Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

My Son’s Story

Intro:

I am a mother to 3 wonderful children and I love them with all my heart. My son has suffered with ulcerative colitis since he was 16 and is now 22. We live in Sydney

My Son’s Story and His Ulcerative Colitis

I have been looking at this site since the beginning of this year and it has been my strength to read the wonderful stories and learn more about diet and other supplements to treat ulcerative colitis.

My son was originally diagnosed with proctitis and we were told that he is lucky as this will be cleared up with the enema which was prescribed by his GI (enema being salofalk). Prior to being diagnosed my son’s GP ordered blood tests, which came back as perfect, including his platelet count at 357,000. The first week after starting to use the enema, he started to bleed more and bowel movements increased and kept visiting his GI for help. He suggested to add Vsl #3 and try granules as well. His symptoms were getting worse and he had a couple of huge bruises in his arm. Blood tests ordered and all of a sudden he has a platelet count of 6000 and is anaemic. We were booked into a haematologist by lunchtime that day and hence began a year long struggle with his platelets, including high doses of prednisone and endless discussions to have his spleen removed, which, thank goodness I was in charge in those days and would not allow it unless it was the only option left. Eventually, he went into remission with ITP, with the help of mabthera. Colitis symptoms improved when he eliminated dairy and gluten from his diet and whenever he accidentally has either if these his symptoms increase.

He hasn’t suffered with very much pain but his bowel motions increased, diahrea, blood (lots) and most days he would go about 20 times. This happened when pentasa was added. I believe he reacted to mesalamine and developed ITP and his symptoms were exasperated by this drug.

This year he had another colonoscopy and colitis had spread to 75% if his colon and was prescribed prednisone, double doses pentasa and 6 mp. I was horrified and there was nothing I could do to stop this cocktail of meds as my son being a 1st year medic al student would not listen to me. But he did agree to start taking Bev’s supplements l glutamine etc and decided to refuse the prednisone and 1st week into taking 6 mp his blood test showed his levels (I think creatinine) were very close to renal failure and was told to stop taking he pentasa immediately! doctor said the damage to his kidneys would have been irreparable. About 2 weeks in he started to have formed bm, minimal blood, mucus disappeared and was well in his way t a normal life again. He is on 50mg 6 mp but started on 75 mp which blood results showed he has trouble metabolising it (always something with medication for him).

About 3 months ago he stopped the supplements and for the last month he has had mild colitis symptoms, 1-2 bm, mucus. Last week he went back onto Bev’s supplements and symptoms are back to normal, except for some mucus, which I know will go in time. I believe eliminating gluten and dairy was an important step in helping I’m and I believe mesalamine was a disaster for him and this drug should be monitored more closely in patients as there are some serious side effects as in my son’s case ITP, exasterbation of colitis and on his way to rebal failure (which was thankfully picked during a routine blood test for 6 mp). I do not like 6 mp as he seems to have problems with these drugs p, but at the only doctors visit i was allowed to go to today, the GI said he will be on it forever. Also, doctor said FMT clinical trials are starting in Melbourne and Sydney for ulcerative colitis. Prof Barody clinic is the only clinic to perform FMT’s here and I have booked my son to see him next May – currently a year waiting list!

Thank you, Adam for your wonderful site and I hope that this story will help others and make them aware that side effects do happen from the medications and regular blood tests are very important. Sorry for the typos,!

written by Mary




10 Responses to My Son’s Story

  1. bev November 24, 2013 at 2:58 pm #

    Hi Mother Mary,

    So, is your son in remission at the present time?

    I am happy to hear that what I take is also helping him somewhat.

