Ulcerative Colitis Tips


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HELP! Consultant says Immuno-Suppressant Drugs next step!

Intro:

Hi, I’m Bonny, 36 years old, married, 3 children. I was diagnosed with ulcerative colitis last year and I’m still trying to get on top of things!

Some more about Bonny:

I live on Anglesey, a lovely island just off North Wales, UK. I’ve always enjoyed the outdoor life and sports but find those things difficult to do at the moment. I’m still playing netball as its held in a sports hall near some toilets!!

Symptoms:

A huge amount of blood pretty much every time I go to the loo, whether its a poop or a wee. Some urgency but that’s not too bad …. at the moment. Couldn’t even think about doing a sneaky fart unless on the loo! Sorry to be graphic, but really good to share with other people!

Bonny’s Story:

I was diagnosed with proctitis/uc Summer 2013. (I had an episode of this 2 years earlier but didn’t realise it was uc. That was cleared up with Colifoam) I’ve been taking oral mesalazine plus mesalazine suppositories. (I’ve tried Colifoam and Salofalk since last year and they didn’t work.) Also take Laxido which is to loosen stools as constipation is often a problem. Over this summer, I was given prednisolone, which amazingly worked and gave me no side effects! However, within a week of finishing them, the signs of uc were coming back and I’m now in a full flare up. I’m gluten free and follow the Fodmap diet. I’ve also reduced my carb intake a lot. I eat A LOT of veg as constipation is a problem (anyone else eat a lot of veg for constipation and proctitis?) I’ve been taking a probiotic, but just increased that massively by starting the ultimate flora 50 billion probiotic. I’m really not sure if its actually increased the amount of liquid (blood / mucus) I’m passing. Also taking fish oil. Just bought l-glutamine and turmeric to try.

I’m seeing my consultant next week and they want to put me on the immuno-suppressant drugs…azathioprine? To anyone who can help, I’ve got 2 questions…1) ANYONE KNOW ANYTHING I CAN DO TO AVOID GOING ON THESE DRUGS PLEASE??? and 2) anybody have any good stories about being on these drugs?

I’m really concerned about going on such hefty drugs. I just think I’ll end up not knowing if I’m ill from colitis or from all the drugs I’m taking. I’m worried about all the side effects I’ve read about these drugs. I’ve really been trying to fight this myself, alongside the drugs, but maybe I need to do more.. the SCD diet, no carbs at all, different supplements?? I would be so grateful for anyone’s advice to get out of this flare without going on these immuno-suppressant drugs.

Medications / Supplements:

Apart from taking the prednisolone for 3 months, I have lived with a flare up since Jan 2013. Therefore, I don’t really feel anything is working, considering I can’t keep taking prednisolone. Any advice would be great as I’m fed up.

written by Bonny G

submitted in the colitis venting area




32 Responses to HELP! Consultant says Immuno-Suppressant Drugs next step!

  1. Sandi September 29, 2014 at 10:25 am #

    hi Bonny
    I have had UC for 7 years and the only thing that has successfully got me in remission and enabled me to stay there has been Azathioprine. The only side effect I have noticed is a rosea type rash on my face when I started taking it and when they increased the dose, but on both occasions the rash went away. I also take L Glutamine, ultimate flora probiotic, aloe vera capsules, folic acid and a vitamin b complex and can honestly say that this is the best I have felt in 7 years. Good luck

    • Bonny Greenhalgh September 29, 2014 at 12:42 pm #

      Hi Sandi, Thank you for your comment. You’ve reduced some of my concerns and its nice to hear positive things about azathioprine. Out of interest, when do you take L-glutamine during the day, as I’m still working out the best way to take all these supplements?!

    • Ella September 29, 2014 at 1:49 pm #

      Hello, read about fecal transplant. Start SCD diet,. Blended food to decrease digestive stress., rest, LDN, l- glutamin. The bigest help could come from fecal transplant, but first long term antibiotics to calm inflomation down.
      good luck, hope my info helps.

      • Tom
        Tom September 29, 2014 at 2:03 pm #

        Ella, antibiotics would be the worst thing to give a UC patient. It’s not an infection?

  2. Tom
    Tom September 29, 2014 at 10:28 am #

    Hi Bonny

    First of all, why do you think you are constipated?

    Tenesmus (please google for correct explanation) plagues most UCers and can make you think you are constipated. Taking something for constipation when you aren’t actually constipated could really cause problems. Have a look at an explanation for tenesmus and comment back here.

