Ulcerative Colitis Tips


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A Very Concerned Friend: Am I Worrying Too Much?

Introduction:

I am an 18 year old girl living in Toronto, Canada. I personally do not suffer from ulcerative colitis, however; a very special and close friend of mine does and I constantly surf this website searching for support and answers, which I find very helpful. He has been diagnosed with colitis for a year and a half, starting from Jan. 2012.

Some more about me:

We both reside in Toronto, Canada. He’s a pretty active guy, very into golf, swimming and basketball and extremely competitive when it comes to the two of us on the court. He’s extremely intelligent with a headstrong dream of attending Western University and then becoming a lawyer.

My Friend’s Symptoms:

Rapid weight loss, fatigue, immense pain, constant bathroom trips with blood and mucous

A Very Concerned Friend: Am I worrying too much?

I have a friend who is 18 years old, that has been suffering from ulcerative colitis for approximately a year and a half.

Just like most other patients, he has been through the ups and downs of trying different medications. One of the first medications that doctors prescribed to him was Mezavant, but after several months of taking Salofalk and Mezavant in pill form, he found very minimal to no signs of improvement whatsoever.

The doctors reduced the amount of Mezavant taken and eventually took him off the pill completely, only to put him back on it a couple months later. Blood tests have shown that his liver was starting to form fat and one of the questions I have is, is this because of the Mezavant?

When he was on Mezavant, the blood test would show that his liver was doing poorly and then for the two months that he was not on the pill it went back to substantial levels, but when he asked the doctor about this, the doctor replied that the medication had nothing to do with this. Another thing is that for the past two months he has been trying out LDN (Stefan’s story about LDN – click here), which I found out about on this website. He has completely cut off Mezavant and Salofalk for now and has been taking 35 mg LDN every night.

In addition, he has been taking tumeric root and milk thistle (for the liver). Because I see him everyday I haven’t noticed that he has been losing alot of weight. He is 6’5 tall and started off being 170lbs three months ago and his weight has dropped to 155lbs, is this due to the LDN? What can he do to gain weight? 2-4 times a night, at least. I read that chamomile tea is very relaxing and could help with the sleeping pattern, I’m not sure so if anyone has any advice/experience with teas and remedies to sleep better, please let me know. Moreover, I read that LDN was supposedly good for helping you sleep well, but for him he has been waking up constantly during the night and this will make him very tired the next morning. I would say approximately His gastro doctor isn’t able to meet with him often and can only see him once every 4-6 months and his family doctor isn’t very trusting or experienced when it comes to colitis so he hasn’t been seeing him regularly as well. Is this a bad thing to be doing? And lastly, he is planning on taking a trip to Cuba for a week and I’m worried that the food and stress of travelling will do a great amount to his colitis.

What are some tips and things that he can do to assure a safe trip? Right now, my biggest concern is the weight loss first and then the loss of sleep second.

Medications:

Mezavant, Salofalk, a mild steroid either predisone or cortisone. Stopped all of that and is only taking LDN, milk thistle and tumeric root pills.

written by Naff

submitted in the colitis venting area




22 Responses to A Very Concerned Friend: Am I Worrying Too Much?

  1. Mike from Ohio
    Mike H June 17, 2013 at 6:38 pm #

    Tell him to find a good GI and a good surgeon, even if he has to come to the US. It will not go away on it’s own. I was losing weight at a rate of 1 pound per day when I decided to get it all fixed by surgery.

    Mike H.

    • Naff S June 17, 2013 at 6:57 pm #

      Thank you for your suggestion, I just feel like having surgery at such a young age is too much. Right now, we’re looking for all other options before surgery. What meds were you on?

  2. Jen From UK
    Jen June 18, 2013 at 1:56 am #

    Peppermint tea and ginger chews/tea/anything ginger has really helped me with nausea/dizziness and sleep problems. I eliminated caffeine too and saw a drastic improvement and any sweeteners at all. SCD has helped to a degree. He needs a good support like you! My GI prescribed Imodium/loperamide and codein for the frequency and pain. They slowed my weight loss. I really hope the others respond with their positive stories, fecal transplant, Differebt diet, probiotics and l glutamine. I can’t really advise on the success of those as the ones I’ve tried haven’t ‘cured’ me though they have in the main been positive experiences. I wish him the best in finding what works for him. You’re a great asset in his fight x

    • Naff S June 18, 2013 at 5:35 am #

      Thank you so much for your help. I read alot about peppermint tea and also chamomile tea (for sleep) have you heard any positive responses from that? I know chamomile tea doesn’t have any caffeine, so that’s always a good thing. A couple months back he bought a pack of imodium, but never used it because on the packet it read not to use if you’re suffering from uc, so are you sure it’s safe? I’m kind of skeptical.

      • Jen From UK
        Jen June 19, 2013 at 1:14 pm #

        I found chamomile more diuretic and dehydrating but the ginger has some anti inflammatory properties too. I live off peppermint tea and chewing ginger! My doctors don’t believe immodium increases the risk of mega colon more than the risk a uc sufferer without immodium BUT that’s only what my docs says I have read conflicting advice. If I don’t take it my meds just go straight through :-( x

        • Naff S June 20, 2013 at 4:12 pm #

          Thank you so much! I’ll get him to try the peppermint tea for sure.

