Ulcerative Colitis Robs You of Your Life

36 Responses to Ulcerative Colitis Robs You of Your Life

  1. Krysta Rupp October 26, 2013 at 6:06 am #

    I have had UC for 6 years. I am 34 niw and was diagnosed at 27, within a month of giving birth to my first child. It has been a long toad and i now have 3 kids. My following pregnancies were difficult and resulted in premature births. (They ar doing great.) I have been through many meds and have recently began Humira. I have been on Humira almost 4 months. I have not had any major side effects besides headache, itching, and an ache in my side after i take the shot that lasts the rest of the day. I am currently in a flare for which Humira has not helped and is getting worse. My GI doc has increased the dose now to once a week. We will see if that helps. My next step is to try to SCD diet. But with three kids and a husband, its daunting. (I am tired!)I have tried vegan and gluten free already without any success. I would not be scared of Humira as it has helped many many people achieve remission which makes it worth a try. Good luck!

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:14 pm #

      Hey Krysta, I’m glad to hear that Humira is working for you. Thank you for sharing your story. I was wondering if you were hesitant in trying Humira. I’ve read all of the scary side-effects and even the potential for developing lymphoma and other cancers as well as TB or fungal infections during use. I REALLY don’t like the sound of that. It also has the potential of increasing my risk of contracting these infections or developing malignant cancers since I am a young adult male. Great. I know you’re a mother and wouldn’t fall into the aforementioned category, but I was wondering if you knew the potential side effects before you started Humira and if you did, whether or not that made you consider and re-consider starting the medication, weighing the risks versus the benefits? I would greatly appreciate your thoughts/opinions as I am in the stage of getting back to my doctor about my decision to either start Humira…or do nothing at this point, which he obviously frowns upon and is not in favor of as UC is a chronic condition that doesn’t get better on its own.

      • John C April 29, 2014 at 2:51 pm #

        I tried Humira for a while, and it proved to be only effective for a short period of time. After changing gastroenterologists I found out from my new specialist that Humira is greatly inferior to Remicade for treating Ulcerative Colitis. The issue is that Remicade is an infusion that needs to be done on a bi-monthly basis (6-8 weeks) verses the easy to use Humira injections. The doctor I was seeing said that in their case study of Humira, they found it to be only 10% more effective at treating Ulcerative Colitis than the placebo. That isn’t to say you shouldn’t try it, if it works it is probably the best thing because it is less time consuming. Just realize that it doesn’t work for everyone, and there are other (statistically) better medications like Remicade infusions that can treat Ulcerative Colitis.

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:16 pm #

      *might start working for you once you’re out of the flare…sorry about that haha

  2. Jason October 26, 2013 at 6:17 am #

    Sorry to hear that you have to go through this. I was diagnosed in January 2012 and within 3 months my symptoms were horrible. I’ll spare the details since I’m sure you’re quite familiar with them. By that June I was in the hospital getting IV steroids. It was a miracle! I thought I was cured. Guess again…..symptoms came back, started Remicade and had horrible side effects plus it did absolutely nothing for me. Ended up in hospital again in October for another round of steroids and decided at that point it was time for surgery. I had part one of the j pouch surgery November 14 of last year and my takedown this past January. Without question the best decision I’ve ever made! I feel better now, and am in better shape than I’ve ever been in my life! The recovery from surgery was a little rough at times but worth every second. I don’t take any meds at all and the disease is gone! I myself strongly suggest surgery since it worked so well for me. But that decision is up to you. Good luck my friend, I sincerely hope you kick this disease in the ass just as I did!

    Jason

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:18 pm #

      Do you have a normal diet now that you have a J-pouch? Are there any foods that are off-limits for you? I don’t want to consider surgery and then not even be able to eat some of the foods that I enjoy. I feel like that would be a total waste, plus, I’d be missing my damn colon! Lol

  3. Jackie October 26, 2013 at 6:21 am #

    Dennis,
    I stopped meds for my UC 6 years ago. I treat myself with turmeric, aloe juice, probiotics, red raspberry leaf tea, cayenne tincture, oil of oregano, and slippery elm, and diet. The quality of your herbs are important. Obviously diet is huge ! I’ve had many GI’s tell me no need to change it. I have not found 1 dr who actually helped me. I took to my own research and trial and error.

