Help with Meds and Food

Introduction:

I am a male 45 years old. I was diagnosed 9 years ago, with a Colonoscopy. The first flare was really bad, not sure if I was going to live or die. Took 3 months to get to see a good GI doctor (was stuck on a really poor HMO). I have been somewhat lucky, only 3 flares since getting it under control, 2 mild, currently into 8 weeks of an extreme flare. Now on Prednisone only day 8 some improvement but still bad.

I have a stressful job with lots of travel, which is not easy with this condition.

Some more about me:

I am originally from the UK but now leave in California. Have been here now for the last 9 years. Hobbies include Golf, Running and Mountain Biking.

Symptoms:

Blood and Mucus every bathroom visit. Before Prednisone I was in the bathroom 25 times a day. Currently down to 8 times but my stomach aches all the time. Not sure if this is due to the UC or the meds.

Help with Meds and Food

I was diagnosed 9 years ago, with a Colonoscopy. The first flare was really bad, not sure if I was going to live or die. Took 3 months to get to see a good GI doctor (was stuck on a really poor HMO). I have been somewhat lucky, only 3 flares since getting it under control, 2 mild, currently into 8 weeks of an extreme flare. Now on Prednisone only day 8 some improvement but still bad.

I have a stressful job with lots of worldwide travel, which is not easy with this condition. I also have to attend many meetings and it is somewhat embarrsiing to have to keep leaving to use the bathroom.

I have a few questions that I am hoping I can get some inputs on from others on this website with more knowledge on this illness.

1) I currently do not take a maintenance course of drugs between flares but I have read that many others on this website do. If you do recommend a maintenance course of drugs what do you recommend.

2) During a flare my doctor told me that food has no influence on my symptoms, I was wondering if other users agree with this as it seems strange to me.

3) I read that smoking helps to reduce the amount of bathroom visits. I used to smoke many years ago so I tried this and it had a really good effect. Helped reduce the number of bathroom visits in half. I smoke 3-5 cigarettes a day currently. I really don’t like doing this due to the other risks associated with smoking but I had to try something. Does anyone have advise on whether an E cigarette will work.

Any advise on any of these questions would really help me. I am currently trying to stay positive but this flare is really slowing me down and I am concerned that if I don’t get hold of this now it may get even worse.

My family and close friends are very supportive but it is still difficult at work etc.

Medications:

I am currently on day 8 of a 90 course of Prednisone

written by SimonB

submitted in the colitis venting area




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14 Responses to Help with Meds and Food

  1. KK-SCDer May 1, 2013 at 8:13 am #

    Simon,

    I cannot sit idly by as someone else is told by their doctor that had food has nothing to do with it. What nonsense! What you put into your body has nothing to do with what comes out of your body? That’s just absurd. Here’s what the doctors say: “there is no evidence that food has any connection to your symptoms”. Here is what I say: “of course there is no evidence. Who would pay for this research? The pharmaceutical companies??”. You are clearly thinking straight if you doubt that food has nothing to do with. Google breakingtheviciouscycle. It will lead you to the Specific Carbohydrate Diet. Read the background on their website, and see if that doesn’t make more sense to you than what the doctors are saying. The diet is challenging, for sure, but I’ve been on it for a year now and I have never felt better. Other diets like Paleo and GAPS diet work as well. Your doctor will say that there is absolutely no evidence that those diets work. Well, of course there isn’t because there is nobody to profit from it. Just read the website and decide for yourself what makes sense. There are tons of support groups online for people on the diet, who are doing it for no reason other than to help others. It really bothers me when doctors say that there is no evidence that food plays a role. This is misleading! It’s also true that there is no evidence that food DOESN’T play a role.

  2. Polly
    Polly May 1, 2013 at 3:13 pm #

    Hello Simon,

    I’m sorry to read about your current troubles.
    My GI also told me that I can eat whatever I want and that diet has nothing to do with it… well, I did not go to medical school, but he’s 100% wrong.

    I also used to have a cool (and extremely stressful) job where I got to travel around the world… I did end up resigning from that position, though. That may not be what you wanted to hear.

