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Conflict with Traditional or Alternative Treatment for UC

Meet Lynn:

I’m the mother of our 18 year old college freshman who was diagnosed with ulcerative colitis in May 2012, symptoms since January 2012. Our family eats very healthy though our son was one to go for fast food when he started to drive.

The UC Conflict:

My husband and I and our daughters are very frustrated with our son, their brother.  Yes, ulcerative colitis affects more than just the person with UC.

Our family has always taken the natural approach to healing. Since our son is 18, he is an adult and is living at college so he has the freedom to choose what to do with his life and this treatment for his UC. He wants a quick fix so is listening to the GI doc for treatment. We have gone to a few naturopathic doctors and basically they have suggested similar supplements. I portion out his supplements so it is easy to take in his dorm room and also prepare and portion food prepared from home. I think he eats the food but he does not take the supplements or if he does not correctly. He then says they aren’t working.

This week he scheduled an appointment with the GI doctor to try Remicade.

He has it all planned out and thinks it is going to be a quick fix. He doesn’t want my husband and I to go to the appointment with him.

alternative treatment for colitis conflict

Should we be quiet and let him make his own choice or intervene and say no way? One determinate factor is going to be cost of treatment. I know humira has some kind of deal at $5.00/month? I know the disease is a bummer and I feel for him but I do think the body can heal itself and he doesn’t want to take the time and figure that out. His colitis symptoms developed after having the flu and he had his appendix out in September 2012. He was doing well with supplements and tapering from his first round of prednisone and then the appendicitis.

He then started to regress and is now on 20 mgs of prednisone with the GI doctor wanting to put him on a harsh med. This GI doctor does fecal transplants on C.Diff patients but refuses to do the procedure on our son because he said it doesn’t work on UC patients. So as I write this post going into this week with this big decision we must make, I am very uneasy. My husband and I do not want our son to go on these heavy meds but what choices does he have?

He doesn’t want to go the alternative route. Is there any “safe” level of prednisone? Which is safer prednisone or humira? Extremely frustrated parents as our son is not on the same page for treatment as we are. Would love to hear other parents take on this. Do we let him make the choice that could cause him irreversible damage to his health? Most of these harsh drugs have not been used very long so do not know what the long term affects could be.

written by Lynn

submitted in the Parents and Friends Venting Area




34 Responses to Conflict with Traditional or Alternative Treatment for UC

  1. KK-SCDer December 2, 2012 at 8:37 am #

    Hi Lynn,

    Not a parent. However, I was diagnosed just before my freshman year of college, so I know a little bit about this. Your sons reactions are very similar to mine. My parents were very concerned about me, gave me all sorts of advice, gave me all sorts of supplements to take, etc. I never followed their advice and then said that I’d deal with it on my own. That was dumb. In my opinion, the only way to go is the alternative medicine route. All of those traditional meds are kind of like pain-killers — yes, they make you feel better, but they do nothing about the underlying issue, so when they wear off, you are back to where you were. Look into the fecal transplant (I haven’t done it, but have heard excellent things). Next time your GI tells you it doesn’t work on UC, ask him to show you evidence. Hint: there is no evidence — of success or failure. It simply hasn’t been studied. This absolutely does not mean it doesn’t work. Definitely try the transplant. Look into the Specific Carbohydrate Diet or the Paleo Diet or the GAPS diet. Find a good (lactose free) probiotic. The traditional meds are a complete non starter, I’m sorry to say. Remicade has been known to be a ‘miracle drug’, but I haven’t read about anyone who has been on it for more than a few years before it loses its effectiveness. It’s really remarkable what diet can do. I know its difficult for a college student to be on a diet, but if he wants to get his life back its the only way. Best wishes!

  2. joanna December 2, 2012 at 12:13 pm #

    if i were in your position, i’d definitely let your son be the one to decide his treatment plan. he is the one who has to live with the side effects of the meds, and if he is okay with that, then maybe the meds will help him.

    i was like you for a while where i wanted natural treatments to work but they just haven’t so far. it’s very taxing on everyone involved. my family is big on medicine so i tried all the tough stuff as well as things like LDN and fecal transplant- didn’t help my UC at all.

    your son just needs to experiment to find what works for him. remicade stopped working for me after 5 infusions so just make sure he knows that your body can build up antibodies for no reason.

