Ulcerative Colitis Tips


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My 20 Year Old Son with Ulcerative Colitis

Introduction:

My son (20) was diagnosed with UC in May of 2012. We have been going through rough times with him. My wife and I are doing so much to help him and got him with a clinical nutritionist. We are very disappointed with the regular GI doctors (most don’t care).

My Son’s Colitis Story:

To the UC community… We are starting the SCD diet even though we don’t have it, but we want to support our son (and he is in College).

Our son is having difficulties because reprogramming his brain to eat the SCD food has been hard for him, he says that he is always hungry. Could anybody in the community let us know what kind of snacking you all do so you are not hungry all the time?

College life makes it difficult for him since he is always on the run. I would appreciate as a father and mother all your input so I can help my son through this difficult time. I would like to see him off medicine and healthy. We are suffering much when we see him feeling bad…

I have more trust on this Clinical Nutritionist than on any of the GI doctors that have seen him. It is outrageous that doctors do not mention the SCD diet at all. Why is this?

Our son is on Lialda, does anyone know if this medicine interferes with the SCD diet?

I also have the feeling that my son has a degree of emotional interference, since I have noticed that when he is very stressed out things change more. He usually goes more to the restroom if we talk too much about his condition, or if he finds himself alone in the apartment. He has two roommates, but I have noticed that they are always engaged in their own rooms, I always tell him that he needs to socialize more in person than virtually.

I know deep within my heart that not having a girlfriend bothers him very very much…now, he knows that that part we can not fulfill.

So, his UC I believe is due to bad nutrition in College and stress! Doctors say no, but I say yes! I think Doctors are either playing dumb or in another planet.

As parents of a UC 20 year old son we appreciate all your help and input in advance!


written by Julian
(the father of a colitis patient)




19 Responses to My 20 Year Old Son with Ulcerative Colitis

  1. Randi
    Randi October 25, 2012 at 11:09 pm #

    Julian,
    What a great dad! I am a 20 year old girl, college student with UC as well. It’s important to find a good doctor. Also it’s important to know that UC is not caused by bad nutrition and stress. Those things may cause a flare up but they will not cause the disease.. I started the SCD diet a few months ago and I haven’t had any luck with it. It does work with a lot of people though! I wish your son the best of luck. This website offers amazing support!

    • Julian October 31, 2012 at 1:39 pm #

      Randi! How are you doing? So sorry to get back to you so late… I hope that you are doing well, even though I know that if you are a UC sufferer you might not be doing so good. Well, I have to disagree with you on the stress and the food. We have been bouncing from GI to GI. We found one that at least listens and sits down for a while so you can talk and explain things to him. The other ones that we ran into… I don’t want to see or know about them anymore! Doctors are trained just one way, and they ridicule the natural ways. I have noticed that when my son is very stressed out, anxiety builds up and if you throw a little bit of bad eating policies that will do it.
      My wife and I are cooking so organic, so natural just to test things out for him until we can find a way that the SCD can be introduced to him without the trauma of so much brain reprogramming.
      This past weekend, my wife and I cooked some pumpkin dessert recipes, luckily my son showed up for the weekend and when he asked for dessert we played dumb and offered him that pumpkin dessert…well, he loved it! He did not know it was from the SCDiet. I believe my wife got it from the “Breaking the vicious cylce” book.
      Randi, doctors have told us that neither stress nor the food we eat cause this…if they don’t know the cause of UC…why would they say that? I believe it might not be the cause, but it certainly triggers it.
      My wife and I are reading the book called The Great PhysicianRX” by Jordan Rubin. This is a must read book by not only the UC community, but everyone! I highly recommend you read this book. I am a tech guy since I work in the telecommunication field, so all my reading is focused on technology stuff…but, let me tell you, this book has taken my attention of the technology field…read it.

