A Young Man’s Journey With Ulcerative Colitis

Introduction:

My teenage son was diagnosed with UC when he was 10 years old. We live in the United States in the state of Michigan. He enjoys video games, golf and tennis, and has played on his high school’s varsity tennis since his freshman year.

The Symptoms my son faces:

My son experiences symptoms such as diarrhea, abdominal pain, disrupted sleep, fatigue, slowed growth, osteopenia and sometimes anemia as part of his “normal” life. Acne is another problem he’s been having over the last year. Antibiotics made his UC worse. Accutane is out. Oracea and some topicals seem to be helping (although very expensive!).

How ulcerative colitis changed our/his life:

Our family’s diet is much healthier since UC. How can I get him to understand that good nutrition is important? He loves it that he can “cheat” and get away with an occasional pizza or fast food. I fear that when he is in total control of his diet, his UC will flare. My son never complains about doctor’s visits or blood tests. He converses calmly with the doctor and nurses about subjects that I know would normally make a person cringe. I appreciate that they have ‘grown’ with him and are treating him like the young man he is and not a child. Sometime before he is 21 I know he will have to find another doctor for his adult journey with UC. He will love it and hate it at the same time. Sadly I see his self-esteem has taken a huge hit. Family has been supportive – though he strongly prefers not to talk about his UC. I now find myself thinking about how he will manage his life in college. . .I know he is tough, but at the same time in some ways he has been ‘babied’ because of his UC. What have others found that parents can do to help their teenagers make this transition? What advice do you have for UC’ers going to college, explaining to teachers, getting a job and talking to employers? His concerns: He’s asked me at least a couple times, “Is UC going to kill me?” He’s also said that he just assumed that at some point he’d get cancer because of UC, and that he would die before he was 40. I’ve tried to assure him that it probably won’t be that way, and that he very likely will have a mostly normal life.

Where I’d like to be in 1 year:

I’d love to see my son’s confidence in himself and the future restored. I’d love to see him excited about making plans for his future. As his parents we believe God has a good plan in all this, and we hope that our son can use it all positively in his life’s testimony.

Medications my son has been involved with:

In his initial rough period, he started with prednisone and Pentasa. His doctor was not satisfied with his progress and recommended 6-MP. While he was on 6-MP, his liver (I believe, anyway something) started showing signs of distress so his doctor pulled him off of it. Doctor wanted to try Remicade next, but we opted with trying what his doctor called an “elimination diet”. I think the diet along with vitamins is where we had our best results. He continued with doctor check-up visits and blood tests to help us track how he is doing. For five years he took no prescription medications. About a year ago his symptoms started slowly increasing, and a few months ago he started taking Colazol. His symptoms have not changed much, but his blood test results look better. As I write this, he is taking part in a clinical study (clinicalstudy.gov) through his pediatric gastroenterologist’s practice called “Gut Microbial Transplantation” also sometimes called “Fecal Bacteriotherapy” and “Human Probiotic Infusions”.

written by CJ

submitted in theĀ  Colitis Venting Area




Ulcerative Colitis Tips


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15 Responses to A Young Man’s Journey With Ulcerative Colitis

  1. Adam
    Adam April 6, 2012 at 5:57 am #

    CJ, I was very mildly symptomatic while in college, but if I was going to go back to college again(that sure sounds like fun) I’d definitely want to let my teachers know that I may need to roll out of class and head to the restroom more often than others.

    And, I don’t think this would need to be some big drawn out process. All teachers use email these days. So it could be as simple as writing an email, attaching a picture, and saying, “hey teacher, my name is Adam, I’m going to be taking your class. I probably will need the bathroom more tan others because I have a gastro disease called UC. Here’s a link if you want to learn more about what UC is: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001296/
    Also, if there is some assigned seating, I would be thankful if you could seat me somewhat close to the door so my bathroom visits are the least distracting to the rest of the class…

    CJ, that’s just an idea, but if your son is not the type right now who likes talking about the UC stuff with others(and I totally get that) maybe just a simple email to teachers could cover that side of things.

    Better yet, and I sent you an email with this same message, I’d highly recommend that he try to meet up in person with other UC’ers or people with IBD. I know from my own experiences, the in person “patient to patient” contact was a turning point in my battle with colitis, and it was way more valuable than any office visits with doctors or family members for that matter.
    Again…just an idea.

    thanks so much for sharing. I wish you and your son the very best moving forward,

    Adam

  2. Active UC'er April 6, 2012 at 7:21 am #

    Hi – I am a 30 year old adult still in the college education system (grad student). I have also taught college classes. If he will be in a small class (say around two dozen), will have in class graded activities, or will be in a class with an attendance policy, then he should let the teacher/professor know about his unique situation ahead of time. If he will be in a large lecture class (100+) then leaving, coming in late, etc. won’t be a big deal unless there is a test. Also, he might want to look out for test make-up policies.