  3. bev December 2, 2012 at 3:32 pm #

    This is such a hard one!!

    I am an advocate, as KK-SCDer is, of alternative treatment in UC. The meds for UC have caused me nothing but problems. Time and time again, I read of and from people on here who thought remicade was going to be the magic bullet…and alas…it did not happen. All of the drugs used to treat UC eventually seem to fail, and then we are told the only alternative left for us, is to have our colons removed! Ridiculous!! Why not try the natural things…that seerm to really work??? Our colons never need come out at all. How drastic is that final result, right? This is how I feel.

    Putting those so very harsh drugs into our bodies is so counter productive. The doctors are only too happy to oblige, unfortunately, and in fact, they are often the ones who suggest there treatments! Sorry to be so anti-med, but I have had this disease for almost 20 years, and for the first time since I’ve had it…I am in COMPLETE remission, tahnks to probiotics and L-glutamine.

    There is NO magic drug for this disease. I wish we all knew that before we began trying them all, one after one….so sad…

  4. Isaac December 2, 2012 at 3:42 pm #

    I’m a 20 year old university student diagnosed with UC about a year and a half ago….it’s difficult to follow a specific diet when you are not always living at home, but your son must find the things that may upset his stomach (every person may have different foods so it’s just trial & error!). If he does not take the meds and symptoms get worse, he will revert to them sooner or later!

    I was on prednisone with a larger dose for a number of months and they made miracles with not a lot of side effects! (just eating a lot and sleeping less at times)

    I think he should take the meds as instructed, and if they don’t work talk with the GI doc! Some meds take a longer time to start working so he will not see improvement in the next day!

  5. shelly in maine December 2, 2012 at 4:16 pm #

    This disease is not a bummer..it is a life changing, embarrassing, isolating, debilitating life long disease. I encourage you t talk with him and be part of his decision making making processes. It sound like frustration and blame…he needs your support and help. Encourage him to come to this site and research all his options. You don’t mention his symptoms. He didn’t get this dreaded disease eating fast food. Sorry to sound so harsh, but you need to help him and right now he is pushing you away…he wants you to listen.
    As far as meds the jury is still out as is some of the natural stuff. The one thing to caution him on is using up a Med like remicade or humira…it’s basically a one shot deal as your body builds up immunity to them eventually.
    I encourage you to keep researching all avenues and listen to him….he is 18…this is a life long battle…ibd not ibs.
    You and your family mayalso want to read Adam’s book…that will help you, your family, friends better understand what he is going through. Also read lots on this website of stories and other parents and connect with them.
    Wishing you and your family all the best in helping your son toward Wellness.

    • bev December 2, 2012 at 4:29 pm #

      As always, Shelly, fabulous advice.

      Shelly knows what she’s talking about! Alot of us have been through all of this, and it certainly is no small thing to have to deal with…and it is forever:)

      • shelly in maine December 2, 2012 at 6:28 pm #

        Working on getting myself out of another flare -about 2 months…since being Med free . Still hanging in there to stay med free….year and almost 5 months! Trying Herbals from my chiro, enzymes, upped my already Mega dose vsl3, already have glutamine in spirutein, aloe, cocnut milk, the kitchen sink! gave up mlk and yogurt and doing SCD.(Not nearly as much fun as Adam makes it out to be….sorry Adam!)..except for the few supplement illegals. Desperate times call for desperate measures and giving it the old college try. Told my GI no more toxic meds. (I’m allergic anyway)and we talked surgery, again…not so encouraging from his vantage point…gave me some Apriso Samples just in case and went to my regular Dr. first he’s a D.o. and he gave me an Rx for prednisone in hope s not to use…a little Murphy’s law he said…if I have it then I won’t need it. :-) How’s that for a doc?! And believe it or not, my GI who has been with me since the beginning said he preferred no prednisone..too much accumulate d use over 30 + years! Oh by the way, no doctors do j-pouch where I live! Still working on keeping my innards anyway! :-)
        Stay healthy, Shelly

        • bev December 3, 2012 at 7:35 am #

          Hey Shelly…I was not aware that you are in a flare…I’m so sorry.

          You have been flaring for two months? I’m so glad you are trying everything natural first. I dread the UC returning. Every so often I get a rumble or a cramp and I just think…oh no…well, I’m sure that you know what I mean.

