Ulcerative Colitis Tips


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Father Needing UC Advice

Intro:

Father of 12yo boy w/ UC diagnosed May 2013. Been through the normal diagnostic regimes. On 5-ASA meds now and having to consider if next steps to immuno-suppressants will be necessary. Looking for advice from parents of kids with UC on how to approach therapeutic alternatives.

My Son Has Ulcerative Colitis

Hi … I’m father of 12yo boy diagnosed with UC in May 2013.

We are at point in treatment where it appears 6-MP and Biologics are proposed next options. He has been symptomatic (4-8 diarrhea stools per day) for last 6 months and has lost about 10% of body weight in that time. Not enthused about potential side effects or long term implications of the 6-MP or Biologic therapy. Currently using Asacol (50 mg/kg) and Canasa suppository daily but with results noted above. GI doc is OK w/r to any other therapeutic approaches such as TCM and SCD as long as we are attentive to his reactions. GI doc categorized his UC at this point as “moderate” but at this level vs other diagnostic guidance, I would say moderate is being generous. Currently increasing Asacol and Canasa to maximum the GI doc thinks is safe to try to see if it can shift to remission.

Trying to figure out if some approach to SCD would be worth trying before other choices, but having difficulty figuring out how to get a 12yo to buy-in to diet restrictions. Early on we tried strict SCD but only survived about 3 days on SCD protocol before stress/revolt took over. Family stress on what to eat is through the roof on most days.

Really would use some advice on how to help move diet in a direction that might show some benefit so that he could see for himself that he has path to help control his symptoms. Hoping that some others on this site have experienced similar and can related to us how they coped. As a family we’ve tried to eat healthy (organic, whole food, less processed), but obviously not in a manner that will work for a child with UC.

How have parents dealt with what to send for lunch to school? What are potential afternoon snacks that are not carbohydrate and sugar based that could appeal to a 12yo boy? Hates carrots … are the other options that might fit the SCD needs but potentially appeal more?

Also considering if Probiotics would be of benefit in helping induce remission or moderate symptoms. Considering VSL#3 and Renew Life Ultimate Flora.

Any advice or experience you can relate on this is much appreciated.

Gary




16 Responses to Father Needing UC Advice

  1. Adam
    Adam February 1, 2014 at 5:10 am #

    Gary,

    have you looked over the Pecanbread.com website at all?

    That site has some good SCD and child friendly readings to it. That would be my suggestion.

    ALSO, if you can find a time/way to explain to your son the logic/idea behind SCD eating and why people like us with UC decide to try it, that might help. I’m talking about the whole idea of changing the picture of who is winning the war in terms of gut bacteria in our colons. “The helpful bacteria strains vs. the not so helpful ones which trigger the immune response”.

    I wish you the best, and for sure, there’s many who have also had success with probiotics, both of the ones you’ve mentioned before. The Renew life probiotic even has its own review page here where many other UC’ers have listed their personal firsthand review: http://www.ihaveuc.com/renew-life-ultimate-flora-critical-care-probiotics-reviews/

    Best to you and your son,

    -Adam

  2. kassie February 1, 2014 at 8:08 am #

    Gary I know it’s scary when you can’t keep your food down because your running to the bathroom. I was diagnosed when I was 19. I have been in several different meds that did not work. They were very expensive as well. I have been drinking shakeology for a year and I am in remission! Email me for more info at kassie_brancheau@yahoo.com. I would love to help you!

  3. Juliet
    Juliet February 1, 2014 at 11:53 am #

    Hi Gary,

    Was just about to suggest the pecanbread website! I have also signed up to a website which email some good recipe ideas, I believe they have books available as does Adam. The site is http://www.thecandidadiet.com Also just remember that we spend many years bombarding our bodies with all sorts of toxins and chemicals, we can’t expect it to heal in a matter of weeks, or even months. I know how hard it is trying to stick to a strict diet at any age. I can imagine how difficult it must be to not only have your child suffer, but then to have to take away not only treats but things that are considered staples in our daily diets.