    Tom

    • Bonny Greenhalgh September 29, 2014 at 12:45 pm #

      Hi Tom, thanks for your reply. I’ve never heard of tenesmus before so just had a read about it. I occasionally have this but I know that I’m constipated as I have had several x-rays on my abdomen which showed it. Plus, and I can only say this to other uc-ers, I know when not enough is coming out in comparison to what I’ve eaten and taking an extra laxido and eating extra veg soup gets it out!

      • Tom
        Tom September 29, 2014 at 1:58 pm #

        Bonny

        The constipation makes sense but usually only appears with proctitis only. Is your diagnosis still proctitis as Azathioprine would be like taking a sledgehammer to a nut.

        If i’m brutally honest I don’t believe probiotics or diet have any more of an effect than placebo. I recently read a medical journal about how most probiotics do not even make it to your small intestine let alone 30ft further along to your colon.

        I had a colectomy last year in May so I had an ileostomy formed and was left with the last 20cm of colon/rectum intact. No food was going through this part of large intestine and for months i lived a happy existence. 3 months after operation, bleeding and mucous started and it was hell, all the while, no food was going through it so this is why i do not believe diet modification is anything more than a placebo.

        Have you been prescribed pred foam? Its basically prednisolone but up your bum. I know of a number of people who have had great success with these as it is a more direct approach than the tablet form.

        As we are both in the UK and I have tried every drug apart from Remicade, I hope to give you some pointers :)

        • Mary October 9, 2014 at 4:43 pm #

          Dear Tom,
          My son was diagnosed with proctitis 7 years ago. Two months into starting treatment with mesalamine he developed a number of issues, the major being ITP (low platelets) and an increase of his colitis symptoms. He has been helped along with probiotics, l glutamine, astaxanthin and eliminating gluten, dairy, soft drinks, alcohol from his diet as well as processed foods – leaving him to follow a healthy diet. These measures softened the effects of the colitis flare. Pentasa was finally stopped about a week after he started 6mp as his blood levels were showing signs of renal failure. After this he immediately felt a change in his symptoms. Blood returned to normal, no longer has ITP and bm’s went from 15-20 to 4-6 daily. He decided to stop all supplements and within weeks he went into a major flare and he struggled, even with prednisone.
          We went to a different gastroenterologist who prescribed a non absorbable, antimicrobial antibiotic which targets the colon and is off prednisone (still takes low dose 6 mp), takes a scoop l glutamine, astaxanthin and has perfect bowel motions, swims 2000 metres most days, puts in a long day at University, socialises, eats very healthy food (doesn’t feel he needs a probiotic because of this), no longer has anaemia (had a number of transfusions over the years) and it is great to see him happy!
          His new gastroenterologist believes ulcerative colitis is caused by bacteria and is not autoimmune, which judging by my son’s recent progress, makes a lot of sense!
          Everybody seems to be different in what works and doesn’t and I wish you not only 3 months reprieve, but total remission.

          • Tom
            Tom October 9, 2014 at 11:30 pm #

            Mary

            It’s great that your son is in remission. Has it progressed from proctitis at all as it unusual for prednisone or stronger meds to be used?

            I’m not sure where his gastroentereologist is coming from however as you can’t say, “in remission, takes immunosupressant therapy drugs but it’s not an autoimmune condition” in the same sentence