    Many many people on this site are off of pharmeceutical drugs and controlling their UC through diet and supplements (myself included). I take probiotics two or three times a day… I also take Fish Oil, Vitamin D, CLA, glutamine, a good multi-vitamin and B12 daily. I take a turmeric pill every other day. There might be some other too that I’m not thinking of right now.
    My diet is extremely restrictive. I eat organic food almost exlusively. Cut out gluten, soy, corn, peanuts, sugar, fructose, and anything with MSG in it. I do not drink soda (regular or diet) and I do not drink alcohol. I only drink organic coffee and eat organic dairy. It’s frustrating at times, since all social events seem to revolve around food, but… it keeps me healthy and out of the bathroom and at work (I now have a “less stressful” job at a credit union).

    Hang in there Simon, it will get better,
    Polly

  3. bev May 1, 2013 at 4:27 pm #

    Hi Simon,

    I don’t advocate taking maintenance drugs….but all of the doctors certainly do. You will learn that doctors actually know very little about how to manage UC.

    I have had it for 15 years, and have been in remission, for the first time in all of those years, for a whole year now….MED FREE. I was on asacol for 14 years straight…and it ended up making things worse for me. My doctor always blamed the UC, but when I finally decided to take charge of my own health, and stop taking the asacol, I felt 100% better! Yep.

    I take and highly recommend a GOOD probiotic (I take Ultimate Flora Critical Care by RenewLife) first of all. VERY important to sort that good bacteria out. When you have UC, you have somehow lost all most or of the good bacteria in your gut. So, that’s number one. You MUST take it on a completely empty stomach…I take it at 6am when I wake up, with water, and then don’t eat for at least a half an hour. That’s the best chance a probiotic has to really work.

    My other MUST is fermented L-glutamine powder. It heals the mucosa of the colon. Again, on an empty stomach…I take it around 10:30 or 11am, a couple hours after I eat breakfast.

    This is not hippy dippy stuff, believe me. I NEVER believed in taking anything natural. Not in a million years. I always trusted doctors and did and took everything they said. Not anymore…

    I am proof that natural is the way to manage this condition. All of the drugs will eventually either not work at all, or stop working. That is because DRUGS ARE NOT THE WAY TO MANAGE UC!! I don’t know when the medical profession is going to get a grip. Person after person on this site, who is newly diagnosed, begins the merry-go-round of prescription meds…trying one after another as each one either has awful side effects, makes them sick, doesn’t work, or stops working…unbelievable. It seems like it’s never going to change!!

    As for food…it certainly does have a lot to do with UC…in some people. Not in everyone. Definitely in some. I cannot eat wheat to this day, or I bleed! I can eat everything else, though. I’m one of the very lucky ones…

    Cheers…and remember…you are the boss of you…not the doctors. You take charge. You ask questions. You do not have to take anything you don’t want to take. Find out what works for you naturally…trust me. I know it’s work, but pills and drugs are NOT going to solve your health problems. They will only make things worse. Maybe not immediately, but down the road for sure. Been there…done that.

    Bev
    :)

  4. OrdinaryWorldWhereRU May 1, 2013 at 5:33 pm #

    Hi,
    Here is my personal take on this. I agree that food has nothing to do with it. And here is why I have come to that conclusion. For me, being on the severe end of the spectrum, it doesn’t matter what I eat it only matters what state my gut is in at the time. Nearly everything is a problem. When things start getting better, my gut can process more foods successfully because it is in better shape. My doctor explained, and I have come to agree over time, that it was more about what my gut could tolerate or process than the food itself. So it comes down to the gut health, not the food. The gut health is the root cause, the food just illuminates the problem and the degree of the problem be it severe or mild. Thanks to a bout with the hives, I stumbled across something that has helped me. Now I want to re-emphasize that this is not an endorsement or anything but my own personal experience. I found that if it take ranitidine each morning and each evening, the blood just goes away and things look pretty good for the most part. Ranitidine is another name for Zantac. I stopped taking it after the hives subsided and that is when I noticed blood returned. I told my GI doc about it when I came for my bi-annual visit and he said that I could start taking it again since it was a drug that posed no ill effects if withdrawn unlike other antacids. I am on Remicade and it has helped me tremendously and is probably the reason that I didn’t have to lose my colon. I also use a Vitamix to liquefy foods that I generally cannot eat. I have started experimenting more with adding foods to my diet that I couldn’t tolerate before and so far so good. I have been pretty much following a low residue diet for 2 years and am extremely careful about adding too much fiber as a test for my system. I am just taking it very slowly. I am hopeful that as I am consuming more healthy albeit liquefied foods, it is supporting my body as it deals with the disease. I should also share that my doctor has categorized me as one of his more severe patients thus me being at the more severe end of the spectrum. I fit the hallmarks of the disease to a tee. I have tried SCD 3 times and all 3 times, it didn’t work. Regardless of strict adherence. So to me, that also further demonstrated that my case doesn’t have anything to do with food, I just have a diseased colon. I rarely comment on this site because so many people are so against doctors, medications, or the notion that food has nothing to do with the disease and I don’t want to get flamed but this time, I thought I would speak up in hopes that another unique story might not be that unique and I might have company. To me doctors and medicines are not inherently bad. My family members got to live longer lives thanks to doctors and medicines. Several had cancer and thanks to the drugs, achieved remission and got to stay here longer than if those things didn’t exist. I don’t mean there aren’t poor doctors, I just don’t reject doctors and medications outright. I used to suffer from migraines early in my life. I was so grateful for meds back then. If I had cancer now, I would be following protocols that would likely save my life or at least extend it and the quality of that life. Sorry to ramble. I hope this is somehow helpful to you. Please hang in there and keep searching for what is right for you because you are unique and special in this world. And probably even more special thanks to the disease because very few people will ever understand what you go through every day.