    I also had cdiff which I had to diagnose myself, which led to my UC in the first place. Look into FMT for your cdiff infection.

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:19 pm #

      What did your doctor say when you decided to take matters into your own hands and treat your UC naturally? And do you have any more flares or are you completely “cured” now that you’ve been off of meds for 6 years? Do you have to continue to take the supplements in order to stay in remission or are you healed?

      • Jackie January 2, 2014 at 7:25 am #

        I’ve had doctors try to discredit me, my herbs, etc. This past September I had to get a colonoscopy done and was bullied into taking asacol again. I’m allergic to it and the dr told me I was making up side effects. I caved and took 2 doses. I was in agony and vowed never to take it again. The doctor was and is a total jerk! I obviously stopped going and took to my herbs and diet hardcore again. I Was able to get into an almost full remission in about 8 weeks.
        I made an organic cayenne tincture which really threw my body into a healing mode!
        I still get bouts of diahhrea and mucus at times, but no blood, no urgency, and no poisonous medications! I eat as organic and non gmo as possible and that helps tremendously.

        • bev January 2, 2014 at 7:33 am #

          Wow…great post Jackie…bullied into taking asacol…boy I hear that! It’s almost unbelievable that some doctors do this, but that’s exactly what they do. I too cannot take asacol. It made everything worse and made me so ill I wanted to end it all. So glad I didn’t! My doctor didn’t believe that asacol could make anyone so sick I also had terrible systemic side effects fron the steroid enemas that the doctor said could not happen either. Needless to say, I’m off all of the drugs now and just try and manage this mother on my own, naturally.

          I feel a million times better and I want to live again! I’ll never ( yep I’m saying NEVER) take a med for UC again.

  4. Wendy
    Wendy October 26, 2013 at 6:56 am #

    I had that issue with a crappy surgeon. I just left him and went to Mayo Clinic (much better). He was the only surgeon in our area that could remove a colon. I also totally know what you are talking about with the urgency being the WORST part of dealing with UC. I hope you are out of the flare soon. I am in a flare. I lost 20 lbs in the last couple of months. I got the bleeding under control with astaxanthine and supplements and vitamins. I refuse to take drugs, although, if it gets bad enough I will. I just think drugs are a mast in the case of UC as far as my experience is concerned and drugs don’t actually cure anything.

  5. Allison-3
    Allison Tranter October 26, 2013 at 7:26 am #

    Hey Dennis-
    So sorry to hear all you are going though. You seem to have an amazing attitude and that is half the battle. I also earned my Biology degree while in a 2 year active flare of UC. I can look back and laugh at the times I crapped (and peed) my pants and passed loud, smelly gas in Microbiology lab (you know how close you are with your lab partners). It was rough- and so embarassing, stressful & isolating.
    with that said- one of the best things you can do is research THIS website (and you are here). I have received life saving advice and support from Adam and all these peeps. It is comforting to know that I am not alone in UC.
    First off, You need to clear up the C-diff once and for all. It mimics UC and may even cause UC (read the research). Personally, drugs only masked my symptoms and I chose to STOP pursuing that road. GI docs are in the Dark Ages- my first doc told me I’d have a lifelong illness, be on meds my whole life and eventually need surgeries. Dr. Death sentence- I said “can I heal my colon? can I change my diet?” He chuckled and said NO dear. He literally sneered at me! Total PRICK. I was devestated.
    Of COURSE food matters. Just like it matters for diabetes and arthritis and all kinds of diseases. Remember, as you are pursuing your medical degree not to let yourself be fully indoctrinated into the cult of pharmaceuticals. Also, pharma can’t make money on telling us to go and eat the right food….??? I think GI docs have the best intentions BUT they know what they have been taught and they BELIEVE in the pharmaceuticals. I think they don’t want to be labeled “quacks” if they put their faith in nutrition and stress reduction. I can only hope it will eventually change!
    I was also a Type A and that is not always the best for UC. I have learned to relax and now I just strive for Type B+. Yoga, meditation, dealing with my emotions blah! blah! blah! Kudos to your wife- she rocks!
    Read Breaking the Vicious Cycle- SCD diet. I am drug free, pain free and living a pretty normal life. When I stress too much or stray from my diet my body lets me know- but now I am committed to LISTEN and honor it.
    Best of luck with med school and your health and healing-
    Allison