    I have been doing lots and lots of reading and research. Not to mention using myself as guinea pig. One thing that is very important and is often over looked is magnesium. Many many people are deficient in magnesium. Of course many supplements are hard to absorb and can cause diarrhea, so the best way to supplement with magnesium is through the skin. You can do this with Epsom salt baths and magnesium oil. I’ve been having Epsom salt baths 3-4 weekly and recently ran out. Not only were my symptoms of PMS so so bad this month, but I also became really constipated. Had 2 Epsom salt baths yesterday and period aches went away and this morning a normal BM! So I ordered some oil.

    I’ve had UC for about 17 years and had all of the meds except the biologics. My worst flare was last year. I had bad reaction to Asacol as well as a bacterial infection. Spent most of 2013 on steroids. The flare was only controlled by five day course of metronidazole and vancomycin. I am now not on any prescription meds. I make 24hr fermented yoghurt, magnesium and try to stick to sugar and carb free.

    I hope you can convince your son it’ll take some time with diet but it’ll be worth it to have good health.

  4. Graham from England
    graham lee February 1, 2014 at 1:36 pm #

    Gary,

    Yes I agree with Adam, we’ve got to feed the good guys and starve the bad, once we understand who they are. You have come to the right place to really help your son, it will take time and effort.

    I am not suggesting stopping medication that is working but there is much anecdotal evidence to suggest meds are just a sticking plaster and a one way ticket to surgery. I’ve had a bad reaction to Asacol, it is a TNF blocker as many UC drugs are (even nicotine). These TNF IBD drugs are now believed to cause cranial nerve damage, stroke like episodes and can bring about, as well as exacerbate MS. I already had a natural solution that I hadn’t quite optimised and reluctantly used these. Within 6 weeks I was in hospital and off work for 2 months.

    No stone should be left unturned for natural solutions and I once laughed at such notions.

    Dietary intake of‎ Linoleic acid/Omega 6 (found in most cooking oils and processed food) is believed to cause over a third of Ulcerative Colitis‎ cases. Omega 3 fish oils are a must for most UC’ers but a good intake of Oleic Acid (such as EVOO) has been proven to nullify the inflammatory result of Linoleic acid, even though it is 3 – 20% of Extra Virgin Olive Oil. See my post http://www.ihaveuc.com/evoo-2/comment-page-1/#comment-265420

    The links below may help your stress and your son’s UC, something you could try together. It has information for non invasive and natural Vegus Nerve Stimulation. The video reminds me of a 1980’s Florida hotel room but it’s not all scented candles and Whale music, why not take a look?‎

    It’s not complicated which is why I like it. I’m a problem solver by nature though have historically dismissed over complicated solutions as unrealistic. This is probably why I (like many others) had been all to eager dash for the pills and ignore natural solution’s, doh!

    If you can’t reduce the stress in your life, the next best thing is to take part in an activity that will at least take your mind from your problems. For me that would be gardening or golf but in addition I find these simple breathing exercises calm me while at work or during more stressful times‎‎

    2) http://www.sott.net/article/215548-Vagus-Nerve-Controls-Intestinal-Inflammation‎

    http://eiriu-eolas.org/online-version/‎

    ‎Best wishes to you both…

  5. j February 1, 2014 at 4:14 pm #

    You may be interested in reading this study: http://www.ncbi.nlm.nih.gov/pubmed/23542823

    My GP has young patients who participated in a FMT study at Seattle Childrens’ Hospital and they improved. Hope this helps.

