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Worried Wife of a Flying Husband

Intro:

My husband is 34 and flies internationally. He was diagnosed with UC 2 years ago. Since then he has had two colonoscopies, switched doctors, and had a refined diagnosis of proctitis. I am trying to help him with the SC diet, but improvement is very slow. I wonder if his travel schedule of 2-4 plane trips a week make his UC worse?

Some more background:

We live in London, England, and despite having access to some of the best doctors in the world, we feel frustrated, hopeless and without support.

Symptoms He’s Having:

My husband has been bleeding for 6 months. Sometimes is accompanies a bowel movement, sometime it is just blood that comes out. He uses Pentasa suppositories twice daily. The blood is bright pink and despite increasing his Pentasa dose, it is consistent. He is fortunate and has no cramping or much urgency.

My Husband Has UC, Here’s The Story:

  1. I am strictly adhering to the SC diet when cooking for my husband at home, which isn’t as hard as I thought. Many recipes that I formally cooked with incorporate all legal foods. Actually, check out the Joy of Cooking – tonnes of SC legal recipes in there and great ideas for substituting ingredient. Also, Whole Foods stocks organic freshly ground almond “flour”. I buy almost exclusively organic now. hoping that this will help him too. Certainly much of this diet is good for ourselves and our three young children, though my kids and I eat our fill of pasta when my husband is away ;)
    My questions that I worry constantly about are:
    How long does this diet take before you see results?
  2. Any tips on how best to adhere to this diet if your work demands that you constantly travel and eat outside your home?
  3. Any ideas if changes in air pressure from flying impacts the volume/severity of bleeding?
  4. Is there a natural progression with UC? Will it eventually get worse?
  5. The SC diet says dry wine for low sugar content. How can I learn which wines are best?
  6. I know stress is suppose to be bad for most everything, but is it particularly bad for UC?
  7. My husband is very fit and works out frequently as a means to keep healthy and reduce stress. Could this impact UC?
  8. Could he have internal hemorrhoids if the blood is so brightly coloured? Or is that normal?

I worry because I can see that he is worried. We are a young family and it frightens me that he is struggling to cope with all the demands in his life, plus this on top. Any answers, suggestions, tips or shared experiences are gratefully received. I have found this website to lift my spirits and really appreciate the community on here.

Medications:

He has mostly been on Pentasa. I am sorry but I do not recall the first suppository he tried.

written by Bronwyn W

submitted in the colitis venting area




13 Responses to Worried Wife of a Flying Husband

  1. Lymesdiseasulcertivecolitis June 9, 2015 at 6:05 pm #

    It sounds like he may have a fungal problem. Flying in airplanes can make fungals like candida or mold more active or severe in nature. You should have him tested for mold via a urine test and candidia via a stool test. I would also have your home or his work place checked for mold. You should also have a Lymes disease test done via Igenxe labs. If strict diet does not work within a few months I would heavily suggest testing for a wide variety of pathogens. I would not start heavy immune suppressants or biologicals until the infectious component has been completely ruled out.

  2. Joanna June 9, 2015 at 9:36 pm #

    Sorry to hear you are so worried xx

    This is something we have all been through. The worry send the unknown is scary! That’s why this forum is amazing! We’ve all been through it and it’s a comfort to hear and chat with others.

    I am currently in remission. For me it took Oral prednisone steroids along with pentasa oral and suppositories. It is trial and error as you will hear so often as different meds and diet works for different people.

    Diet wise I keep off all sugars and grains. I think sugars are my trigger but who knows.

    I also take a probiotic first thing, then a drink of lemon, Apple cider vinegar and honey. Also put larch wood tea powder in my smoothie as someone suggested this is good for reducing inflammation.

    I’ve tried everything suggested on here with different results but the only thing that got me quickly into remission was a short course (6 weeks) of steroids and diet change. Try Adams 5 day diet and be very strict.