          • Mary October 10, 2014 at 3:59 am #

            Hi Tom,
            My son was diagnosed 7 years ago with proctitis. Not long after he started using salofalk enema (about two months), he became worse, then gastro also prescribed mesalamine granules as well. We noticed one day that my son had large bruises on his arm and doctor ordered blood tests. His platelets were at 6000 (very low) and was quite anaemic. Three months earlier before he was diagnosed his GP did a blood count and his results were perfect (platelets were 357000). We put our faith in the doctors because we were scared and didn’t know what was happening. He was then put on prednisone to get the platelet count up. It helped a bit for both conditions, but the problem was still there. As mentioned before, this is the point where dietary changes were put in place and , Vsl 3 added (he only took this for 6 months) and my son was able to function, still not feeling great and developed a duodenal ulcer. He also had Mabthera for the platelets which worked and they gradually went back to normal. Changed gastros and he prescribed pentasa (another mesalamine) and kept the salofalk going as well and nothing really changed.. 4 years later had another colonoscopy and 75% of his colon was now inflamed and endoscopy showed ulcer has disappeared (that was the good news) 6pm was introduced and on the same day restarted probiotics and added l glutamine and astaxanthin. It was a routine blood test for the 6 mp a week later which showed he was heading for irreparable renal failure and pentasa was stopped.
            He was feeling pretty good for 6 months and then stopped all supplements and he started to flare a short time later. Prescribed colifoam and he went into a major flare. We were about to go on a family holiday to the States and he agreed to try oil of oregano and reintroduce l glutamine and astaxanthin just to keep me happy, his bowel motions improved and he was able to travel. I believe this kept him well for most of the trip. He stopped taking the oregano about 10 days before the trip ended as he couldn’t face the taste anymore. He went into another flare, 50mg 6 mp is only level his body can tolerate and so he was put back on orednisone. May this year he had an appointment with a wonderful gastroenterologist who put him on the antibiotic Rifaximin (antibiotic) and he kept improving and is now feeling the best he has felt in 7 years and is off prednisone completely. It is my son’s choice to stay on 6 mp for the time being, as he has been through a lot! So best to keep things as they
            are. The way forward will be an FMT in pill form when it becomes available. Also, whenever he was prescribed cipro, his colitis improved during that period.

  3. Alison Tucker-Marchenko September 29, 2014 at 10:41 am #

    I have been on Azathioprine for Crohns disease for 15yrs now with no bad side effects. The only suggestion is to have regular blood tests and be careful in the sun. UC is an immune disorder and NO diet has been proved to help. Not taking the meds you need could lead to surgery and an Ostomy. This will still not cure the UC and other manifestations like fatigue, night sweats and joint pains may still be present

    • Tom
      Tom September 29, 2014 at 1:47 pm #

      +1 Alison, well said. I sometimes bash my head against my screen about what i sometimes see on this page

    • Emily October 2, 2014 at 11:01 am #

      Thanks for posting this. I always wonder if the people in remission through diet alone were: 1. correctly diagnosed and 2. actually in a true remission.

      Diet modification and supplementation has never helped me much. I actually became fairly ill going the natural route. I also had a lot of guilt/shame that I couldn’t “fix” my body with lifestyle changes. I do still take fish oil omega 3, probiotics, and a multi-vitamin, but I would probably take those without the colitis as they are good for overall health.

      My body needs drugs to function. I’ve made my peace with that. I have full blown colitis- the whole colon. I’m on 6MP, Asacol HD, and when needed Rowasa enemas. I’ve had great success with this combination. 6MP is the immunosupressant. I take my meds as prescribed and usually am (very very very) lucky to experience long periods of symptom free remission (5-10 years). I know I will one day need to move to biologics. Maybe even surgery. I will cross those bridges when I get there.

      When I started 6MP it made me ill (don’t take with food!) and gave me a rash (went away). I do seem to be more sun sensitive, but I’m fair skinned and live in sunny California so that is nothing new. Don’t be afraid of the immunosupressants! For me they’ve worked well. I am thankful they’re available.

  4. Roger W
    Roger September 29, 2014 at 11:33 am #

    i think you’re on the right track. I follow SCD and the supplements you mentioned. I get probably 1 trillion cells of probiotic between my home made yogurt and a packet of vsl#3 each day. I’m a year and a half with no symptoms and only taking a 5-Asa. I’ve had some gut issues lately but I believe they’re linked to my recent diagnosis of Lyme disease (lucky me- UC and Lyme!).

    Azathioprine scares the hell out of me.

    • Bonny Greenhalgh September 29, 2014 at 12:56 pm #

      Hi Roger, Lyme disease sounds a nightmare on top of UC. That’s not good. Did you start the SCD when you were in remission or during a flare? I’m thinking of trying it now, but I’m worried about losing more weight as there’s not much left of me now! I am really worried about taking azathioprine because I feel I’m getting further and further away from what is normal for my body. I would much prefer to do this naturally but I’ve got to stem the bleeding somehow.

  5. Bonny Greenhalgh September 29, 2014 at 12:49 pm #

    Hi Alison, thanks to you too for your reply! That’s interesting about the azathioprine not helping with the side effects of uc… I hadn’t even thought of that. I know I’m very lucky at the moment that I only get mild joint pain and the tiredness is up and down. It’s just the bleeding which I’m worried about and something needs to sort it out. Do you follow any diet or do you eat what you like?