    Also, he (or you with him) might want to talk to the college’s equivalent of disability services. As a teacher, I would be highly suspicious if somebody kept walking out during a test. And we all know that UC doesn’t care what situation you are in! Disability Services would have on record that he has UC. This will make it easier to navigate any future situations (more lax standards for making up a test, fewer questions if he has to get up during a test, etc.). This will also allow him to break certain rules/policies written in the syllabus if necessary. Some professors are big on needing “excused absences” for making up a test. That means documentation of visiting the doctor for the flu, signed note from college coach for a sporting event, etc. Their test make-up policy will be in the syllabus so he will need to keep an eye on such things.

    Overall, open communication beforehand is best. It just seems less of an “excuse” if it is brought up before there are any problems. Professors are human too and will likely completely understand special situations.

    Also, one more thing. He doesn’t need to be specific when talking with the professor – just saying that he has a diagnosed gastro disease that sometimes interferes with daily – that he may need to take frequent bathroom breaks and that if he takes a bathroom break it is absolutely necessary. I like Adam’s suggestion regarding mentioning the disease and providing a link with more information.

  3. Bev April 6, 2012 at 3:44 pm #

    Hi CJ,

    First, I’m so glad you said that ACCUTANE is out! I took that drug for acne in the 90s. Today, I have pancolitis, which is just ulcerative colitis throughout my whole colon. I know I got the UC from accutane, because I was diagnosed shortly after taking it.

    Second, that fecal bacteriotherapy will be the way to go, I’m positive! I think our guts and our colons simply need to be repopulated with good bacteria that we have somehow lost along the way. Probiotics, and fecal transplants. All naturral! I’m sure this will be the wave of the future in treating UC.

    Best of luck to you and your son. All of the medical drugs prescribed to get our condition into remission are dangerous, and they don’t work in the long term. Please let us know how your son does with the transplant.

    Cheers,
    Bev:)

  4. Phyllis April 6, 2012 at 4:17 pm #

    I have been a victim of UC seance 9/11/05. I think I have finally found something!!!!! I have been using baking soda, Magnesium Citrate, and a good Zinc supplement. Cute out all processed sugar and dairy. WOW I feel so much better, bleeding slowed down but not completely stopped yet. It has been 3 days. Look it up on Earthclinic.com then look under the sub-title Ulcerative colitis.
    the best to all
    Hang in there
    Phyllis

  5. Gary April 6, 2012 at 10:52 pm #

    Hi there. Yes me too. I know God has a plan for my life, I just don’t know why it includes UC. I’ve had it 4 years now. In November I wanted to die. Going to the bathroom every 20 minutes day and night. Joint pain severe and fatigue like I could sleep all day. Tried diet nothing seems to make a difference except cutting out dairy. I investigated the doc in austrailia and he has a fecal transplant program with a very high success rate. I got UC shortly after taking a high powered antibiotic for a condition I found out later was not an infection. I am convinced that the antibiotic screwed up my guts flora.

    So not to sound gross but I started doing my own fecal transplant with my wife as donor. No one knows about this but me and her. We bought an enema bottle, a gallon of distilled water and a cheap blender for the bathroom. I did about 7 daily transplants before bed every night in a row. No success. I felt disappointed. But kept it up doing it about twice a week after that. I noticed about 3 weeks after starting it that my bowel movements went down to maybe 6-8 times a day which was very good for me. I then started to notice that I would somtimes sleep all night without having to get up. My almost completely liquid bowel movement was becoming semisolid. I could begin to hear “plops”. I almost forgot that I used to have muscle pain because one day I said to my wife that I’m not in severe muscle pain. Wow. So I felt like I was going into remission on the fecal transplants and have been doing well until about a week and a half ago. I still felt fatigued and everyone was telling me to take iron. I went to the pharmacist and got a prescription from him for the lowest level iron supplement I could get. Here in Alberta, Canada pharmasists can prescribe iron. I took a pill a day and within 3 days my stomach was in severe constant pain, I started bleeding and my trips to the bathroom skyrocketed. That’s where I an now. But we are renovating our ensuite bathroom so it is an inconvenient time to start fecal transfers again but I will start a regime again tomorrow. I was just talking about that with my wife today. I dropped the iron after a week as I figured it wasn’t doing me any good. I do the transfers in the bathtub before bed and try to stay still for a while as I have a VERY hard time keeping it in. After a while I’ll shower off and go to bed. Sometimes I can hold it for an hour and somtimes I lose it right away. But I am convinced that there will always be some residual bacteria that will start multiplying. I find this much cheaper than VSL3. Lol. Well that’s my 2 cents. I hope you find it informative. Oh I forgot to mention. Just before the fecal transfer kicked in I was about to go on Remicade. I was even investigating surgery.

    • Bev April 7, 2012 at 2:09 pm #

      Hi Gary…

      Wow, you are quite the guy!

      I too was investigating surgery, because I refuse any more colitis meds. They just make me feel worse, mostly. I started probiotics, and within a month, I am practically symptom free. I have no idea why, but I am. I’ve been posting my guts out about it all over this website.