      Blessings!
      Julian

  2. UC Family Boy
    Uc family boy October 26, 2012 at 1:29 am #

    I find it is important to not jump in and have all the legal stuff right away. It is worth reading the vicous cycle and probably worth re-reading it as you go along on the diet. I am the only one following the diet in my house and I cook all my food and my parent support me which to be honest took awhile as they too had to get there head around the switch – it is important I feel your son is around understanding people at college in order for this to work. As it is just as much about the emotional aspect than the food alone. My diet has been the same foods and I have only introduced some more veg this week and I been on the diet 7 weeks. So it is slowly progress but I feel it is about allowing healing to occur than food you can eat. After all if there isn’t enough healing than you have not chance, even with some of the legal scd foods!!

    Snack wise I love banana pancakes with honey, on the go some applesauce is excellent energy boost, once your son is on the yogurt that is great with avacado, banana and honey. Also worth trying some nut flour made muffins but I found I couldn’t tolerate it just yet. So be prepared for this also with some foods – dairy, nut flour are the main causes of this intolerance early on. I don’t know if your son is living away for college? If so than this is more difficult but than help get him involved in cooking. If he is still living at home it is worth getting him in the kitchen but try treating him on weekends. It sounds kidish but on Fridays after work I come home and make a nice reward meal – tonight I am going to do something with some sea bass I brought ( the other reason I chose Fridays is because its takeaway night at my house and I don’t want to feel bad about not having ice-cream, pizzas…)

    Also get on some probotics and supplements. I found the probotics is helping but again him them 4 weeks, unfortunately I had to stop them for 2 weeks and re start them so only able to assess in 2 weeks But I am seeing less urgency in the morning and also amazing stools even though progress is clearly needed. It is a slow time consuming process but being clear on the alternative is best used as motivation. There are others on here who can give you better advise and experience from the diet but in my short time compared to first being diagnosed in march and out on a list of drugs, I Finally feel I am getting control and honesty believe I will be healed.

    But I would stress it is not able what you can eat straight away but allowing time to heal with easily digestible foods, once these steps are taken introduce some more foods. It is also worth noting to do the diet 100%. Introduction diet followed by stage one, stage two…

    The answer if followed correctly is in the diet. I hope this helps and the best of luck. Once in full swing of the diet it is actually wholesome food that is better than the western diet we all feel is the only option at times.

    • Julian October 26, 2012 at 2:38 pm #

      I really appreciate your response! Yes, my son is living away from home which like you say makes it more difficult because we can not help as much. At the moment my wife and I are training ourselves to put a plan in motion. One worry that I have is that our son stresses so much with his studies and I believe he is somewhat lonely. I don’t think he is telling us the whole story. I talk to him and give him the best advice a father can give a son, I just feel heartbroken and helpless since he is the only son I have and I love him too much! I just wish I had healing powers to cure him(crying at this time, sorry). I only wish I was the one with UC and he could just have his normal life, I could do this SCD diet by myself easily… I swear I could.

      I thank you so much for just taking the time to respond to me…I have to credit my wife so much, she has been such a dedicated mom too, reading and digesting books and sorting online information that I find and whatever we can do…to help him…we will do.

      Thanks so much!

      Julian

      • UC Family Boy
        Uc family boy October 28, 2012 at 6:17 am #

        Hey,

        Yes it is difficult for you all but stick in there. I stressed out at my parents when I last recently flared as I felt very alone dealing with this but my parents, are parents to 3 children with IBD and one with arthritis so they have been through the mill. Stress can not help but it doesn’t cause IBD, same sense bad diet doesn’t cause IBD (people get confused with this) but both can help in the healing, less stress is good for anyone and good food can help with the healing process.
        What is important at this point is for your son himself to understand the science of the SCDiet so that he can progress with it. When I get down about my new lifestyle I go back to the book, feeling good inside is timeless against feeling good ,outside which is temporary.
        It’s hard, I stayed in a hotel for 3 days on work and brought my own food and next week I am off to a restaurant on a work meal and plan to call in advance. If I have to do this for the next 2 years than so be it, but this is my objective based on my serverity of symptoms.
        So my point is, your son needs to take control and all you guys can do is continue to be great supporting parents.
        What I find disheartening and I echo the legend Bev is how with miss guidance from doctors many people out their are falling short and working drugs after drugs and some even getting to the point of losing their colon… Doctors are regarded in high regard for all the great work and knowledge they have but the immune system is such an advance understudied environment than we know less about it than any other part of the body. We might find this hard to understand, I mean we all think – Doctors know everything because they study so hard!! But it’s the same as for all the scientist on the planet, we know more about space than we do about what is under the ocean!!!!! Space is vass and endless yet we know more than what is under the ocean which makes up 70% of our planet. My strange point is, wherever you wish to look, you will only find the answer there. Doctors don’t study micro villi or gut bacteria, they study symptoms..
        I don’t know if I have made my point very well.lol. But looks like you guys are on the right track and doing all the right things, I feel you are better equipt to come through than I so I wouldn’t stress too much, just keep at it and one day your son will be able to bring back some foods again