    I am in England too, Birmingham, so if you ever want to chat – joannaruk@yahoo.co.uk

    All the best for your husband xx

    • Bronwyn W June 13, 2015 at 10:19 am #

      Joanna,
      Your words are wonderful to hear. It means a lot to me that others are feeling what I feel. Since your post my husband has given up caffeine and now drinks honey and lemon water in the morning. These ingredients are available in hotels everywhere. Poor guy is exhausted on caffeine withdrawals but he is committed to doing whatever it takes to get this under control.
      I will look into the larch wood tea powder. Thank you.

  3. Tam June 10, 2015 at 2:17 am #

    I was diagnosed with colitis when I was 14, and had to have a colonectomy only two years later. But I tried my best to answer your questions.

    1. By the time I learned of and tried the SCD diet, I was already too sick to benefit from it. So, no idea.
    2. I was on a gluten and dairy free diet for almost a year, though, so I have some experience there. It was definitely hard, and sometimes embarrassing, but there will almost always be something on the menu that can be modified in some way to fit different diets. It’s just that you need to get used to asking.
    3. I have no idea if air pressure has anything to do with colitis, but I have heard that colitis is worse as a young adult, and then again in your mid-forties. Although cases definitely differ from person to person.
    4. I don’t drink, sorry!
    5. Yes. I don’t have a study to source or anything, but it seems like every time I’ve heard of someone getting UC, it’s always right in the middle of some stressful period of their lives, and many of my flares were associated with a big test or competition. I believe that’s the case with most autoimmune diseases.
    6. Since consistent exercise is generally an anti-inflammatory, exercise is great for IBD.
    7. If the bleeding is current, it’s normal for it to be bright red, but I wonder about it being pink. I would ask a doctor, or at least someone who knows better than I do.

    Hope this helps in some way! I will also add that while steroids are awful, they certainly help. I’ve also seen many people who benefit from Remicade or similar medications.

    • Bronwyn W June 13, 2015 at 10:25 am #

      Dear Tam,
      I am sorry to hear that you began your struggle from such an early age. My husband is trying to be very strict with the diet, even referencing the SCD diet legal/illegal list when ordering from menus. I think the stress is something he needs to look at separately, but right now there isn’t much we can do about his job.
      Best,
      Martine

  4. Graham from England
    Graham June 10, 2015 at 4:03 am #

    Hi Bronwyn,

    I believe the low carb diet is proven to reduce inflammation so worth sticking with. It is hard to adhere to and replace certain foods when out and about but good on you for supporting your husband.

    The outlook for UC seems to vary widely, many end up with surgery as things must not get out of hand for too long. Many seem to improve by slowly learning to manage their personal improvement plan. There are inevitably up and downs but managing stress/lifestyle are high on the priority list IMO. It is an autoimmune disease and stress disrupts our body’s ability to maintain good working order. Is your husband an ex smoker?

    Exercise is supposed to be good but anything too strenuous is believed to be counter productive.

    Proctitis is inflammation towards the end of your colon so the blood is not so mixed within the stool.

    My inflammation is in the same area as your husbands and the best thing I have found so far is extra virgin olive oil. I take 15ml 3 times a day, before breakfast, lunch then bed. I have researched this extensively and the link below shows the EVOO I endorse (I have had it tested in Italy).

    http://m.marksandspencer.com/mt/www.marksandspencer.com/taste-of-italy-hamper/p/p60044354

    Best to you and the family.

    • Bronwyn W June 13, 2015 at 10:32 am #

      Dear Graham,
      I am grateful for your reply. I will head to my local M&S this week and we will try the olive oil. Can you first tell me what effect this has and why?
      Also. My husband is an ex-smoker. He quit 6 years ago but smoked for 10. Does this impact his UC?
      Thanks for your help,
      Bronwyn

      • Bev June 13, 2015 at 3:19 pm #

        Oh my goodness, yes, smoking can and does impact UC!