  6. Shannon D
    Shannon October 26, 2013 at 7:36 am #

    Reading your story reminds me a lot lf myself, I was too diagnosed at age 17 and running to the bathroom in school all day long and the car rides definitely remind me of myself and how bad some trips would be, I feel your pain. I recently went through a terrible flare and was hospitalized for 22 days. I went from having 10 inches of my colon for 5 years to all of a sudden 75% infected and all of my medications stopped working. I was on prednisone, mesalimine and aprisio. My doctor had/has no idea why my colitis flared like it did and why the medications stopped working. He also tried remicade for my final medication option but that didn’t touch it either. I finally was brought with my only option which was surgery and believe me I cried and cried, I am 22 years old and the thought of surgery scared me so bad but let me tell you, it’s not as bad as you think and I feel a million times better. No more worrying where bathrooms are. I am still healing from surgery I just got it 2 weeks ago but I can already tell a huge difference. I really hope medications keep yours under control and you won’t need surgery but if that’s what it comes down to, please don’t be scared and if you have any questions at all about the procedure or how the pouch is feel free. Getting this surgery being only 22 years old definitely opened my eyes about life in general. I hope things get better for you and keeps all of us updated. You’re also so lucky to have such great support from your wife! Having the support around you really helps. Good luck with everything and I agree with you about your hesitations about humira. I had never taken it but I have also read about it and all these medications are very iffy the more serious UC gets. Good luck to everything.

    • Matty October 26, 2013 at 2:52 pm #

      Hi Shannon I’m about to get the j pouch done very soon i have a few questions I you wouldn’t mind talking about it?

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:25 pm #

      Hey Shannon! I’m glad to hear that you are pleased (in hindsight) with your decision to go through with surgery. My question is, now with a J-pouch, are you able to eat normally like you used to before being diagnosed with UC? Are there any foods that are off limits for you? Do you feel any different now knowing that you don’t have your colon? I know that’s a weird question but is your life normal?

  7. Nanda October 26, 2013 at 8:12 am #

    hey dude,

    I am so glad you posted this, i was diagnosed with UC in 2008 whilst doing my A level exams i am now 22 and working as a physiotherapist in a hospital. I totally understand how hard it is to do your job when you have to rush to the loo every 10 minutes. i am struggling big time at work, it takes me 1.5hrs to drive to work and i do exactly the same thing as you, 3/5 days i also have to stop on the side of the road and do what you do! your wife is amazing to be so supportive, you are so lucky. You are totally right, this disease robs you of yor life and it has stopped me doing so many things too, i am worried about my career and will probably have to find myself a boring office job so i can be close to a toilet and not relied on too much (like in the middle of treating a patient that i can’t leave alone, needing to go to the toilet is so embarrassing!!).
    I am also on asacol at the moment but the damn things pass right through me and i can see the whole tablet in the toilet bowl which means its not working! I’m not sure what my next step will be!

    I just wana say that you are not alone, you have the right attitude, don’t give up on your dreams and i hope everything works out for you!

    • Lauren B October 26, 2013 at 9:22 am #

      Haha dude I’m like the women version of you! You don’t know how many times I’ll be in the middle of working an have that feeling of “oh crap (no pun intended) I gots to go..” And now being able to. Being young and dealing with this sucks badly! Guess we’ll grow up stronger then normal people out age! Good luck as you go through this journey :)

  8. Lauren B October 26, 2013 at 9:17 am #

    Ok first of all I have to say I love your attitude and humor about this disease! Using humor definitely helps me get through the days (I mean heck we’re goig to be dealing with this disease forever.. Might as well laugh a little).

