My Son’s Recent Colitis Diagnosis

Hi my name is Lynn from Queensland Australia and my 26 year old son has recently been diagnosed with ulcerative colitis after having symptoms for about 6 years.

Our Journey So Far

Three weeks ago my son was diagnosed with mild to moderate pan colitis after years of loose bowel motions around 6 a day.

Around 5 weeks ago the urgency lead him to have a few accidents and his first bloody stool. So his GP sent him for an ultrasound then off for a colonoscopy. When he was diagnosed the gastroenterologist prescribed mesalamine tabs and a salofalk enema at night, working in pharmacy I wasn’t too happy to see him going on these drugs long term, anyway he started the drugs and really struggled keeping the enemas in and was waking every hour to run to the loo so he stopped using them for a few nights until he went back to the gastroenterologist who said to keep persevering with the enemas, but they were just making his symptoms a,lot worse so much so he was hospitalized last night with extreme dehydration, temperatures and having loose bowel motions every 15-20 minutes, so now he is off the enemas and they have him on prednisolone which seems late today to be helping, but once again a drug that is certainly not fantastic to be on long term. He had a dietician see him this morning and she is giving him lots of food ideas, he has a few food allergies we think that are not helping his symptoms.

He has lost 7kg in the last 3 weeks and he is malnourished because of these enemas……..his symptoms were mild compared to how they have been since starting on the enemas & the mesalamine. We too were really craped off when we asked the gastroenterologist about diet, he said no this disease has nothing to do with diet, it’s all very frustrating!!!!! We are changing gastroenterologists already and we will be closely monitoring diet and looking at alternatives to drugs to treat this disease. This site has given us lots more info than what any of the doctors he has seen have been able to give so thank you all for your stories and great information.

written by Lynn




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23 Responses to My Son’s Recent Colitis Diagnosis

  1. Don
    Don June 4, 2013 at 11:50 am #

    Hi! It’s amazing how many people are suffering and how many doctors deny that diet has a role in digestive health! There is no magic pill for this condition. I don’t call it a disease because I don’t believe it is a disease. My experience has been similar to your sons. I have suffered so much and all the doctors would tell me is that I will have this for the rest of my life so might as well accept it. I refused to accept it! The SCD diet (Breaking The Vicious Cycle by Elaine Gottschall) is my magic cure! I suggest you start him on the intro diet asap. It is amazing and I am sure he will find some relief when he does. It is a lot of work but totally worth it. There are a lot of SCD groups and websites that can provide valuable answers to your questions. Adam is here for you too. I hate to see anyone go through what I have gone through so if I can be of help let me know.
    Take care,
    Don

  2. bev June 4, 2013 at 2:56 pm #

    Your son is not tolerating the meds. I never really could either. I had an adverse reaction to mesalamine, just like what you are talking about, and that can actually exacerbate UC symptoms, instead of making them better.

    I have had UC for 15 years and the bottom line is that the meds prescribed for UC do not work, or if they do at all, they won’t for very long. Then, it’s on to the next drug, one after another until you are all out of options. Then, the docs talk colon removal.

    I call BS on all of this. I have finally got ‘remission’ (I think of it more like ‘cured’) from a good probiotic and L-glutamine. To get rid of UC, we must first replenish our good bacteria, which we have lost along the way, one way or another. Then, we must heal the ulcers in the colon. For me, fermented L-glutamine did the trick. The two together have kept me cured for well over a year now. The meds never even came close to helping me, and I was on them for 14 straight years! Some people are healing the colon with extra virgin olive oil…it’s all about HEALING the mucosa of the colon.

    Your poor son. I have been there…heck most of us have. We are afraid when we get the initial diagnosis because we don’t know what to do. We listen to our doctors because we don’t know what to do. 14 years of my life that I can’t get back. If he is new to this condition (I refuse to think of it as a disease like Don above),try the probiotics right away. Don’t wait 14 years, like I did. I felt so sick all those years. I am living again.