        • bev October 28, 2012 at 7:39 am #

          Wow, Uc family…

          You just said what is so true…and it’s really difficult to hear and take in…I too think that alot of people have opted for surgery because of feeling that there were no more good viable options…They tried everything the doctors said to try medically…and never even tried the natural way, because either they weren’t aware of it, or the doctors said it would not work. I sometimes find myself crying about that. Literally. How massive a deal is this…removal of one’s colon?! It’s really quite tragic. And, just maybe, so very unnecessary…man oh man…

          I hate even talking about this because it’s so freakin’ real. So close to the bone. We sometimes let ourselves be at the mercy of the doctors. We don’t know how to fix or treat something ourselves. We are raised to trust and believe in ‘our’ doctor(s).

          Thanks for the post. It’s really hard to say these things…but I think they have to be said….and we all have to hear them.

          Cheers…you are a wonderful guy:)

          • UC Family Boy
            Uc family boy October 28, 2012 at 5:23 pm #

            Hey Bev,
            Isn’t it so hard when you hear stories about surgery and Meds not working… It makes me lose faith in the fact the disease can be over come. I try and surround myself with stories of success and make what I am trying to do unique to me so I know it’s not a general answer here but one created for myself, in that I hope to keep faith.
            I do rate doctors, I seen my older brother crippled by arthritis from the age of 16. I had to dress him, help him walk up the stairs… There was no relief but when the doctors stepped in, it was heavy medication and eventual surgeries – hip, knees, elbows. But he feels they have given him back some form of quality life, i am Happy for him. however the other day on tv I saw a program called Food Hospital were a girl of similar age to my bro went on a anti inflammatory diet, 10 weeks later her inflammatory rating went from 18 to 8!!! Doctors asked to be doctors will always do there job to there best of ability. But it is crazy how we give them all our faith.

            So as i am writting this i am watch a doctor about the age old now extinct small pox. Once doctors treated it with leeches and actually giving people small pox so they could become immune to it, so for years this was the norm of treatment from highly trained doctors until a young physician Edward Jenner (not a doctor) found that giving people cowpox was a vaccine for treating smallpox. Hence the first curable disease and I think the only one in the world and the creation of the word vaccine which is the Latin word for Cow, accordingly given after the use of cowpox to treat smallpox. So again, another show of a cure found from not a doctor and also an indication of past Meds not working, or just treating the symptoms.

            I guess more awareness is needed huh! I been thinking, I think my UC was enticed after I drowned in Miami and when in A&E they pumped my stomach and had me on heavy Meds to clear out my system (and my good bacteria) for 3 straight days. Ever since then I haven’t felt right. I am so grateful for all the doctors as otherwise I would be dead and I think IBD is somewhat in the genes like how cancer or baldness runs in some families.. So this moment of drowning I think brought on the IBD. It’s also astonishing how I am reading more pregnant woman are getting IBD.. Or people on some form of Meds. My sister was on tablets for being anaemic and than got hit with Crohns.

            Maybe one day we will find the answers, my final thought of the end of the week.lol

        • bev October 29, 2012 at 6:32 am #

          That is all so amazing. Very much to think about.