    So I started humira and have had a really good experience with it. I do have some urgent bowl movements here and there (once or twice a week). But my energy levels are back and I am feeling a lot better! My insurance is covering it as of now (I feel very blessed about that). I do know that humira had a program that will help with cost (from what my GI Dr. Told me). I suggest getting on it and off of prednisone! Prednisone is so so bad for you!
    Good luck as you go through this bro!

    Ps. Lucky you for finding an awesome women who will go through this journey with you!! What a blessing :)

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:30 pm #

      Hey Lauren B! Thanks for sharing!I’ve read all of the scary side-effects of Humira and even the potential for developing lymphoma and other cancers as well as TB or fungal infections during use. I REALLY don’t like the sound of that. It also has the potential of increasing my risk of contracting these infections or developing malignant cancers since I am a young adult male. Great. I know you’re a female and therefore wouldn’t fall into the aforementioned category, but I was wondering if you knew the potential side effects before you started Humira and if you did, whether or not that made you consider and re-consider starting the medication, weighing the risks versus the benefits? I would greatly appreciate your thoughts/opinions as I am in the stage of getting back to my doctor about my decision to either start Humira…or do nothing at this point, which he obviously frowns upon and is not in favor of as UC is a chronic condition that doesn’t get better on its own.

  9. mj October 26, 2013 at 12:21 pm #

    Hey Dennis,

    I can totally relate, I had the worst urgency/incontinence this year, worst than I have ever had in a long time. I’ve had UC for about 13 years now, since I was 17. Even car trips on the way home, if something held up traffic it meant I wouldn’t reach the bathroom in time. Or if I was walking to work, I would have to run into the local hospital bathroom (it was the closest bathroom on my way) and clean myself up, before going home and then going back to work again! Impossible to live life like that.

    I was sort of ignoring my flare for months, letting myself get overworked, overstressed and not watching my diet. Ended up having a hospital stay from exhaustion/dehydration and got put back on Prednisone 50mg (which did nothing for 2 weeks) and Pentasa. I don’t have any experience with Humira so I can’t help you there unfortunately.

    The key thing that’s changed my life is I reduced all my stress (cut down on my extra workloads) and started the SCD diet. I’ve been on this since my hospital stay, and it’s like I’m free again, seriously. I did a lot of reading online, I got Adam’s amazing ebook and bought Breaking the Vicious cycle, and thought I had nothing left to lose, give the diet a go.

    Now I have one BM at night/early am, and then usually nothing all day, maybe once again at night (this compared to 6 times one night and like 5 times during the day minimum). I don’t have to constantly moniter my pain levels, where the nearest bathroom is, how this food is going to feel once I eat it… it’s de-stressed both my mind and my bowel.

    My GI told me diet doesn’t make a difference either, but when he saw how well I was doing on SCD he said “well it doesn’t hurt to keep going on it”. Diet makes a HUGE difference with UC, don’t listen to anyone that says otherwise! hehe.

    I also take probiotics everyday, 3 times a day and am going to re-introduce L-Glutamine soon. Staying off all other supplements for now (and I used to take heaps of different things, including protein powders for gym).

    All the best with your treatments, I hope you find something that works for you.

  10. Matty October 26, 2013 at 2:49 pm #

    Hi nice to read your post my situation is very similar to Jason above I haven’t lived with colitis for very long but it did come on aggressively and I had my colon perforate in 2 places and had to get sugary Jason is right sugary can be tough but the end result is worth it if u don’t want to live with it I’d consider surgery as well but that’s up to u I wish u all the best and hope you get better

  11. PeterNZ October 26, 2013 at 6:04 pm #

    Dennis my precious,
    You could talk to Sheldon about a little course of Methotrexate….
    Colitis doesn’t ruin your life. It just is life mate.

  12. uma October 26, 2013 at 6:25 pm #

    You MUST try probiotics Garden of life Primal Defense has put my UC of 22 years in remission. It is three years now and i do not have a symptom. And my advice is not to touch wine or beer as they are a strict no no for UC ers. Just try these you have nothing to loose. You will be on the road to recovery .

