym to do a few cardio like walk on treadmill or bike for a few mins.other than that you shoudlnt be doing any physical activity that’ll harm your stomach. It’s gotta heal and give it time to let inflammation go down.
    Next time you speak to a Dr ask him to go on a drug like humira. Remacaide. Asacol. 6 mp.
    I’m on same dosage of prednisone and lialda as you. Don’t talk all in morning. Break it up. Half in morning and half after dinner works best on my stomach.
    I know you been only diagnosed for a month.I was diagnosed in Jan 2011 and didn’t see any improvment till after 6 months. Just establish a good GI doc and you’ll get good results.
    My Dr doesn’t think I need a special diet. Only when I’m in a flare up intend to bland foods. When im not in a flwre i wet whqtevr I want.

    Good luck to you and ask your Dr about Humira it works great for me!

  14. Hey Justin,

    I’m from Rhode Island two, and your story really resonates with me. I am running a half marathon for the Crohn’s and colitis foundation of America in two weeks exactly, and I’m definitely feeling a lot better. I have Crohn’s – colitis, Which is not very fun combination. It seems that the Crohn’s disease was finished ruining my terminal ileum and a fistula went across my abdomen and attacked my large intestine so they had to take out a big chunk of the sigmoid colon…. Like my hero Adam says everyone is different. His advice is really good. I do agree with slowing down on the exercise front. A good walk every day is fine, but you should definitely slow down. I wrote a piece on Cercis and IBD for the blog obesity panacea, and it got tons of response I can’t find the link, but you can look it up with my name and “obesity panacea.” Overall, exercise speeds up the system.

    Bev (hi!) is so awesome —and alk the other commenters—and I agree that probiotics are really helpful. Also, keeping a food journalism good idea. You might want to try and elimination diet. I talk about that in my book,”Lliving with Crohn’s and colitis”. You introduce foods gradually, keeping track in a daily Journal. It really helps. I know it will be hard for you not to party with your friends, but you should probably back off on the alcohol, too. I have been drinking very light vodka with tonic and a line on these hot summer nights when I go out with friends. Vodka is SCD legal, right!? Take care, and try to do some stress relaxation: like yoga and meditation and perhaps massage and there’s a wonderful place in Wakefield Rhode Island called “all that matters.” I believe they have a naturopath ND on staff.

    Many of us have had blood and real problems, but you’re not alone, and there is light at the end of the tunnel. I know it sounds kind of trite, but I remember feeling the way you are feeling now, and make sure you have a positive attitude Going forward.

    A year ago, I was on prednisone (make sure you taper off slowly when the time comes), and antibiotics, my gut was a mess. You need to slowly build back the flora and the balance in your gut. You can do this!

  15. Justin, give it some time. It’s crazy how long it takes to get your digestive tract back to normal. I became steroid dependent and was put on 6mp. For about nine months I was better but then had a flare. Rather than get back on steroids only to get sick once I stopped,I decided to try the SCD. It took a couple of weeks,but I see improvements every day. Make the yoghurt, and let it drip for12 hours before eating it. There’s a cool video on

    1. I submitted that before i wanted to. Lol! Anyway, there’s a cool video on YouTube that shows you how to make Greek yogurt using a strainer and paper towel (pick the one that says “tuck that s%#t like a cross dresser at Mardi Gras.” It’s really easy! I have been loosely following the SCD (i don’t trip on my spices, i use a small amount of bottled ranch dressing on my salads, i occasionally have balsamic vinegar, and I use half n half in my coffee every morning–I usually drink 3 cups). I have been tapering off of the 6mp (cut my dose in half) for the last five weeks with no return of UC symptoms. I’m flour more days I will cut my dose in half again four stoic weeks and then be completely off of 6mp. Long story short, try the yoghurt. Out Monday make you poop normal again.

      1. I submitted that before i wanted to. Lol! Anyway, there’s a cool video on YouTube that shows you how to make Greek yogurt using a strainer and paper towel (pick the one that says “tuck that s%#t like a cross dresser at Mardi Gras.”) It’s really easy! I have been loosely following the SCD (i don’t trip on my spices, i use a small amount of bottled ranch dressing on my salads, i occasionally have balsamic vinegar, and I use half n half in my coffee every morning–I usually drink 3 cups). I have been tapering off of the 6mp (cut my dose in half) for the last five weeks with no return of UC symptoms. In four more days I will cut my dose in half again four stoic weeks and then be completely off of 6mp. Long story short, try the yoghurt. It may make you poop normal again.

  16. Hi Justin, sorry for the late reply though I was going over the UC site & just read yours.

    Im from Adelaide Australia I’ve had UC for 5 years and had all the symptoms you’ve mentioned.
    I work and have children so the pain and symptoms can be very challenging! Especially taking the children to school & getting to work on time!!

    I am currently taking steroids so feel a lot better! I also take mezalazine and azathioprine.

    What I have done for the first time is see a dietitian. I tried a very low fibre diet for a week and this didn’t work for me as I was experiencing a lot of stomach pain.
    I saw her again and am doing the FODMAP diet I won’t go into it though google it. It’s working really well!! I’m feeling pretty much symptom free!! Hmmmm though I’m also taking steroids. In about 6 weeks ill go back and start re introducing some of the Fodmap food groups to see what doesn’t agree with me.

    Best of luck on your journey!! I’m starting to feel strong enough to go back to the gym this morning yayyy!!
    Cheers Bec

  17. I am overwhelmed with the replies! I appreciate everyone’s suggestions… I have nice new yogurt maker on order so I will definitely be getting up to speed on that!!

    thanks again, going to Mass General IBD clinic on the 17th so I should have some cool new ideas as to where to head with this!

    1. Keep us posted, because I know I’m really routing for you and I know lots of others are as well! Keep us up to date with your yogurt making – I haven’t tried it yet – looking forward to it. And I’ll say a prayer for you as you go to Mass General IBD clinic!

  18. Hey Justin…now that you’ve made it to he right place and read Adam’s books, etc…I had to go slower than Adam and followed another site…”pecanbread stages”…I don’t want to put the site in because it slows down the responses. Also,” SCD lifestyle four horseman.” Sometimes we are not necessarily allergic to certain foods, but maybe intolerant. Check those out they helped me a lot. Yes, 100% probiotics and be very careful with the supplements, they have a lot of hidden ingredients that may cause irritation. Less is best approach sometimes and keeping track of everything.
    Give your body a chance to heal from the inside out and listen to your body and it will tell you how much to do!
    Good luck, Shelly

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