          Like yourself, I am certain that my UC stemmed from all of the allergy shots I had as a child…the antibiotics I was given (in the ass by injection) when I was a child for bad tonsils, and the cherry on top…the final knife in my coffin, was the ACCUTANE I took for acne back in my twenties. Terrible drug, accutane…

          With those three things…I didn’t have a chance! There were no warnings for my parents in the 1960s when I had all the shots and antibiotics, and no warnings about accutane either, in the 1990s! Not until the 2000s was accutane correlated with severe bowel disease. And, get this…it is still used and prescribed for acne!!! To young teens, too. A tragedy. Unbelievable. Even with eveidence of UC staring them in the face. Accutane was actually developed a long time ago to help kill colon cancer cells! Then, it was also found to greatly improve acne, and thus, it was and is still precscribed for that.

          As humans we have to take responsibility for ourselves. Learn. Read. Question everything!! We have the right to take care of ourselves and to ask questions, even if it upsets the doctor….too bad!

          Cheers:)

          • Julian October 31, 2012 at 1:23 pm #

            Hi Bev! You just mentioned something that I would have never thought of. My son was on allergy shots for a few years (even though I am not a firm believer of those shots). I showed your post to my wife and she immediately called an appoinment with his allergy doctor. Hammad mentioned food allergies and you say allergy shots….so we are thinking here. His allergy doctor (he has not seen him in a long time) is also an immunologist. I am thinking that he could test him for food allergies and see what foods cause him bad effects.
            Thanks so much for your input! How are you feeling? Have you been doing ok?

  3. bev October 27, 2012 at 9:14 am #

    Hey Julian…you said a mouthful…most GIs don’t seem to care at all. They do everything that they are taught in med school…by the book. None of it seems to work for very long, if at all!

    Please read all of my posts on this site, if you can…PROBIOTICS are the key!! Get a good one…(I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE) and make sure your son takes one capsule every morning, first thing, with water. I find they work best on a completely empty stomach. Never miss a day, and within a month, the symptoms should diminish! I am not kidding.

    I have been in total remission for 9 months…and am off ALL MEDS! Believe me, my doctors are not pleased at all, that I have managed to do what they could not…heal myself!! I was on meds for UC for 13 straight years! Man, I wish I would have known about probiotics sooner! (The exclamation points are to emphasize my anger).No GI will ever mention probiotics to you, unless you bring it up first. They are trained to put you on all the harsh UC meds, and to try each and every one as they all stop working! Imagine that.

    I must also add that I had to add L-glutamine powder (fremented) to my daily routind to heal the mucosa of my colon to stop the bleeding that the probiotic didn’t seem to be able to stop. That was the very last symptom I had left after the probiotics took all the other ones away! I don’t even have to watch what I eat at all now, although foods were never really a trigger for me, at least.

    Cheers, and good luck! You are a wonderful person!!

  4. Julian October 27, 2012 at 3:48 pm #

    Hi Bev, it is so relieving hearing from so many good people out there! I only wish I could meet you all in person.
    As I write this post, my son is home! and actually, he is sitting in front of me studying for his physics exam on Monday and I sat with him to study my own things, so I can give him company, strenght and support.
    Bev, he started taking different supplements with the guidance and supervision of this Clinical Nutritionist who is wonderful. Yes, in his arsenal of supplements he has probiotics and glutamine and he is taking these pills at the right times, the way he was instructed.
    He is taking several supplements as his Nutritionist has directed. I believe one of his main causes fo his UC is College life and stress. I know that many people say that is not a cause, but I say different. He is also very lonely as the people he has met in College have different ideas of what having fun is. I believe he is really missing not having a good partner, friend or girlfriend. Also, deep inside I believe he does not like what he is studying and he is just doing it because otherwise he says he will not have a good job.
    I suffer when I see him struggling because of all those reasons and I don’t find the answer… I talk and talk to him but he says one thing and does something else.
    We are going out of the country in December, I thought maybe seeing something different will open a different path or way of thinking.
    Well, Bev, I really appreciate your comments as my wife and I struggle here behind the screen looking for answers and people like you, people who care.

    Thanks a million! I will be around!