  13. Tamara Eden October 27, 2013 at 2:12 am #

    Ok, so your story sounds almost exactly like mine except my symptoms came on slowly when I was 19 years old attending VA Tech.

    I’m on my iPhone, so this won’t be long post. But I live just outside of Washington DC and have seen Gastro docs here, Georgetown University and THE best (in my opinion) at Johns Hopkins (Dr. Theodore Bayless). I’ve heard the University of Chicago. If you want a name or two there email me.

    First and foremost, your UC is so bad because of the recurrent C-Diff. Last Summer I was in the worst flare of my life, thought the disease was getting progressively worse, turns out I had C-Diff. It was recurrent but we finally nixed it. If I were you, I would find a local doctor that is willing to do fecal transplant for you. If you have nobody locally, hop on a plane and get to one ASAP. There are clinical trials going on with Dr. Lawrence Brandt in NY, but also at University of Chicago. They are difficult to get into and the FDA has imposed restrictions on docs doing them outside of a trial, but the results are FANTASTIC. Better than any antibiotics, EVER. They are looking at almost 100% cure rates, what pharmaceutical has that. Some people with UC have seen a simultaneous remission in that disease with this. I desperately wanted it done and they were about to perform for me (no FDA regs at that time) but my C-Diff didn’t return the 3rd time. They are learning that it may be an effective treatment for UC and there are also trials for that, but it may be multiple “infusions”. HUGE advances are being made with human micro biome studies that look as though they will change the course of treatment for many GI disease sufferers, it just takes time. In the meantime, I think Fecal Transplant would be life changing for you. (Don’t get grossed out by it, if you read up its really natural medicine– dating back hundreds of years, farmers use it to treat I’ll animals and bring them back to health). Basically you are repopulating your gut bacteria with that of a perfectly healthy individual. That along with probiotics is curing C-Diff.

    As for the UC, my Mom was VERY I’ll and resistant to biologics ( I won’t do them because of Potential side effects an long term risks to suppressing your immune system this way. BUT, Remicade, a TNF Blocker like Humira gave her, her life back within. 3 weeks.

    In the meantime, get that decal transplant, get off the prednisone if you can before you get adrenal insufficiency. There is a newer drug, Uceris that I take along with Apriso that is working for me. It’s basically a steroid that is only released in the colon and had FAR fewer systemic effects. It’s the first thing to put me into 90% remission I’d say (I still have urgency, but no blood, mucous and only go twice early in the morning when I wake up and am good for the day). I have a medical background, but am not a physician, so being a Type A myself, I’ve read more literature than you can imagine. I also read medical textbooks for fun! Ha. If you want more information, let me know and we can talk on the phone/Skype… Best of luck and keep us posted!

  14. k October 27, 2013 at 5:16 pm #

    Dennis, I so agree that ulcerative colitis robs you of your life. I am forever grateful for the surgery that gave me back a near-normal life. k

  15. Corbo October 28, 2013 at 12:54 am #

    Dennis,
    I feel your pain mate and I can draw a lot of similarities between your story and my own. I’m only 21 and I was diagnosed in April 2012 in the U.S. while at college where I was studying and playing baseball. I had been in a constant flare for almost 4 months. I returned home to Australia for the (US) Summer for treatment where I was prescribed medication before I returned to college in August 2012. Ultimately all the medication did was allow me to get out of bed each morning but didn’t help my condition at all. I had to withdraw from college in March 2013 had the two part surgery (proctocolectomy + pouch construction + ileostomy and ileostomy reversal) on July 25th and October 9th. Both my surgeries went well despite me having some complications afterwards that extended my stays in hospital but nothing permanent. I’m currently recovering from my reversal but I feel better than I have for almost 2 years! I’m currently writing my story now and plan on submitting it to ihaveuc shortly.
    Also, it’s great you have a wonderful wife who is making this journey with you. I’m not married but have a fantastic family and friend support base that has helped me immensely.
    I hope all goes well mate, goodluck! Any questions – hit me up.

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:43 pm #

      Hey there Corbo! Thanks for sharing your story! I was wondering if you have any limitations on the foods you can eat after having surgery? Are you eating normally? Can you have all of your favorite foods and drinks or are some things off limits? Let me know please. Thanks!