          I like the sound of your doc and murphy’s! Great attitude. I bought the pred that the specialist wanted me to take over a year ago, and it sits patiently and politely in my medicine cabinet…I never took it…never had to…wishing you the very same on that front! At least it was cheap!!

          Cheers, and keep up the try…you’ll get there Shelly…

          • shelly in maine December 3, 2012 at 4:29 pm #

            Bev,
            Thanks! I just wanted you to know. (That post was for you, but your name disappeared my tablet was being tempermental!)
            By the way, I was put on sulfasalazine about 2 years before my diagnosis when i was 13-about 32 years ago. I think it was Adam’s Dr. And i know mine has mentioned that there are “possibly” some benefits and potentially reducing the risk of cancer with those meds?? Jury is still out on the whole cost benefit thing.
            Anyway, thanks. Still have both meds taunting me…keep them in the bathroom for extra irony and inspiration!!
            Be well, Shelly :-)

        • bev December 3, 2012 at 5:33 pm #

          You’re so special Shelly!

          Cheers:)

          • shelly in maine December 3, 2012 at 6:39 pm #

            Bev, and right back at ya! Keep spreading your alternative Med wisdom…spreading like wildire…exponentially changing lives! :-)

          • shelly in maine December 3, 2012 at 6:40 pm #

            Ooops wildfire…well maybe it could be wild-ire!?

  6. Jackie December 2, 2012 at 5:52 pm #

    My daughter is 16, diagnosed and spent a week in the hospital Spring 2011. We had no idea what was wrong at first and by the time she was diagnosed it was too risky to go with natural medicine, she was in pretty bad shape. She spent a week at Cedar’s where “the best in the world for pediatric GI” pumped her full of prednisone and then proceeded to try one thing after another until something finally worked. The doc told us that diet had nothing to do with it and that she would likely be on IV remicade infusions for the rest of her life. I wasn’t OK with that…

    Of course once we figured out what it was I started looking into natural and dietary treatments that had worked for others. She was a teen, and didn’t want to be told what to do or how to handle it. I took the approach that I wanted her to make her own decisions but I wanted her to make them intelligently; knowing as much information as she could, so she could make the best decision for her. At first, she wanted nothing to do with any of my suggestions. She didn’t believe it would work and she didn’t want to have to modify her diet so drastically. Eventually, she started to open up to the natural approach on her own. I also encouraged her to go online and do as much research as she could. After some frustration and some trial and error she figured out what worked for her.

    She is now taking a low does of Azathioprine, the side effects of which are relatively minor compared to Pred or Remicade. She has figured out a diet that works for her (a variation of the SCD diet) and is also taking pro-biotics, extra iron and when she feels a flare coming on she takes Boswelia root and does Ultra Inflamex shakes.

    If I were you, I’d definitely let him make his own decisions and handle this himself. But hopefully he will at least listen to your advice, and take it into consideration as he makes his decisions. The most important thing to do is support him and arm him with the knowledge he needs to make the best decisions he can make for himself!

    • bev December 2, 2012 at 5:58 pm #

      Jackie, that was a wonderful post!

    • shelly in maine December 2, 2012 at 6:02 pm #

      Well said from the perfect perspective! :-)

    • joanna December 2, 2012 at 7:10 pm #

      hey jackie, what kind of iron does your daughter take? i recently had 2 blood transfusions and i’m still really anemic. i am allergic to the iron infusions but my hematologist thinks i should just take them anyway (he’s not the brightest doc haha). i know i need something that’s easy on the gut.

  7. Andy December 2, 2012 at 8:36 pm #

    Difficult one – as a father myself(but I am the one with UC) I can understand whats going on here.

    I think traditional/natural methods are good for maintenance, but I have never been able to quell a flare on traditional medicine. 5-ASA and prednisone enema’s generally do the trick for me, but I also have found probiotic’s(including fermented food, kefir etc), vit d, inulin, glutamine and zinc to be great adjunct’s to aid recovery and maintain remission status.

    I would not touch the TNF-alpha 1 inhibitors(himura and remicade), there are increased cancer risks and they are new drugs so we don’t yet know the full risks, 5-ASA has been around for 30 odd years. I would(and did) suffer prednisone at dosages high enough to make my hair fall out before I touch that stuff.

    Alot of good research out there on worms/helminths these days, might be worth taking a look.