    Julian

    • bev October 27, 2012 at 4:03 pm #

      Julian, you are so awesome. I believe that stress definitely plays a part in this illness. How can it not?

      I feel for your son in that he is doing what he thinks he has to do to make it in this world, It’s so difficulkt to even just live these days!

      How can you help him towards a more positive inlook? Everyone has to find that on their own, and hopefully, when he matures a bit more, he will find more inner peace. It’s something that we all have to learn, and not a switch that we can just turn on and off. If only it were that simple and we could!

      I am happy to hear that he is taking probiotics and glutamine. After what they’ve done for me, I think all UCers should take them!

      Take care…and I am always around if you want to talk or even just need to unload!

      Cheers:)

    • bev October 31, 2012 at 5:24 pm #

      Hi again Julian!

      Wow, your son had allergy shots as well? I’m sure that they contributed to my UC, as well as all of the antibiotics for my bad tonsils when I was young.

      I am doing great atll, and I cross my fingers every day that I will continue to do so. I don’t ever want to get ‘cocky’ about being in remission!

      Cheers, and thank you for keeping us posted!

  5. Hammad
    hammad October 30, 2012 at 4:22 pm #

    Hey Julian
    I totally agree with you that doctors dont seem to care…i had to get about 4 to 7 opinions before i settled for a GI that understands. Well they say that diet has nothing to do with UC but certain foods give bad bacteria in the gut which eventually will cause a flare up…there is no cure for the disease but our goal is to be symptom free. Certain people are allergic to certain foods…you should get your son an a Food Allergy test and completely avoid the foods he is allergic to. As for snacks rice krispies work for me. I also snack on Raw almonds, Vegetable chips (buy them from whole foods). Also vitamins keep up with our immune system ..so a bunch of vitamin water…best of luck to your son hopefully he is done with his school soon .

  6. Jamie October 31, 2012 at 9:13 am #

    Dear Julian,

    Reading your story was like reading my own. My son is also 20 years old and away at his junior year in college. He has 4 roommates who seem to be really good for him. My son was diagnosed last year with ulcerative proctitis. He is having a terrible flare at this time. His doctors have him on Canasa and Prednisone which at this time is having no effect. He will be getting scheduled for another colonoscopy where the doctors will hopefully come up with a new plan. Fortunately for us we are very pleased with his physicians. I am extremely happy with their empathy and with their promptness on reponding to phone calls…even during the weekends.

    I believe that stress has much to do with this disease. Does it cause it? Probably not, but it sure as hell is a trigger to flares. Like you, I feel that my son feels lonely and also wishes he had a girlfriend. If I didnt know better, I’d think you were my husband writing in…haha. Our stories are near identacle. I am hoping to be able to get his flare under control and then try to keep in remission med free. “Listen To Your Gut” has been helpful along with Adam’s book. One thing I want to help my son with is managing his stress. He never had a challege until his freshman year in college. It was then that his symptoms started. I honestly feel if he can manage his stress with exercise and diet that he will remain healthy. Stressing about exams and homework in his bedroom at school and letting it all fester in his gut is keeping him sick. Thinking of him 3 hours away sick and depressed is killing me…so I truly know what youre going through. I have put my son on a wheat/gluten free diet. I cook all weekend and send him back with meals in freezer safe containers. I have him taking aloe vera juice and a 50 billion strain probiotic. I am aware that his doctors will more than likely put him on a stronger medication. This is ok with me for now. I need this boy thrown into remission. Once he starts getting better and starts putting weight back on I will look into weening him off and keeping him healthy naturally. I trust his doctors, however, they’re doctors…medicine is what they know. I am not willing to take the pharmaceutical route long term. Keep us updated on your son’s progress.