      • Corbo January 2, 2014 at 10:41 pm #

        No mate I didn’t have any limitations. However, due to a few unfortunate complications (abscess, adhesions) I ended up having another surgery in November 2013 and I have my ileostomy back. Although this time it’s functioning a lot better and I’m living a normal life and don’t notice the bag until I have to empty it. My reversal is scheduled for Feb 5th.
        As for the foods, I could eat anything I wanted again without any issues after my reversal. However, when you have a stoma you have to avoid foods that don’t digest easily (corn, some vegetable and fruit skins, nuts, etc) to avoid a potential blockage.
        Hope that helps! Cheers.

  16. JohnnyFC October 28, 2013 at 4:02 am #

    Hi Dennis,

    i was diagnosed in August 2008 with UC as a 24 Year old. I am not going to sit here and say that it doesn’t suck because it does. Life would be more simple and less restrictive without UC. Just try not to think about the things you CAN do instead of the things you can’t. be prepared, which it sounds like you are doing and just try to stay as positive as possible. there is a lot to live for.

    I work full time full time at a Car dealership, i recently got engaged and have a home loan. sometimes i thing how am i gong to get through this all with UC, but i find a way.

    Just stay positive.

    Johnny
    Adelaide, Australia.

    St

  17. Mark from Boston
    Mark October 28, 2013 at 11:26 am #

    Hey Dennis,

    I completely agree with you – the urgency of BMs is definitely the worst part of UC. I’m 31 and was diagnosed just over a year ago, never having had any bowel issues whatsoever for 30 years of existence. To go from not having a single symptom my entire life to dealing with full on UC flare literally over the course of a few days was incredibly frustrating. I have tried pretty much every medication out there so far, with the exception of Humira and Remicade, which are kind of the last ditch options out there from a medication perspective. None of them (even Prednisone) brought me into remission. Each medication brought me a little relief from my symptoms, but none of them brought me remission.

    I have been experimenting with fecal transplants, with the help of my incredibly supportive and awesome wife, who is a registered nurse. We’ve done a significant amount of research on it and from what we have read up, and from personal experience, I can tell you that this is ABSOLUTELY one thing that you must try before going to the biologic meds. It’s basically free, outside of purchasing the equipment up front, and it put me into remission within just a few days. Gross? yes, but the results are undeniable. I strongly recommend looking into this before you go down the Humira route, there’s nothing to lose in trying it out and I can personally tell you that it has definitely worked for many UC’ers out there.

    • Dennis P
      Dennis Porebski December 31, 2013 at 1:48 pm #

      Hey Mark! Thanks for sharing your story! I’ve heard of fecal transplants, but only for eradicating C diff from the lower intestines, not for treating UC. Did you have C diff or just UC? And did you have your doctor do the transplant or your wife? lol. What kind of equipment is necessary and doesn’t the fecal material need to be from a close relative or something like that? What a weird topic haha but hey, I don’t care. I want to get rid of this disease.

  18. Sher October 28, 2013 at 8:25 pm #

    Dennis! Wow it’s funny to talk about crapping your pants online w/ complete strangers, but only here can soooo many relate, what I used to do in a horrible flair when even a 20 min car ride felt like an hour, I’d keep those plastic disposable glad ware containers from the dollar store under my seat in my car, if the urgency was so bad id pull over, try find a somewhat secluded area, put the container on my seat, put my jacket over my lap n go in the container, use a wet wipe, put the lid on and throw away in the nearest dumpster! Always worked and never had to change nasty clothes once I got to work or home! Luckily no one ever noticed a thing.
    I’ve had this uc thing for about 12 years and yes it does suck, I tried every med you name it! Most of them worked for a while… they all seemed like forever to kick in, but the benefits always wore off! I was throwing money down the toilet (he he)! Finally I said if I’m gonna feel like crap and be flairing on alllll these damn meds I might as well feel like crap and flair on no meds and not deal w/ all the other side effects, ( kidney infections, bruising, nausea, etc) and so I did it, I quit! I started doing Vit E enemas taking vitamins and feeling better, not perfect, but better. When I changed up my diet and went gluten free about 4-6 months later I felt normal for the first time in 6 years! That lasted for a year until recently.. Damn weather change! But I’m not giving up, I’m gonna keep on pressing on, and I heard from someone on here before, do the best you can everyday, if your best is lying on the couch or barely getting out of bed… Don’t feel guilty, we get tired, we need to conserve our energy, let it be what it is. I spent so much time trying to do so much to feel “normal”, but it just wore and stressed me, now I know when I’m not feeling well to relax, take it step by step and not over do! I wish you and everyone else the best success and remember everyone goes through something, this just happens to be our something, it’ll make us stronger!