  5. Ann May 2, 2013 at 8:47 am #

    Hi OrdinaryWorldWhereRU, You are so right in that what might work for some, may absolutely not work for others. Whether one chooses to tackle this disease with or without meds and/or changing diet is truly up to each individual. Each body chemistry is so different and so are the lives that we lead. I am one of the lucky ones and feel as though I can control my uc with my diet, no meds if at all possible but glad they are there in case I need to use them. I have been in the position, however, felt that was not the case. When I was laying in the hospital with nowhere to turn a number of years ago, traditional meds such as prednisone, saved my colon. I also understand Bev’s position in that most docs totally dismiss diet and don’t even offer that as an option which may absolutely work for some people in many cases. I do think, there are more and more docs out there in this world who are starting to learn and tell their patients that diet can be a cure/control for many illnesses such as heart disease, the onset of diabetes, high cholesterol and yes, even UC. Simon, good luck with finding your “cure” Actually, my “cure” is taking EVOO. I haven’t yet tried the ultimate flora Bev refers to but I am not having blood so am staying with evoo. I might eventually go for more optimal colon health and try taking the probiotic in the future. It takes time, wisdom and patience to listen to your body, give it the attention it needs. Good Luck!

  6. Tim May 2, 2013 at 2:24 pm #

    Simon B

    DON’T start smoking again. Try using a nicotine patch instead. You can purchase them over the counter. Do your reasearch on line as to how often and the correct milligram dosage. A lot of people with UC have had good results. I believe Mayo Clinic did a study. I have yet to try the patch but will in the future if necessary. You might look into low dose Naltrexone as well. GOOD LUCK!

  7. SimonB May 5, 2013 at 9:00 pm #

    Firstly sorry for the late reply to all of your great inputs and kind words of encouragement but I have been away on a business trip. Now that I have been on the prednisone for just over 3 weeks my symptoms are getting better. Almost back to normal what ever that is. Except the side effects from the Prednisone. Weight gain and numb feet. Of course I am still concerned that as soon as I stop the drugs the UC flare will be back.

    I am very encouraged to hear that diet is a good way to control the problem although is very difficult with the amount of travel I do. I am going to discuss this again with my doctor next week. I will let you all know what he has to say.

    I am also going to talk to him about probiotics. There seems to be a lot of people on this website reporting good results from using these.

    Your kind words of encouragement have really helped over the last few weeks. This is something I am determined to get under control and take my life back. Have spent way to much time in the bathroom lately lol.

    Simon

  8. Wendy
    Wendy May 6, 2013 at 10:14 pm #

    I definitely do not agree with point number two. I think it is different for each person. I think there’s a possibility that you cannot control the UC without drugs, but I found I can. I may flare again and need the drugs, but after the flare I am far better off without them. Every doctor I’ve encountered (outside of Mayo Clinic) think I am off my rocker when I say drugs harm my body and do not help the UC. The Mayo Clinic Doctor I talked to thinks that drugs are pretty much a placebo and that I should watch my diet.

    It’s really harsh lessons of what to eat and what not to eat. I just found I must be very careful with what I eat despite how awkward it appears to other diners or family members watching me refuse all food at Thanksgiving and go make a banana smoothie in the next room.