    • bev December 3, 2012 at 7:27 am #

      I can’t believe what I learn on this site!

      Thank you Andy…I was on asacol for more than 13 years and I always worried about the long term effects. For some reason, I was unaware of how long that grug has been used. You have quieted my mind a bit! When the specialist suggested I try the biologics because the asacol was not working, I could not and would not agree to the remicade and the humira after reading up on them. I just could not wrap my head around immune suppressors…I don’t think that is ever the way to ‘cure’ something. Our immune systems are there for a reason and I’m not sold on this ‘over active’ state that the doctors tell us is happening. I think we need to heal our colons naturally, and sometimes slowly. We all want things to happen instantly and life just ain’t like that alot of times…

      Cheers:)

  8. Lane December 3, 2012 at 3:51 am #

    Just had my appointment with my GI yesterday. He doesn’t want to see me for 6 months. I am in remission right now after a long bout with UC. I listened to Bev, a contributor on this site and decided to go off Lialda and try the “natural route” to curing myself. I now take Prebiotin which was developed by a GI doctor. I mix this powder with a drink once daily. Along with this I take a multi-vitamin and L-Glutamine and Astaxanthin. I do not take any medications from my GI doctor. He was pleased with my results and told me to continue this regimen as it is working. Oh, my Primary Care doctor was the one who recommended taking a good Probiotic. I take the one recommended by Bev which is Ultimate Flora, 50 billion strain. I do not know at this time if this is the reason why my symptoms of UC have stopped but I do know I will continue this regimen as long as my symptoms of bleeding and urgency have disappeared. I was diagnosed with mild to moderate UC after a colonoscopy. It seems that the natural way is working so I will keep doing it. It’s been about 3 months for me that I’ve been symptom free. I think the best treatment is the one that works for you personally as each person is different.

    • bev December 3, 2012 at 7:29 am #

      Lane, I still cannot express into words how thrilled I am that you attained remission! I really could cry every time I read a post from you on this matter.

      Isn’t it wonderful? I feel so good, too. I’m so so grateful that this worked for me as well.

      Now, if only everyone else with UC could ‘get there’ too!! What a happy world it would be…

      • Lane December 3, 2012 at 3:17 pm #

        Cheers to you Bev,

        If I had not gone on this website and read your recommendations, I’d still be suffering with my UC symptoms. It’s been since September that I’ve been symptom free. I’m hoping that I won’t ever need traditional medicine. I think if you can use alternative therapies and they help, then that’s the way to go. Again, I am so thankful to you for your advice and encouragement. I do not want to take meds as I fear the side effects and think the natural way is best. Have a wonderful holiday season Bev….and I am forever grateful for your recommendations! :)

        • bev December 3, 2012 at 5:39 pm #

          That is so nice of you to say…but you deserve all of the credit for trying it for yourself!

          I think that if I get another flare (and I am crossing my fingers that I never will again), I will only try alternative therapies. I just cannot go backwards and do the meds again, you know what I mean? If I got here doing what I (we) did, then I can heal myself again, I’m sure. The meds all seem to fail…hopefully that isn’t true with the natural stuff. That is a big fear of mine…

          All the best to you too! Have a superb holiday Lane! Enjoy how good you are feeling. I know I do…every single day!! I never want this to change…

  9. Lynn December 3, 2012 at 11:54 am #

    Thank you everyone for your comments and helpful words of encouragement for our son. The GI appointment went better than I thought. The doctor wants to start him on asacol again. The last time he tried asacol he was in such a bad flare it was hard to tell if it was working. The GI doctor did not and does not want to put him on remicade or humira so that was good.

    Again I have the tools to give the supplements and diet a try but he’s not there yet to go that route. I’m all prepared when he is ready. Right now with him being on the prednisone and asacol he is real anxious. Have any of you experienced anxiety with these meds?

    He has 3 weeks of the semester left and our family is just praying that he can make it through, 2 weeks of classes and one week of finals! He’s looking forward to coming home and we are looking forward to having him with us. It may be stressful as we have three doctor appointments during Christmas break.

    Thanks again, I appreciate all of you and Adam too!

    • bev December 3, 2012 at 12:14 pm #

      Yes to the anxiety, Lynn!