  3. Joe June 18, 2013 at 2:37 am #

    Hello, your friend is lucky to have the support from someone like yourself. I was diagnose with UC about the same time as your friend. About this time last year I was hospitalized because of an extreme flare-up. I was bleeding badly and losing weight. Here in NZ we have the metric system, so I am about six foot four inches and dropped down to 55 kilograms. Anyway, long story short – surgeons wanted to remove my colon, said I’d be dead if I didn’t have it out, but I could see I was making improvement once I stopped eating the hospital food. Told them the “stick-it” self discharged myself, and went home. While I had to taper off the prednizone, and other crap they prescribed me, I researched diets. The SCD is okay, but the nuts and yogurt messed me up. Basically the caveman diet – Paleo – has help get me into remission. No sugar, honey, grains, alcohol, dairy, red meat or anything fun to eat. All I live on is fruit, organic chicken, salmon and some vege. Probiotics help and keep stress at bay. No blood loss and back to normal weight. Keep the faith and be strong – this insidious disease can be beaten. Peace…

    • Caroline
      Caroline June 18, 2013 at 6:42 am #

      Joe, good for you! I too am having great success with Paleo – I couldn’t do the nuts or dairy thing either. Paleo (but lots of red meat for me!), a good probiotic, L-glutamine, and trying to have less stress have all helped me so much. I am hoping to start weaning off of the Apriso in a few months!

    • Naff S June 20, 2013 at 4:12 pm #

      Hi Joe,

      • Naff S June 20, 2013 at 4:17 pm #

        Thank you so much for replying, firstly, what probiotics are you taking and what meds are you on? About this diet, I’ll look into it. There are some things he doesn’t eat, like sugary sodas and not too many sweets. I try to get him to eat alot of organic blueberries because I heard they have anti-inflammatory properties.

  4. bev June 18, 2013 at 3:58 pm #

    Hi,

    LDN can most definitely cause sleep disturbances. He can have the dosage changed (lowered) which may help.

    I wish I had a great concerned friend like you!

    Cheers
    :)

    • Naff S June 20, 2013 at 4:27 pm #

      Thank you Bev! Maybe we’ll try doing 3mg instead of 3.5 for now.

      • bev June 20, 2013 at 4:28 pm #

        :)

  5. prince choudhary June 18, 2013 at 6:55 pm #

    bev which probiotic u r using plzz tel me dear.

    • Tim123 June 18, 2013 at 7:46 pm #

      I am using ultimate flora critical care 50 billion. Bev recommended.

    • bev June 18, 2013 at 9:45 pm #

      Ultimate Flora Critical Care by RenewLife, just like Tim1236 says above…thanks Tim!!

      Cheers
      :)

  6. Amy B. June 19, 2013 at 4:35 am #

    Hi, I am 37 living in St.Louis,Mo! I have had bowel problems since I was 20 yrs old! I was not diagnosed with Ulcerative Colitis until I was 25 and pregnant with my first child! For the first 5 yrs until getting a diagnoses I lived on Imodium, sometimes I took as many as 10 of them a day, they are not going to hurt him! I’ve been through many medications throughout my 17 yrs, the main thing is make sure your friend isn’t getting depressed, UC’ers go through depression a lot! Second, if one med. doesn’t work try another one, every person is different in how they respond in regards to their UC.
    If a Dr. Isn’t giving him the answers he desires, change Dr.’s! It is a trial and error disease! I have had 4 Dr.’s since I have had this disease, not because they were neccessarily bad Dr.’s just not educated enough on my disease! I am now on an IV every 2 month’s of Remicade and also take 50 mg of Imuran, and 100 mg of Allopurinol! With this regimen, I have been in remission for about 5 yrs, only having an occasional problem when I eat something I shouldn’t! When I started this med combination I was taking 3 Imodium, now I am down to none! I was using the restroom at least 3 times a day, and defacating on myself at least once! I haven’t defacted on myself now for 5 yrs! Keep his spirits lifted and get him a new GI Dr. !This is my best advice for his improvement!

    • Naff S June 20, 2013 at 4:31 pm #

      Hi Amy,
      We bought a box of immodium, just in case, but he refuses to take it because of the UC warning. After reading all these messages, I’m sure he’ll feel safe to try it. I think one of the most essential thing to do first of all is get a good GI doctor. Congratulations on being on remission :)

    • James Turner June 20, 2013 at 11:12 pm #

      Amy, I’m pleased to know of your success with Remicade. It was a life changer for me very positively at first. Unfortunately, I became one of the people with severe case of UC that became allergic to it. I’m still searching for something to replace it. I wish you well. Take care, and God Bless you and all others diagnosed with UC or similar illnesses.

  7. Joanna June 20, 2013 at 9:00 am #

    Yeah insomnia is a side effect of ldn. I rarely slept for the two and a half months i took it. Definitely not a drug i liked, thats for sure.

    • Boba January 21, 2014 at 6:59 pm #

      Hi Joanna,
      I was just wondering were do you live. I live in Toronto Canada.
      I have uc and anal fistula and heard great things about ldn.
      My doctors won’t prescribe it for me.
      So I you to live in the area please respond .
      Thanks.
      Boba

  8. cherripai June 18, 2014 at 3:51 am #

    I’ve had uc for about 4 years. I’m taking mezavant, puri-nethol and saloflak enemas. I’ve mostly tried different enemas and saloflack are the best. Easy to administer and no pain or the need to go toilet at all.
    Tho I do find I don’t have as bad case as others. I have had the runs, cramping, bleeding and mucus in the past.
    Before getting my uc under control I was anemic and the only thing that cured it was an iron infusion. I don’t have any special diet changes, either.
    So basically I recommend enemas. As inconvenient as they are, they’re better than any side effect pill.

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