        Unfortunately for a lot of us, UC was not even present until we quit smoking. An almost sure fire way to get remission from UC is to go back to that nasty old habit…but who wants to do that? Not good for the lungs..,UC not great for the rear end…We can’t win!

        I believe the reason UC can occur after giving up smoking is because the colon gets dry and less mucos-y. There appears to be something in those good old cancer sticks that in turn, make the colon more ‘sticky’. Who knows what or why.

        Graham’s olive oil and why it works the way that it does may just replace that mucosa??

        Does anyone know?

        • Graham from England
          Graham Lee June 14, 2015 at 2:09 am #

          Hi Bronwyn,

          Here is the ihaveuc link with lots of information about EVOO.

          http://www.ihaveuc.com/evoo-2/

          Like Bev said the smoking thing is a big part of the UC picture for many of us, it is well known as the ex smokers disease. It seems we have UC already but smoking keeps it controlled until you quit. As Bev said smoking would almost certainly stop symptoms (after 2 weeks or so). There is a huge post on this site about smoking if you search for it.

          Smoking/EVOO both reduce the anger in our colons while calming the immune system/reducing the inflammatory response. Smoking will reverse a flare, the oil will also for some but not for me though does massively extend (non smoking) remission periods.

  5. LiLiA
    LiLiA June 13, 2015 at 6:09 am #

    Hi Bronwyn, I’m so sorry to hear that your husband is having a tough time coping with the UC and his job. I totally understand why you are so worried. I have had UC for 6 years now and for the most part it has been controlled by Pentasa, Pentasa Suppositories and Prednisalone steroids during mild flare-ups. However, during a severe flare, I ended up in hospital Oct 2013 for 3 weeks and my only saviour was Infliximab. Now I’m on a maintenance drug called Mercaptopurine which is keeping my symptoms mostly in remission. There is no rhyme or reason to this disease. Mine has changed from proctitis, to indeterminate colitis (symptoms of both Crohns and UC) to just UC over the years and mine is most definitely affected by stress. I now do a much less stressful job and do gentle exercise (anything too strenuous is not advised but some absolutely will help).
    I’ve done extensive research into the Specific Carbohydrate diet and am considering trying it out after a colleague of mine (who was on the same drug as me for UC) tried it for 2 years and is now both symptom and drug free which is amazing. However, it seems that simply eating the legal foods may not be enough for many people. If you’ve not read it already, get the book “Breaking the vicious cycle, intestinal health through diet” by Elaine Gottschall. It really makes alot of sense. However, what it doesn’t make clear enough is that you really must do the Intro Diet first, THEN introduce all foods slowly (like when weaning a baby). That way you’re far more likely to succeed on it. It also suggests that if you follow this path with “fanatical adherance” and you don’t feel better within a month, then it just might not be the diet for you. That’s the strange thing about UC, some people know their trigger foods, for others it makes no difference at all what they eat. 2 sources of info that I can highly recommend are pecanbread.com…..read every section on the SCD. Plus, look at all the stories and links in the diet and SCD section of this site (I’m so pleased to have found Adam, his wacky sense of humour, and an arena in which I can fully vent my frustrations!) Finally, go to SCDlifestyle.com. They have a comprehensive downloadable guide to the SCDiet and how to do it properly (it’s a continuation of what Elaine started in her book that is very useful- there is a good section on travel in there too). I have brought my yoghurt maker and have set a date to do the intro diet when I have a short break from work so that I can reduce the “die-off” symptoms (I’m a bread monster and will find it very hard to give that up!) Your husband has a brilliant head start though as he’s already reduced down the carbs anyway so he should find the intro diet much easier.
    A final note. I was in the Wine Trade for years so can give you some hints and tips on that. If your husband likes white wine then anything dry is fine (avoid Vouvray, Chenin blanc, Moscato or anything that describes itself as sweet). The less fruity the better. I would particularly recommend most Italian Whites (Pinot Grigio, Orvieto, Gavi eg), but not Prosecco. Most French Sauvignon blancs (classics are Sancerre but they make some good ones in the rest of the Loire Valley and Southern France) are likely to be drier than New Zealand or other New World styles. Most red wine is fairly dry but obviously avoid any dessert wines. I would probably avoid New World Merlot, Malbec or Shiraz (French is probably better), especially at the cheaper end as they can contain more residual sugar to make them appear sweeter. If you let me know what he likes to drink then I’m happy to make some more suggestions of course!
    I know this is a long reply but I can relate to much of what you’ve raised, so I do hope that you find it useful. My partner has been amazing through all my bad moments and having someone in your life who is supportive is worth it’s weight in gold! Best of luck and do keep us posted on how your husband is getting on. Lili x