  19. Polly
    Polly November 1, 2013 at 1:30 pm #

    Hey Dennis,

    I echo Allison’s comments above!

    Thanks for sharing your story… Many parts of your story overlap with mine… It hit me especially hard a few times… I was fighting back tears and laughing at the same time with your comment about Netflix! Thank you Lord for understanding spouses that do not complain about all the times we run to the restroom and have to pause the Netflix. Hahahahahaha…

    Your body is in such an inflamed state right now… you need to get the inflammation down… and unfortunately it seems that Western medicine doctors are not trained in that area… you could try a nautropath or a Functional Medicine physician… or an herbalist… I would recommend getting gluten out of your diet right away! You can cut gluten, corn, soy, MSG, processed foods, etc… I would start taking some probiotics (and lots and lots of them), some Vitamin D and some turmeric to get your inflammation down.

    Breaking the Vicious Cycle is a great read, Wheat Belly is another one… there are tons of them! I suggest treating yourself to the Almond Flour Cookbook… oh, and of course Adam’s book “Feeling Crappy to Feeling Happy” is a wonderful read!!!

    I’m so sorry for what you’re going through, but this experience that you’re going through is going to make you a fabulous physician.

    Hugs, it will get better!
    Polly

  20. k January 3, 2014 at 8:33 am #

    Hi Dennis,
    I had an emergency ileostomy three days after I was diagnosed with uc in 1975 – 39 years ago now. (J pouches hadn’t been developed yet.) The ileostomy gave me my life back. I still consider it a miracle.

    In several of your December 31 posts you ask j pouchers about their diets and any restrictions. I can only respond regarding my ileostomy, but I eat 99% of what I want. Am only careful with very fibrous things, such as raw green beans, which I eat sparingly and chew well.

    In now rereading your account (I first read it when you posted it in October), I must say you are a much braver guy than I am. I wouldn’t have had the physical or emotional courage to face what you have faced over the last 6 years. Here’s hoping 2014 is a very good year for you.
    k

  21. Yogan April 24, 2014 at 1:36 pm #

    Hi

    Reading your story pretty much sums up my life right now. I also have a Bachelors of Science Degree.

    These days I find myself going to the bathroom three times before leaving the house just to make sure. I also carry a backpack with spare pants and boxers and toilet paper. I also keep Immodium in the car as a just in case.

    The disease is crazy. I plan my outings around going to places where I can easily access the bathroom. I try not to eat at all on dates lest I need to go running off to the toilet.

    I know exactly what you are dealing with. I managed to go through the whole of 2013 without an accident and two weeks ago when I couldn’t make it home in time from work it just shattered my confidence and everything. Right now I find it difficult to overcome the fear and go anywhere in case I dont make it. This disease really screws you over big time.

    I am still on Asacol and find that works really well.

  22. Sally April 21, 2016 at 12:09 am #

    Hi,Dennis
    I was hoping to read an update on how your doing. I deal with several health issues and still trying to find a GI and Allergist doctor in Tulsa. I was trying to find your review on Dr.Sheldon but couldn’t find it. I was wondering what he thinks of SCD, Gasp, Low FodMap and other diet plans. If I can heal through an eating plan, I rather go that route than taking medication. Being ill for ten years has affected my gut and brain, I truly feel the connection between the two. Do you have a FB page or blog where it’s easier to communicate?

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