    Please know that probiotics and the L-glutamine MUST be taken on an empty stomach. No eating for half an hour afterwards at least. That will allow them to do their job without food and digestion interfering. I am not saying stop the meds…just try these two things while he’s still on the meds…he may just get feeling so good and normal, that he won’t need the meds! Imagine that…

    Bev
    :)

    • Joe June 6, 2013 at 10:18 am #

      Hi Bev, Can you take the probiotics and L glutamine together?

      thks

      • bev June 6, 2013 at 1:47 pm #

        Hi Joe,

        I’ve always taken the probiotic as soon as I get up (6am) and the l-glutamine about 11, an hour before lunch. Both on en empty stomach. If you take the L-glutamine with water, then I don’t see why you couldn’t take them at the same time…as long as you stomach is empty and you don’t eat for at least half an hour afterward.

        I take the l-glutamine with a bit of cranberry juice, because I don’t fancy the taste if it just in water, so, because juice is like a ‘food’ I thought I would take it away from the probiotic, that’s all.

        I guess I’m just trying to give both things a real chance at doing their BEST work!

        Cheers
        :)

        • Joe June 7, 2013 at 5:03 am #

          Hi Bev,
          Many thks. Ordered my I glutamine today and hopefully get it tomorrow. I have UC since 1992 and have been on steroids, azathiprine.. but last 6 yrs have just taken Asaco suppos which stopped working last few months for some reason and have tried everything EEVO, diet and now probiotics last few weeks along with pentasa sachet 1g
          Although symptoms aren’t bad, they are not going away.
          All the Best!!

  3. Don
    Don June 5, 2013 at 6:41 am #

    Bev, I tried Probiotics fro GI Pro Health but didn’t really notice any improvement. I also make yogurt and eat that. What other probiotics do you suggest?
    Thanks,
    Don

    • bev June 5, 2013 at 8:22 am #

      Well, I use ULTIMATE FLORA CRITICAL CARE by RENEW LIFE. This particular probiotic is 50 billion strength and is enteric coated so that it does not dissolve until it reaches the colon. A lot of probiotics dissolve in the stomach, and don’t work as well. I guess what I’m saying is that one should take an enteric coated probiotic.

      It really matter, as well, that they are taken on a completely empty stomach with water, and then no eating for at least half an hour afterward.

      Cheers
      :)

  4. Don
    Don June 5, 2013 at 9:29 am #

    Thanks Bev!

  5. Don
    Don June 5, 2013 at 9:39 am #

    I just found out that no probiotic which contains bifidus or bifidobacterium is SCD-legal. I am not going to try Ultimate Flora I guess.
    Don

    • MarkFN June 5, 2013 at 11:27 am #

      Don, I researched endlessly about bifidus as I tried to perfect the scd…yes it is “illegal” but honestly I don’t think even the scd people have much knowledge on this idea. It’s pretty much trial and error, but I’ve read your story and your posts and it sounds like you are considering fecal transplants anyways. I was exactly like you not getting enough results from scd/dietary changes and did ft and I am 100% cured. Go ahead and do it, the need for probiotic supplementation disappears after you establish the correct balance of bacteria in your colon. Your symptoms are so similar to mine, I would be beyond shocked if ft did not cure you completely. Good luck looking forward to hearing how it goes for you. You can look at some of my other posts as I documented it if you need a reference…

      Mark

      • Don
        Don June 5, 2013 at 11:39 am #

        Thanks Mark. That’s very encouraging.
        Don

  6. bev June 5, 2013 at 9:48 am #

    I have heard that before. I am so well on this probiotic that I don’t follow any diet at all, including the SCD. I have never had to follow any special diet when I am well (except eating too much straight wheat). In a flare, certain food made me ‘hurt’ worse than others, but I still never cut anything out completely.

    Too bad…I don’t understand how any probiotic cannot be ‘legal’ on any diet, but I guess it is what it is…

    • Lynn June 11, 2013 at 4:48 am #

      Thanks for all your info, it’s so good for everyone to share their stories…..my son is taking a probiotic and the L-glutamine powder, he is still on a reducing dose of steroids, he wasn’t too bad for a few days then had a big flare up over the weekend, seems to be settling down a bit again. Can you tell me if stress can contribute to UC?