    • Bronwyn W June 13, 2015 at 10:49 am #

      Hi Lili,
      Wow. Thank you so much for your feedback. My husband has been on this diet for a little over a month. He is taking a probiotic and is off caffeine, and this week he gave up wine. Wine is an area of life that is of great interest to him and brings him happiness so I feel quite sad that in his effort to make the bleeding stop he has given up a passion. I really feel like this disease has done more damage in taking out the fun from his everyday life.
      He prefers Itlaian wines, like Brunello, Barolo, Amarone and Chianti. He does not know as much about whites and we will look into it.
      He has been on the SCD diet for one month. He thinks that on a scale of 1-5, where 5 is the worst, he went from being a daily 4 to now being a 2. His stools are more solid as his body is adjusting to the diet. The blood mostly comes at the end, as Graham was saying, because it is proctitis. I guess we have to stick to the diet. In the Vicious Cycle book she says it can take 1-2 years of the diet to come off meds. This makes me want to cry. It is hard for me to find the time between my work and my kids to cook good tasting foods for us. I guess I need to buy Adam’s book?
      Best,
      Bronwyn

      • LiLiA
        LiLiA June 15, 2015 at 9:07 am #

        Hi Bronwyn,

        I’m so glad you found my response helpful and I really feel for you trying to balance work, kids and cooking the right things for your hubby. As I said, I’m waiting to try the Intro diet when I’m off work as it should only take 3-4 days before other foods can be introduced but it’s still very daunting! That said, if it works and makes me feel better then anything is worth a try in my opinion. It certainly sounds like your husband is seeing some benefits, so I’d say keep it going (and I highly recommend downloading the scdlifestyle EBook if you can.)

        Interesting comments from other UC’s about the smoking. I was quite a heavy smoker for 12 years, gave up in 2004 and was diagnosed with UC in 2009. Maybe a coincidence but most annoying all the same! I will never go back to smoking though!

        Now, about the wine. I don’t think your husband needs to give it up altogether, just stick to a small amount would be my advice. I have a glass most evenings and it doesn’t seem to affect me until I drink a whole bottle in one sitting! If he really appreciates wine then it seems a shame for him to give it up completely. The Italian reds you mentioned mostly should be ok (probably go easy on the Amarone though as they can be high in alcohol and usually need a level of residual sugar to help them age). Have a look at the following link for some other ideas but I think Old World quality wines should be alright for him in moderation. The drier the better and try and avoid the cheaper end.

        http://www.winefolly.com/tutorial/wine-sweetness-chart

        All the best and do let me know if you need any more advice.

        Lili

  6. Joanna June 13, 2015 at 9:40 pm #

    Don’t forget a teaspoon of apple cider vinegar in the honey and lemon. It helps with all sorts of things but changes the acidity of the Colon I believe (Google it) xx. I take it in my honey and lemon but when I travel take an apple cider vinegar tablet xx. Caffeine is known to irritate the Colon. If your husband can stomach an apple I hear you get 10 times the energy from an apple than caffeine. Just don’t know how apples are with UC as I only have them in smoothies when I am flare free xxx

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