  6. Camille M
    Camille September 29, 2014 at 1:50 pm #

    Bonnie,

    First of all, most people with constipation issues simply have a magnesium deficiency. I realize it is a different situation for us UCers, but it is a good supplement to take because our food supply is practically void of it. To determine how much you need (everyone absorbs it differently) you start with a small dose -200-400 mg and increase a little each day until you have loose stools, then back off to the last dose that did not produce loose stools.

    Make sure you are taking iron while you are bleeding. I took a plant based tablet because the regular kind made me sick.

    Second, since your immune system is out of whack, it may take a suppressant like azathioprine to calm it. It takes 3 months before you see results. I have recently weened off of it after almost 4 years. I take low dose naltrexone, which acts like a reset button to your immune system while you are sleeping. I believe that it is the main reason I am in remission now. Side effect warning: I felt extremely fatigued on 400 mg of azathioprine and did not notice that abating until I decreased to 150 mg.

    Last thought-any grains are like sandpaper in my bowel to me, so I stay off them.

    Best of luck to you!

  7. Bev September 29, 2014 at 2:17 pm #

    Hi,

    It’s difficult for me to comment on your post, Bonny, mainly because of Tom, and Allison, who are saying that probiotics and/or diet play absolutely NO role in UC.

    Please don’t smash your head against your screen, Tom, but the probiotic that I have been taking for five years now (and that everyone knows ad nauseum on this site…lol) and the L-glutamine are the ONLY things that have ever helped me…placebo?? I think not. I have been off all meds for 5 years!!! Also…Adam’s diet that has kept him med free for years now?? Placebo? Nope…don’t think so.

    I think the fact is, is, that we are all very different. That is why what may work for one, may do NOTHING for another.

    BTW, Bonny…I also have to say…you are really concerned about going on those hefty drugs…well guess what, my friend?! YOU DON’T HAV E TO DO ANYTHING THAT YOU DO NOT WANT TO DO. You are the boss of you….NOT your doctor(s)!!

    Please remember that. Exhaust all other possibilities first. How about that approach?

    All the very best to you
    :)

    • Tom
      Tom September 29, 2014 at 2:33 pm #

      Bev

      I don’t what you think i meant when i said placebo? If you have a look at any independent double blind drug trials for UC whether that’s 5ASA drugs, thioprines or the biologics, pure placebo success runs at about 10%, so i’m not denying that alot of people might have success with diet/probiotics but i suspect that there are 9 times as many who have not been successful. Also, don’t get me wrong, what Adam has done with this site is great, but we’ve all seen the video of his Gastro who himself has UC advising Adam he should be taking his 5ASA drugs right?

      • Bev September 29, 2014 at 4:21 pm #

        I agree Tom. I know where you are coming from.

        I just had to chime in with my two!! You know me…lol.

    • Amanda October 1, 2014 at 9:43 pm #

      Thank you for your comment. I am in a similar boat to Bonnie (they want me to go on the immuno suppressors) and I really don’t want to. Your comment gives me strength and hope I can get better naturally! :)

      • Bev October 2, 2014 at 7:50 am #

        Hi Amanda,

        We forget this a lot…but you do not HAVE to go on immune suppressants if you don’t want to.

        Remember that. You are the boss of what goes into your body. You only have one body. Somehow, our colons got ‘destroyed’…those harsh meds can destroy kidneys, livers, and who knows what else…just my two cents.

  8. Graham from England
    graham lee September 29, 2014 at 2:22 pm #

    Hi Bonny,

    A have a simple suggestion for you which works amazing for some, though not everyone. It is natural and will only benefit your health. Go to Tesco tomorrow and buy a litre of Napolina extra virgin olive oil, take 15ml dose 3 times a day, before breakfast, lunch and bed. There is so much going on with Evoo for UC which we can’t go in to here but it is a mild laxative, proven anti inflammatory and helps the balance of fats in the body to name only a few. Don’t be alarmed at 45ml a day, this amount is normal for many Mediterranean’s. You can search here or google for “EVOO2” and the post will come up with more details.

    I wouldn’t try everything at once but give this a go sometime soon and for 2 weeks.

  9. Bev September 29, 2014 at 4:19 pm #

    Kudos for adding that Graham.

    Extra virgin olive oil is yet another tool that has PROVEN results in some…

    Another thing to try before even considering those biologics…

  10. Stephanie B
    Stephanie September 29, 2014 at 4:38 pm #

    Hi Bonny, I’ve just had my first remicade infusion so I can’t really give you much advice on that front yet however I do agree that this disease is different for everyone. What may work for one person may not work at all for another. I know when I was diagnosed 2 1/2 years ago I was hoping for a quick fix as I’m sure most of us were. It really is a bunch of trial and error so to speak. Try not to get discouraged and do whatever makes you most comfortable. I would suggest checking out the reviews on here for Imuran. For me there are many foods that defiantly irritate my uc. I started by cutting those things out

  11. Bev September 29, 2014 at 4:46 pm #

    Precisely!