      • slingshot June 12, 2013 at 3:34 pm #

        Lynn:

        Stress indeed is a factor and flare trigger.

  7. UC Family Boy
    uc family boy June 14, 2013 at 4:30 am #

    Second Genome and Janssen colaborate to create a new drug that focuses on microbiome.

    ”Foundational mircrobiome research over the past several years has demonstrated that alterations to the mircobiome are central to the development of inflammation and metabolic disorders”Peter Dilaura, President of Second Genome.

    Will doctors continue to say it has nothing to do with diet when new drugs they will need to sell to pay there wages will be focusing on the microbiome which is influenced by diet?!?!?!!!!!

    Lynn,

    I would go along with Don’s comments. highly recommend SCD, when doctors told me it has nothing to do with diet it was the SCD that offered relief and not there meds. I do both to the best of my ability, it is difficult.

    All else,

    I have been away whilst I battle UC but been reading threads on here. A Little update, I went to a clinic for a consultation for FMT. My plan was to do these infusions at the clinic and do a maintaince programm at home. Unfortunatly, in my opinion the clinic (who know and work with Dr. Brody) only go in slightly and rely on excerise positions to populate the whole colon and only infuse 100g of fecal which is a third less than the program perfected by Dr Brody (who it apparently hitting as high as 80% success rate). For the cost of 10 infusions and the procedure I feel a little hard done by so currently it is an option but not top of my list. Its set up best for treating C. Diff I feel – Ultimately they do not have the fundings in place to offer what some of the big players can offer, hence why the clinic wasnt reaching the success other clinics have. To make matters worse, my dad…who I was having screened for my home infusions failed the healthy donor state. I now try my brother who I am not 100% feeling confident about but he really wants to help, and is willing to cut out and eat healthy.

    Currently I am keeping to SCD and cheat every 3 or so weeks when I feel good, only to relaspe and find remission through diet strictness. I cheated recently due to feeling down about the bad news of my donor and clinic (stuoid I know) so trying to over come my bowels playing up

    I will keep you updated. PLan is still to do the FMT when everything is in place

    • bev June 14, 2013 at 7:25 am #

      Thank you, uc family boy…please do keep us up to date. I just know the FTs will work, if done properly, as you say.

      Cheers,
      Bev

      • Steve July 10, 2013 at 8:22 pm #

        Just thought I’d jump in to the conversation, I almost took a dirt nap 2 and 1/2 yrs ago from bleeding out and a month in the hospital. After lots of testing and travel from Alaska to the Mayo,(the Mayo is not anything special when it comes to IBD, they were a total waste of money and treated me like cattle), I had a diagnosis of UC 6 mths after getting out of the hospital thru Cedars Sinai. I refused the infusions the docs were pushing on me and started as I know all of you have done, reading everything I could get my eyes on. I weened myself off the plethora of drugs pushed at me till I was able to seem controlled with Asocal. A year ago another complication rose its ugly head and I ended up with pancreatitus. The docs default for that was to accuse me of drinking too much alchohol. So, checked off alchohol. I really miss my wifes and my friends home brew beer, full of probiotics. 3 mths after the first pancreatitus hospital stay, the pain came again, another hospital stay and then 3 mths later another attack and a hospital stay. The docs couldn’t blame it on alchohol, I mentioned that maybe Asocal could be the culprit. Boy did they jump on that, and took away the Asocal, the only medicine I was on and now I’m hanging out there and the docs had nothing more to offer me in there bag of tricks and basically ignored me.
        Over the last year I had been reading about the FMTs and brought it up to all the docs I came in contact with. They all said there has been lots of information coming out about the transplants and one of the docs said she witnessed a person with C-diff for over 2 years cured over night. So, I ask them to help me out with doing the transplants and they all have the same excuse of not being allowed to do it and losing their license and so on. It must be a quandry for the docs to know there is a cure for C-diff and UC but their hands are tied.
        Soooo. It came time for me to jump in and do my own FMTs. My family members were unable to be donors, a friend of mine was willing and he filled out a questioner I gave him and passed, no pun intended, with flying colors. I used the fleet enema bottle and just used my own tap water, since that is what I drink anyway. I did a one bottle infusion the first day and was able to keep it in till the next day. Then the following 2 days I doubled up each day on the infusions keeping them in for 24 hrs. Two weeks later I did another double 3 day round of infusions, I was going for 5 days but on the 4th day I couldn’t hold it in. Ok, this is now 13 weeks meds free and blood free. My stools are formed but not real healthy looking, yet.
        I’m following Bev’s advice and ordered the Ultimate Flora and expecting to see some healthy stools down the road. Oh ya, one thing I had noticed was back last Dec. in Hawaii, I ate mostly fresh organic fruits and it made a significant difference as to being able to cut way back on the Asocal.
        I appreciate all of the feedback that everyone has provided and if I can be of help please ask any questions you may have.
        I have also come to the conclusion that we are being poisoned from the food supply system, Monsanto GMOs, in this country. I will be moving somewhere to central or south america where there is access to a more organic food supply and for various other reasons.