    Bev

  2. Mary November 24, 2013 at 4:03 pm #

    Hi Bev,

    The day he started taking 6 mp he also started taking Vsl#3, l glutamine and vitamin d3., astaxanthin was added a couple weeks after as I had trouble finding it here, I know this worked because 6 mp takes 3-6 months to work and he had started to improve within days . He showed a marked improvement as soon as he stopped taking pentasa a week after starting 6mp , with near perfect bowel motions, small amount of blood and no mucous or cramping, he had spent years with very loose bm’s, many visits to the bathroom etc, so this was incredible. Also he has tried vsl off and on and it did make a bit of a difference, but nothing like this change., he was in remission! This was in March. By May, he dropped the vsl, as things were perfect but kept the other supplements. In August, he dropped all supplements and by end September, things started to go south for him. He also, developed an ulcer from taking prednisone during his ITP years . Anyway, he occasionally feels nauseous and vomits – i know it is the 6 mp as I felt he ulcer cleared up from taking l glutamine. S, he went o the GI and he ordered another endoscopy. This showed that everything is perfect and the ulcer is gone but still take medication for it (somac) – why take meds for something which has healed! Early November he was in a mini flare 3-4 bm’s, blood, mucous no cramping though. He went back onto the supplements, but decided t take a probiotic called polybac 8 instead of vsl. Things settled but still a bit if blood and mucous. GI visit in mid November and doctor puts him on colifoam enema and from the first night taking it (5 nights) , h had cramping, lots if blood, gas. He added 2 drops oregano oil to juice with manuka honey and he is perfect, (wiyhin days), 1-2, bm, no mucous, cramping is gone, just a tiny bit of blood still. The other day he didn’t go at all, which was incredible and no discomfort. So I think the supplements have made a huge difference for him and i cant thank you enough for that Bev. i believe he needs a stronger probiotic like vsl, and I do not think he is getting a great deal from the meds. In fact, he started to flare by just taking 6mp alone. And i believe tge supplements kept things manageable second time around, but 6mp had kicked in after 3 months and the colifoam caused further problems. It is hard to read back on what i am writing here, so I do hope it makes sense. Also, I do not know where the Mother Mary name came from, Adam, can you change my name to Mary please?

    • bev November 24, 2013 at 4:59 pm #

      So sorry Mary!! I will just call you that:)

      I really believe that for some of us, the meds do nothing but harm. Our bodies simply will not tolerate them. The whole 13 years that I was on meds, I felt awful…nauseous, painful gas and cramping, anemia, horrendous urgency, hair loss…I could go on and on. When I would complain to the doctor, he would just up the dosage…making things even worse, if you can believe that! At the end, he was recommending remicade and Imuran which I refused, on the basis that I know my own body. After researching those drugs I just knew they would make me sicker, perhaps even be the death of me. I really do not tolerate medications very well at all.

      I think a strong probiotic is key for your son, just as it is for me. It is THE number one thing in my concoction! That Ultimate Flora Critical Care by RenewLife. You know the drill…completely empty stomach and then nothing to eat or drink (except water) for at least half an hour so that it travels to the colon alone and can work best. Also, I will NEVER stop taking them, even when I have been tempted to because I feel so great or…lol… to save money (they aren’t that cheap:))

      Cheers to you Mary:)

  3. Mary November 24, 2013 at 9:11 pm #

    Thank you Bev,

    My son has experienced pretty much the same issues as yourself , and a how lot more. What really annoys me is that medical profession do not want to tap into the various causes of uc for their patients – too hard basket., When patients try to tell the doctor that a particular drug doesn’t agree with,them, their response is that it is the colitis causing this and the drug is increased. When the condition has worsened, another drug is added and another after that, but the initial drug is still part of the mix. If it wasn’t for the blood test, he wld still be on pentasa (so grateful that he is off that drug at least). When Liam had the colonoscopy this year, a month earlier, pentasa dosage was doubled and he was put on prednisone 40 mg, down to 20mg at time of colonoscopy. The prednisone did a good job masking the symptoms, because he was certainly experiencing remission and yet, the colonoscopy showed severe inflammation right through to the transverse part if the colon! When we went to the GI the other day, and really we were there because we are due to travel overseas next week, although his symptoms were only smouldering, the doctor prescribed colifoam (steroid). I said judging by his condition at time colonoscopy whilst taking prednisone, why would you give him another steroid? Response, all of a sudden his condition was mild
    , which is completely opposite to what we were told straight after his colonoscopy. We were told, he must take 6mp because the inflammation is quite severe. My husband is a great guy, but he doesn’t do any research and my son is only going to listen to doctors at this stage, because he is in his first year of medical school. I know he doesn’t take the supplements on an empty stomach and takes them during breakfast, but I am grateful that he does take them – I am sure he will figure it out for himself! Also, my husband has shingles at the moment and I remember the GI saying Liam shld try to avoid people with shingles when using colifoam and 6mp! Just another thing to worry about with medicatiiin.
    I know medication is an important part of treatment for a lot of people for uc, but when it causes issues, it could do more harm than good. I know that balancing the gut flora is important in my sn’s case, but his doctor is on the fence with probiotics and says his patients do not like vsl 3 because it makes them feel sick – so liam won’t take vsl #3 anymore!