    Everyone is different and therein lies the quandary.

    Trial and error…

  12. joanna September 29, 2014 at 5:56 pm #

    Just want to say that adam’s 5 day diet when in flare changed EVERYTHING for me! Literally! Went Into full remission and could live a normal life! Be strict tho x it’s worth a go
    Right?

  13. Lori September 30, 2014 at 6:36 am #

    We’ll said Bev. I took azathioprine on and off for years with asacol. I started noticing how tired I felt. Went off the azathioprine and felt much better. It has been linked to cancer. I started what Bev is taking and have seen results. Still take 2 asacol a day. UC has had me for 34 years and I follow the great taste no pain way of eating. I read never say I have UC. This is the best I have felt in a long time. Trying to get my gastro to write a script for LDN. Haven’t heard back yet. Everyone reacts different to ways of eating and the drugs and supplements they take. You have to do trial and error. I started with paleo, then AIP. Now I am doing gtnp and this has worked the best. It’s an anti-inflammatory way of eating. I also went gluten free.

  14. Tim B
    Tim September 30, 2014 at 3:14 pm #

    I’m sorry to hear about your issues and it seems that we have a very similar diagnosis. First, I would be careful with the veggies as many are gassy and high and fiber and can cause problems for UCers. Also, I personally didn’t respond well to the SCD diet but have been able to control symptoms pretty well with the Bland diet and probiotics.

    The thing you have to be careful with though is even if symptoms are controlled your inflammation could be spreading and leading to bigger problems down the road.

    My symptoms have been pretty good this year despite no improvement to my inflammation leading to her recommending Humira. Basically there are risks either way and sadly no right answer for everyone.

    I’ve researched this at length and am not in live with the idea but if I don’t take it and the inflammation worsens I’m probably looking at serious damage to my colon.

    Good luck!!!

  15. Maria September 30, 2014 at 6:24 pm #

    Hi, the SCD diet did not work for me at all, made me extremely ill. I became bed ridden and lost 11 pounds in 2 weeks! Azathioprine has been a life saver for me, it’s the only thing that has put me in remission and kept me there. The only side effects I notice are some joint pain and a little hair loss (very little). The benefits of this medication outweighed the risks for me. That being said, everyone is different and respond differently to different remedies and medications. You need to find what works for you! Best of luck!

  16. Blair October 1, 2014 at 8:11 am #

    Bonny –

    Thank you so much for the post. Everyone’s comments have been so helpful! My doctor is currently considering starting me on either Azathioprine or Remicade…I have been on the fence about either for a while now. First I am trying to get my current flare under control with diet, steroids and Lialda. I have been battling my current flare since April of this year, with Lialda alone which did not seem to be helping so we are integrating the Prednisone to see if we can get me where I need to be. I have responded well to them in the past so we will see. But coming off of the steroids usually has me back in a lovely flare. So my doctor wants to me start the Azathioprine since many have had luck staying in remission on this drug. Which lets be real is the dream of every UC-er! But I am definitely going to try all else before starting the Azathioprine or Remicade.

    But good luck to you, just know you are not the only one battling this kind of decision! I am right there with you sister! And when it comes down to it, it is your body and you get to choose how to treat it! Best wishes!!

  17. Zach October 13, 2014 at 2:16 pm #

    Humira along with Azathioprine has changed my life. I take Lialda and Azathioprene but until I gave Humira a try with it I was set on having the surgery it was so bad. The surgeon actually suggested I give it a try and sure enough after about 6 weeks I was almost completely back to normal. I battled bad flares on and off with Prednisone for well over a year. I tried all the diet ideas on this website but they just didn’t do the trick for me. Now I haven’t had Pred in 8 months and not a single flare up! And on top of it I eat and drink almost whatever I want now too! I was really nervous by trying it out but I figured worst case it will buy me some time until maybe a better solution comes along. I was at the end of the line as far as things to try prior to surgery and I couldn’t be happier. I guess my point is just because you read about bad side effects, it doesn’t mean you will get them too. There’s a reason they use these drugs to treat this illness. For some people they work great.

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