      I have been waiting for a fecal transplant specialist to call me for about four months now. I will definitly try it, as well. Believe me, NONE of what you are doing sounds ‘gross’ when we have UC! We are used to so called ‘gross’ right?! As long as it works, who cares? I think natural is the only way to go. All of these meds can hurt us down the road, just like the antibiotics did to you, and me. Ever since taking avelox last year, for pneumonia, I have had the worst flare ever. Upped the asacol to 12 pills a day, and I was still crapping bloody water. I refused the remicade and the imuran that the doc insisted I should try. Well, not anymore! My flare is gone, and this has never happened to me before…where the flare just slowly goes away! The only thing I did different was to take a probiotic, for the first time in my life! And, I stopped the asacol about three weeks after that. As soon as I stopped it, my ‘you know what’ got very firm! I think the asacol was actually causing the looseness. Now, I’m going like a healthy normal person! Just hang in there with the enemas and take a cheap probiotic, too. It can’t hurt, that’s for sure. Then, you’ll be probiotic-ing at both ends.

      Cheers, and be well,
      Bev:)

  6. Gary April 7, 2012 at 8:28 pm #

    Have read online people doing a VSL3 enema and vitamin E enemas with success. Anyone here have experience with that?

    As far as gross goes, my wife is a saint. She daily cleans the toilet. A tip for anyone who wants toilet advice. We changed our toilets to Toto Sanagloss low volume toilets. I researched the heck out of them. I used to plug the old toilets and had to scrub them like crazy. I’ve never plugged this Toto. And it is so EASY to clean because of the sansgloss. Especially the purple stain caused by the Salofalk (I think it has a different name in the US). The old toilets had to be scrubbed, the Totos just need a quick wipe and they sparkle.
    If anyone wants a model number….

    Again my 2 cents.

    • Bev April 9, 2012 at 10:35 am #

      Gary,

      I have no experience with the probiotic enemas, but they sound great, don’t they? Beats using poop, if you don’t have to. I want to check in to those as well. I have heard of them.

      Just curious, Gary…did you take antibiotics before you were diagnosed with UC? If so, when, and how many times over the course of your life?

      I ask everyone that. I an convinced that they, and some other prescrition drugs, are the culprits in acquiring UC…

      Bev:)

  7. Zach Cortez April 9, 2012 at 10:58 am #

    I tried VSL3 and it left me bloated and sick. Iv been gluten free for 6 months and it’s the best UC decision I have ever made. It takes 3 months for it to kick in, but I show no symptoms. Full of energy and getting back into the rhythm of things!

  8. Gary April 9, 2012 at 2:48 pm #

    Wow Zack. You got energy. That’s the place I would like to get to. When I was feeling better last everything seemed under control except the fatigue. And I am a fit guy in good shape otherwise.

    Bev. I never got sick before. I rarely take drugs. Even avoid antibiotics. No smokinng. But I got the vas snipped and after I had constant pain there. Going to doctor they say it’s infection. So I get an antibiotic. No difference. Several doses later and two long term treatments with what is a powerful antibiotic which I don’t remember name of I come down with UC. And on seeing a urologist my problem turns out to be scar tissue which I will always have. I don’t blame the doctors though as they have no other options. We want results and they only have pills. I’m trying a chiropractor right now too.

    • Bev April 9, 2012 at 4:01 pm #

      Gary…aha! Antibiotics.

      Me too! Never sick…then in my twenties I took accutane (which I’m sure started the UC ball rolling), and then antibiotics a couple of times…and then the strongest of all antibiotics over a year ago for pneumonia…my colon’s been screwed ever since.

      I know, the docs have no other options, really, and not all of our colons get ruined from taking certain drugs. The docs can’t knowfor certain who will be afflicted colon-wise, and who wont…sad really…

      Bev

  9. Gary April 9, 2012 at 2:51 pm #

    As far as having a son with UC I so feel for you. I would take this illness on myself if any of my kids or my wife had it. I really do feel for you as a father and your son. :(

  10. Zach Cortez April 10, 2012 at 9:21 am #

    I’m 17 and just about to head to college in the fall myself, I have the same concerns.

    Gary I also am seeing a chiropractor, I don’t know about you but the adjustments have seemed to help with UC.

  11. Gary April 10, 2012 at 4:04 pm #

    Yeah, Zack. I haven’t been seeing him very long, but I think it helps. He seems to think he can either cure the colitis or at least reduce the symptoms greatly. I’ll try anything right now short of the immunosuppressive drugs and surgery.

  12. svetlana January 3, 2017 at 6:42 pm #

    Hi CJ,

    My son is 18 and has UC for 2,5 years – severe form.

    We were looking also to the option for participating in the FMT trial.
    As I understand your son was participating in this type of trial.

    I was wandering if this FMT helped him? How he is feeling now? Do you think we should tyr it?

    I would really appreciate your answer.

    Svetlana

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