    Also, I asked him does pentasa exasterbate uc and he said yes, but not in Liam’s case – I know that it did!

  4. bev November 25, 2013 at 6:39 am #

    This all rings so true, Mary. Every time I complained about feeling horrible, the doctor would insist that it was the UC, NOT THE MEDS, that was causing me to feel that way. Then, it would be time for an even higher dosage OR a more powerful drug….what a joke it all is and we don’t even know what’s happening at the time. Only when we look back over our years with UC and the so called treatments, can we clearly see just how we are all dealt with.

    A travesty…

    • Bev November 25, 2013 at 3:38 pm #

      I could not agree with you more, Mary!
      If we all had the knowledge that we have now I think a lot of us may have ‘skipped’ some of the meds…and the doctors are only doing what they are supposed to do. No, they are not very open to new it natural treatments either, which grinds my gears as well!

  5. Mary November 25, 2013 at 3:26 pm #

    Thanks to this wonderful site, which offers many options for people to take on board with their uc, we can visit doctors with knowledge and try to avoid being misled by them. They are following a protocol with their line of treatments, but they do not seem to be listening to patients who talk about natural methods of healing, diet etc (at least in my son’s doctor case) and that bothers me. A site I used to go onto when he had ITP had a wealth of knowledge and the people made a lot sense, like here. Anyway many people told me to avoid spleen removal and try other options which i listened to and everything turned out well. Mind you the drug they gave him is quite intense, but much better than not having a spleen! Spleen removal is now the last option instead of one of the first in ITP treatment! Also, whilst probiotics are expensive, in the long run i think it is cheaper. If Liam was monitored closely with the medication he was on, put on a good probiotic and sent to a nutritionist to sort out his diet and food allergies, I believe he would have been in remission years ago. We would have avoided hospital stays, endoscopies, many specialist visits etc and not to mention the stress and worry put on all of us over the years! Thank you so much, Bev for listening to me vent, this year has been horrible and although my son is the one who suffers, it breaks my heart to see it.

    • Bev November 25, 2013 at 3:39 pm #

      As for venting….this is the place to do it! Don’t ever worry about doing it….I do it all of the time…lol!

      • bobo kijac March 17, 2015 at 9:11 am #

        Hi Mary,

        What is the site that helped inform you about ITP.

        I have been recently diagnosed with it and its definitely connected to my UC which has been fine after a recent flare up. My platelets decreased out of the blue when all I have been on is mesalazine since my diagnosis of UC in April 2013.

  6. Mary beiglari March 18, 2015 at 2:57 am #

    Hi Bobo, sorry to hear you are experiencing low platelets on top of dealing with ulcerative colitis. My son developed low platelets soon after starting mesalamine. He had a blood test a week before his uc diagnosis and his platelets were 357,000, so we know that his platelets were fine. Soon after his platelets were very low and he was anaemic! . The doctors never made the connection with his medication and i eventually decided to get a product information from the pharmacist and low platelets was listed as a side effect. It also made his colitis worse and this is also a side effect of the medication. It is worth getting a product information as you may be allergic to the drug. My son sees a new gastroenterologist who confirmed he was allergic to mesalamine (possibly the sulphites used to make the medication). He is on 6 mp (50 mg) which has never helped him. The only medication which has given my son relief is Rifaximin (a non absorbable antibiotic which targets the colon). his new gastro believes colitis is bacterial and my son’s recent colonoscopy confirms he is on the right track, as his colon is clear of colitis.
    My son also takes 1 Astaxanthin and 1 scoop l glutamine daily. (See Bev’s story).
    Bobo, I hope this helps you. Also, i used to read(never posted) a site called Platelet Dusirder Support Association which is a very good site (quite similar to ihaveuc). All the best

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