        Hang in their Don and do the FMTs and keep doing what your doing diet wise.
        Don’t know if anyone has been following all of the Clinical Trials taking place for C-diff and UC, mostly in the Netherlands a few in the US. Just around the corner FMTs will be a first response to IBDs. http://www.clinicaltrials.gov/ct2/results?term=Fecal+Microbiota+Transplantation+&Search=Search.

        Take Care All,
        Steve

        • bev July 11, 2013 at 8:04 am #

          All the best, Steve!

          :)

  8. Don
    Don June 21, 2013 at 11:47 am #

    I am going to try the Ultimate Flora Bev. I have to do something. The FT I did hasn’t changed a thing yet. I still believe it will eventually but maybe the probiotic will make a difference. I have L-Glutamine also. Wish me luck?
    Thanks!
    Don

    • bev June 21, 2013 at 11:54 am #

      OMG Don…yes, I wish you a lot more than luck!!

      SCD legal or not, I would definitely try it!! Remember, completely empty stomach and no eating for at least half an hour…

      Please, please, PLEASE keep us posted. This HAS to work.

      You do also know that you may need numerous FTs, right? You gotta keep on trucking, Don. Over a year later, and I still improve!! I feel like a completely normal persom with NO UC at all. That did not happen immediately, that’s for sure. I mean, I felt relief fairly quickly, but bms were still loose, then they got firmer and firmer…it took months…now all is PERFECT-O!

      Bev

  9. bev June 21, 2013 at 11:54 am #

    BTW, I meant over a year later…on the probiotic and L-glutamine…I have not had FTs as yet…

  10. Kelly June 22, 2013 at 5:45 am #

    I’ve had UC for 38 years. Only diagnosed 26 yrs ago. I’ve tried everything. I stopped all meds, got myself healthy without them. I believe the probiotics is what helped me! I tell everyone about them. When a flare first starts, I change my diet and continue with the probiotics. At times I have had to go back on Asacol temporarily, but once I feel better, I stop it. Steroids, including Entocort really made me fee horrible, which I believe prolonged my flares.

    I’m not saying for everyone to stop their meds, everyone is different. But I can tell you, I was so sick for years, so thin and weak. Once I stopped the meds I felt better and was able to heal. It took about a year to feel better. I have had about 5 major flares since and hospitalized, which I believe we’re my fault due to poor diet, and not paying attention to the pain and symptoms. It’s so important once the first symptoms appear, don’t ignore them. I haven’t been to the gastro in years! I let my pcp care for me and take care right away.

    Probiotics are the key for me. I have no particular brand, I buy whatever is on sale. If I run out, I immediately start having symptoms. So it works for me.

    • bev June 22, 2013 at 7:20 am #

      EXACTLY Kelly!

      I was thin and generally sick for 14 years on the so called ‘maintenance’ med, asacol…it’s a scam! I wasted 14 years of my life, ill as hell, that I CANNOT get back. All because I trusted what the doctors told me. ‘You have a disease that you will have forever…you must be on some sort of UC medication forever’….B.S.!!

      Since I discovered probiotics I am 100%. I never would have believed it had it not happened to me…

      Yes, it did take about a year to completely straighten my flora out. I never see a GI any more either. Happy Days!

      Bev

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