  6. bev February 1, 2014 at 5:29 pm #

    Hi Gary,

    I understand the not being ‘enthused’ about biologics…I have had UC for 17 years and, like all of us, the good old doc recommended the dreaded biologics like they always do because everything else stops working…duh! The biologics stop working too…then what…surgery??? This is the UC merry-go-round that we all find ourselves on. Sorry to sound pessimistic, but it all makes me so angry…,meds are NOT the way to treat and manage UC…yet the doctors still go through the whole drug protocol…

    Here’s the thing…ALL of the meds either don’t work at all, or stop working after not too long….not to mention the often ‘deadly’ side effects one can get from taking these drugs. I would never take biologics, no matter what anyone said to try and convince me (and they have tried, believe me), and I most certainly would never let anyone put them into my children. Just know that these are serious drugs…

    I do not and will not judge anyone who does decide to try these drugs. We are all different. I have just found that after 17 years of trying one med after another, that UC has a way of getting around all of it, and all one has really done, perhaps, it to harm themselves in the long term. Who knows, right? Is cancer later worth putting the UC in remission now…and not for long either…because it always resurfaces…

    I would look into any clinical trials that are natural, like fecal transplants…I am not on any meds any more, and yes, I still flare from time to time, but the meds don’t work anyway! I take a good probiotic, L-glutamine for colon healing, a natural anti inflammatory called astaxanthin (but there are others…curcumin, vitamin D…and so many more). Natural has worked better for me. They have actually kept me in remission for 2 years at a time! Meds never did that…

    Good luck:)

  7. bev February 1, 2014 at 5:30 pm #

    Oh yes…and diet!! Sorry…forgot to mention that. Adam be the expert on that…and YES, diet can make all the difference in some UCers!!

  8. bev February 1, 2014 at 5:32 pm #

    I take the RenewLife Ultimate Flora Critical care and it’s fantastic…completely empty stomach, though, and then no eating or drinking anything OTHER than water for at least half an hour…works best that way.

    Last post…I promise!!

  9. Erin February 1, 2014 at 6:02 pm #

    I’ve had good luck with the SCD diet, and in my opinion, the recipies in the original book are pretty heavy on snack and dessert items…likely because it was developed as the author had a daughter battling UC as a kid…?

    That said…paleo recipies are helpful. I’m having my second meeting with a nutritionist who works extensively with the IBD-AID diet, this week…I’ll ask her if I’m allowed to post some of the recipies she has given me. In the interim, try googling UMASS and IBD-AID – her page should come up with lots of recipies

  10. Wendy Monteiro February 11, 2014 at 12:19 pm #

    Hi there,

    I am also working with the same nutritionist that Erin mentioned who works extensively with the IBD-AID diet. My 11 year old daughter has been diagnosed with UC as of January 9th 14. We have done all the drugs including Imuran which after taking it for one month my daughter got C-Diff which was a bitch to get rid of. We have been following the SCD since January 12th, it has been a definite adjustment but well worth it. My daughter had her first blood test yesterday which came back showing all of her numbers have improved. If you weren’t successful the first time trying SCD try again. We originally started introducing SCD legal foods then we had a set back with a food that was too advanced at that point we went straight to the intro diet and have moved on to stages 1 and 2. It is a slow but healing process. Since starting the diet all of her symptoms have stopped. What were her symptoms prior to the diet? Night terrors, night sweats, lethargic, no energy, wanting to lay on the couch every chance she got, bloody poops up to 5 times a day, constant cramping, she would constantly be holding her tummy and would walk a bit doubled over, smelly scalp, smelly feet, the list is endless. Today 1 month in all those symptoms are GONE and she is pooping once a day and has gained 4 lbs. My entire family is now eating SCD as long as you get yourself prepared ahead of time by stocking you pantry and fridge you should be able to do it.

  11. Jake S
    Jake S. February 22, 2014 at 6:12 am #

    Gary,

    I want to echo what Bev said without being too negative; I am having a total colectomy in about 2 weeks because I have been on the ‘UC roller-coaster” and I am heading straight towards colon cancer.

    I have tried every drug available and it either stopped working or caused me pancreatitis.

    In regards to your question about switching to an immuno-suppressant, I can’t totally make that call but I can tell you I know folks who do great on it but most of who I talk to feel terrible, rundown, tired, etc. from using the drug whether its Humira or Remicade. I used Remicade for 11 months and I still had a major flare but throughout the whole time I wasn’t able to exercise nearly the amount I used to be able to, was getting sick all the time and just feel crummy.