  9. Ann May 7, 2013 at 6:04 am #

    Hi Wendy, I swear the traditional Thanksgiving meal is one of the worst I encounter every year. I have so much gas and cramping after eating it, I don’t even look forward to having it any more. I hope you don’t go to the next room, sit and enjoy your smoothie with the rest of the family while they are eating all of the gobble stuff…after all, spending time with the ones you love is what Thanksgiving is all about…unless they cause you stress…that’s another story… :)

  10. colney.k May 9, 2013 at 3:31 pm #

    Hi Simon,
    for me evn if UC puts u low i think u must always be positive n feel lucky, dat you dont have cancer or dreadful diseases which others r dealing with.your mind ur thought is very important.i have UC since 1992,i was daignose in 1997 evry three years ihv had major flare up since 2006,2009 as i was working in cruise.so our problem is related to stress too.i too feel i must stop m meds as i m in gud condition after a year but in 2012 ihad again n was depress too,i recently tappered m meds n stop by myself n i get a mild flare,this has to do with my bad eating habit too much of flour, sweet milk,biscuit drank too much tea n had beef,pork,n eat alot.
    i was given remicad thrice now i take messalamine which is call vegaz od in india as mesacol gave me hair lost.,not more thn two eggs for protien.
    i think the best food is rice yogurt,dal(lentil),well cook veggetable.n i think about smoking is just becoz u thought it helps so i dont recommend as it is injorious to health.i tk probiotic,omega 3,vitamin mineral n to substitute m greens i tk wheat grass tablet.i also tk aloe gel whn m in remision which i neglect smtimes.

  11. SimonB May 17, 2013 at 6:55 pm #

    Thx for all the valuable inputs. It really helps knowing that there are others out there who have lived through the flares and got out the other side.

    I saw my GI doctor today he told me that because Apriso and entocort did not work that this is a sign that my disease had got worse. He also told me that when I complete the prednisone that my flare will return. As if my magic two days after my visit I had blood and mucus again as a result of the wining off of the med.

    He is suggesting I now take 6mp. This looks like a seroius drug. I have already been for the first blood test to check I can metabolise the drug. Results in 5 days. Then another blood test in 20 days to check to see the effect on my liver. Followed by regular blood tests.

    Does any one have any advice about 6mp?

    Heres hoping it works.

    Simon

    • joanna May 17, 2013 at 7:44 pm #

      hey simon. i was on 6mp twice. the first time was at 50mg and the second time was at 25mg. it really helped my symptoms a lot the first time and pretty quickly. i know most doctors say it takes a while to kick in but i noticed my bowel movements and pain go down considerably in about 3 days. after about 6 months, my liver enzymes were really high so my doctor stopped it. we started it up again a few months later after my enzymes were down but this time it was at 25mg. this didn’t do a thing!! i was pretty bummed because i was hoping for a big improvement. i think 50mg was the sweet spot for my UC but hell for my liver.

      so i’ve had to stop it for good. i would’ve stayed on it if it hadn’t hurt my liver though. luckily, the liver recovers pretty fast after you are on it.

      • SimonB May 17, 2013 at 8:20 pm #

        Joanna

        Thx for sharing your experience with 6mp. I was wondering if you can’t take 6mp anymore what are you taking now.

        Simon

  12. Sharon May 21, 2013 at 12:44 pm #

    I have had UC for 23 years. I would flare about every other year and with each pregnancy for a short time (I have 4 kids). All my flares could be controlled by taking Asacol or Sulfasalizine or on a few occassions, Prednisone. I have also used enemas,Flagyl, and a few other things but never needed to stay on anything. After an allergic reaction to Lialda, I can no longer take any 5 ASA drugs. I tried 6mp and it caused bad headaches and exhaustion so I had to stop. My GI told me that if you ever stop taking 6mp you will never again be able to take it. He said it is almost as if the body becomes immune to the effects. I am currently taking Humira shots which worked (or maybe I just wouldn’t have flared)for about a year. I am back in remission but am now needing to make changes since I am on the verge of flaring again. I take VSL#3 DS and am looking to add the L glut that so many on this site use. As for food, when I am in remission nothing I eat bothers me. AS someone else said, when my colon is inflammed and raw, many things hurt. Having said that, I am becoming more and more conscious of processed foods and aspartame. I will not follow a specific diet unless I absolute have to but I will choose to read labels and attempt to eat more “clean”. In a large family, eating organic is very expensive but I can go to the local farmer’s market, eat fewer chemicals but reading labels etc. I am not against any of the diets recommended but I would feel more stressed trying to feed my family then choose different foods for myself and I feel some of the more restrictive diets are not ideal for healthy growing children.

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