    Blessings,
    Jamie

  7. Cathy November 1, 2012 at 9:08 am #

    Julian,
    Our 20-year-old daughter, college student living away, was diagnosed with UC April 2012 and was put on Lialda. So, we can sure sympathize with the frustrations you’ve been going through! The Lialda seemed to help quite a bit early on, but then her symptoms partly returned. She tried a few dietary changes, such as gluten/dairy free, but these didn’t seem to do much for her. We had her tested for food allergies and she has none. In July she was diagnosed with C. difficile and has battled it since, and actually has a consult coming up for possible fecal transplant procedure. I’m (obviously) really interested in finding ways to help her deal with this. There are so many challenges/stresses with being a college student, let alone having to deal with an illness at the same time. You’re absolutely correct in that the GI docs don’t seem to think diet has much to do with this, but I have a hard time believing that to be true. It seems that the more I read about this disease, the more confused I get! There are so many people that claim to be helped by the SCD, and then there are those that think it is of no help at all. Anyway, thanks for the opportunity to “vent,” and I sure wish you all the best!

  8. Julian November 28, 2012 at 2:45 pm #

    Hello friends,

    Well, my son had an appoinment with his GI doctor about a week ago. Before going to see him my wife and I had talked about bringing the SCD diet topic to him, we wvn had the Breaking the Vicious Cycle book in our hands to show it to the doctor. We had warned our son that doctors shy away from anything that relates to diets and natural approaches so our son would not be influenced by the doctor’s theories. Since it is this era where exams and finals approach our son is so stressed out and I can really see it emanating from him! I can tell our son is radiating stress by the way he acts, talks, behaves, and when he is studying (physics test coming soon) I have counted the number of times he has gone to the bathroom (it breaks me!).

    Doctor really didn’t say much, he said that he could give him a dosis of steroids, but our son rejected that. We have been feeding him good food, we are in the process of testing things and getting ready for him to do this diet.

    Today, he had his two exams! He is another person! For the doctors who say that stress does not have any relation to UC…they must be living in another planet! I can tell easily that STRESS is definately realated to triggering UC, might not be the cause, but it is a trigger.

    Our quest continues to get our son healthy. We are in the process of making our whole house SCD sound. We have shifted from all GMO, Gluten and main stream foods into all organic, non-GMO, gluten free foods. We joined a Coop grocer and only buy high quality stuff, and we are cooking all kind of SCD diets. As soon as we master this diet we will train and cook for our son.

    We are still studying and researching extensively online support groups and everything you can imagine. We also made an appoinment to take our son to a Holistic Doctor who will see him in January.

    To distract our son’s attention for a while we are going on a trip out of the country for Christmas. This trip can probably tell us different stories. I want to know if disconnecting him from his regular lifestyle has got anything to do with his UC. Maybe, seeing another culture a different place will create a different scenario.

    We will let you all know what happens.

    Cordially,

    Julian

  9. Lisa February 2, 2014 at 10:35 pm #

    Hi, I’m a 20 years old living with UC. I recently had a colonoscopy. My GI said he thinks its IBS and wont find anything in the colonoscopy. He was wrong. I was given Lialda. Seems to help. They said it will take time. He said to eat a low fiber diet. I’m a stay at home mom to a 6 month old. Before I will always, always yell and get mad. That’s probably why I have UC. Now im chill mode. I feel alone. Also sometimes I wonder if it has to do with the weather. As it kept getting colder it got worse. I feel like once it gets warm, all this would seem like a bad dream. Hope so.

    • Julian February 6, 2014 at 6:32 am #

      Wow! Hello Lisa!

      It has been already a long time since I posted this…actually, I was very surprised to receive an answer on this way.
      As time has past, probably a year an a half, I can tell you many many things that we have done and learned. In September of 2013 we put our son in remission. We are using the Specific Carbohydrate Diet as the main protocol (read Elaine Gottschall’s “Breaking the Vicious Cycle book), plus instead of all those bad drugs that conventional medicine tells you to take, we did away with all GIs and moved on with a great doctor in Integrative Medicine. He is taking LDN (www.lowdosenaltrexone.org), plus lots of probiotics.
      My son took Lialda too…that didn’t do anything for him (as none of the conventional meds will).
      We have created a local support group for IBD problems and are more immerse than ever with his Celiac and UC.

      If you need to talk to me or need help please feel free to contact me.

      Best regards,

      Julian

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