    I don’t want this to scare you away from a potentially good solution, but that was just my experience.

    In terms of diet, I have tried it all and people can preach about diet as much as they want and that’s completely awesome if they found a diet that works for them but most of the time it is the same situation, it may work for months or even years then a flare is bound to hit.

    I wouldn’t have believed it myself as I was in remission for 2 years solid on nothing whatsoever then I got blasted again.

    That is how the disease works, plain and simple.

    Diets are an awesome way to help maybe minimize the intensity of the flares as they come up, but there is no catch all if the diagnoses is true UC or Chrons.

    I hope your family does what feels right in your “gut” and keep me posted; I was a young buck too (not 12) when I started this battle and I know the frustration.

    As an FYI; stress is a factor in IBD, most GI doctors won’t tell you that but if you pry they will admit there is actual measurable data of stress and flare coincidences.

    Keep us posted.

    PS, I’m sure you know, but be careful on what you read people writing about medication on some of these blogs throughout the internet..for example, asacol (was mentioned earlier) is mesalamine/a 5ASA compound not an ATNF (remicade and humira (animal and human protein-based).

    A majority of people don’t know what they are taking or how it actually works in the body, where it works, and the goal of the drug and they are all both extremely and subtly different in the family of IBD med’s avail.

    Also, fecal transplants are not readily available for UC or C at this time; they are being used primarily for C-diff.

    Take care!!

  12. Graham from England
    Graham lee February 22, 2014 at 12:28 pm #

    Jake,

    You seem very well informed and I’m happy to bow to your superior knowledge but I couldn’t help but feel you had a dig at me here. Most people say 5ASA is not a TNF blocker but there appears to be evidence that it does. Here is just 1 example..

    http://www.ncbi.nlm.nih.gov/pubmed/10029619

    We are all here to help and I’m happy to stand corrected.

  13. Jake S
    Jake S. February 24, 2014 at 10:36 am #

    No dig, sorry if it read that way…you know like I do, a lot of these boards (not necessarily this site) have a lot of misinformation. As always, I love reading everything anyone has to offer on here; we all can use the support from time to time.

  14. Graham from England
    Graham lee February 24, 2014 at 1:01 pm #

    Thanks for getting back to me Jake, maybe just my paranoia then. I do have some weird theories and who needs yet another lecture from some English bloke? Keep supporting!

  15. Jake S
    Jake S. March 3, 2014 at 12:45 pm #

    Absolutely man! Going for the total colectomy surgery this week…will keep you all posted.

    Take it easy and enjoy “The Tube,” is that what they so over there ha ha?

    I’m just a country boy from Kentucky ha ha!

  16. Marq Rich
    Marq Richardson March 17, 2014 at 7:20 am #

    let me get straight to the point… surgery is the only cure… im so glad i got the j-pouch.. its been 2 years since i had the pouch and i only had 1 case of pouchitis. i think we all had or have the same symptoms but if you want them to stop and you dnt want to take no more meds i suggest the surgery.. i got back to a normal life, not worrying about wheres the nearest rest room… i go 3 times a day now.. morn, noon, and night… i dnt even wake in the middle of the night that often….i disagree with all these home remedies and probiotics crap…the bottom line is flares trigger when they want, whether your on meds or not.. ppl need to understand that these remedies are not the results of their remission… i believe remission happens on its own… every med or remicade that i took , i still had flares while on these medications… it came and went as it pleased… with this disease you can loose your job ect… cant plan events… you know what i mean.. bottom line is im perfectly back normal… med free…symptom free….. no worries….im going to make this a general message for now on and post on other ppl pages as well…any questions or comments reply to this post or if you want to talk on a personal level you can give me a call any time on mon-tue………… wed,thur,fri,sat,sun b4 330pm 347-351-7694

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