      I had to take prednisone once for pneumonia, and also I took steroid enemas for the UC for a few weeks during one flare, and both times, I felt like I was freaking out! Very anxious and nervous. Almost like I was on a ‘drug’…mood enhancing that is. And, not having a good ‘trip’, so to speak.

      Cheers:)

  10. geof December 3, 2012 at 7:12 pm #

    take a step back, remind him that to be open to options, doctors and western medicine do not have all of the answers its why they run medical practices, however they are right about a few things. Tell him to get his diet straight, but dont be pushy about it because he is the one suffering through the hell that is this disease, and also try to medically understand that Ulcerative Colitis is an Autoimmune disease – your “the body can heal itself” approach is wrong as in this event the body isn’t healing itself, it is literally tearing itself apart by sending in the immune system to destroy the colon.

    after suffering with this waking hell for so long ive tried many many options, some put me in the hospital, some made me feel better or worse, when it comes down to it there is not finite cure, most medicines work for a short while and then just stop entirely, but for those of us paying attention to trends in pub med, western medicine is leaning towards treating this disease with TNF inhibitors as the first line of attack. so while it is his decision, please understand that we are in a great deal of pain, and this is the future of western medicines progress on the disease.

    that being said I would recommend trying the cheaper stuff like humira before you sit down with remicade, or at least figure a way around the costs… eg enter him into a trial or whatever, we patients already drew the short straw, now they are trying to kick us while we are down and we dont have to take it so dont let them.

    • shelly in maine December 4, 2012 at 7:14 am #

      There are discount programs for pretty much ALL meds. …today they say tnf blockers may be the way to go, but tomorrow it may not…too much uncertainty with the future of meds…so many side effects soooo little time, especially with younger people. CCFA even posted a study a while back about the increased cancer risks in younger populations.
      Anyway…just food for thought and yes diet does matter- anti-inflammatory and definitely probiotics are key.These things may not cure, but they will definitely help!
      Best, Shelly

  11. joe December 3, 2012 at 8:05 pm #

    my doc has me on prednisone (40mg a day), and i haven’t had any stress except when i’m reading about people that are flaring even with meds (my first flare was two months ago, and i was in the hospital for almost three weeks). i’m still a bit underweight, and that might make a difference

  12. Cathy December 5, 2012 at 8:42 am #

    Hi Lynn,

    I’m a mom of a 21-year-old daughter, college student, with UC, and I really do feel for you. I know how much you want to help your son and how painful it is to know your child is having to deal with a nasty disease, esp. while living away at college, with all the stresses of college life (and no matter how old they are, they will always be our children, right?) I too struggle with wanting my daughter to try all of the natural remedies/dietary approaches. Thankfully, she is totally willing to take the probiotics and supplements (along with her Lialda), but as far as changing diet is concerned, that one has been really tough for her. I know that I sure can’t be the “food police,” but I can be there to support her decisions about what she wants to try as far as diet is concerned. Like you said, I’m also prepared whenever she is ready to try any dietary changes like the SCD. I think it can be a very long process of coming to some form of acceptance when being diagnosed with a life-long disease/condition, and everyone processes it at their own rate, as well as family/loved ones of the person diagnosed. Not to sound morbid, but like the 5 phases of grief when a death occurs, denial, anger, bargaining, depression, acceptance, and all or none of the phases can come out at any time. I At least I know that I sure have (and am still) experiencing this to be true. Having a child is truly like having a piece of your heart living outside of your body, isn’t it? Well, sorry if I got a little too philosophical!

    I hope things go well over Christmas break for your son and family.
    Cathy

    • Lynn December 6, 2012 at 7:30 am #

      The asacol after a week is not working (surprise), mucous and diarrehea has surfaced so our son has stopped taking this med. He is going to call the GI doctor today who is going to recommend him try pentasa. Why I’m not sure but again we are letting our son make his own choices. Remember I am equipped with an arsenal of supplements, probiotics and diet when he has had enough meds.

      Cathy thank you for your post yesterday comforting to know there are other people out there dealing with the same issues.

      Our son is coming home for the weekend, he looks like a puffy prednisone marshmallow! I feel his pain on so many levels. He loves to workout and be in shape, he is not there right now. The prednisone is making him so anxious, one more week of classes and one of finals!

      One of my goals is to work on the GI doctor to agree to doing a fecal transplant on our son during Christmas break. While this is looking more like a possibility than it had this summer I still am trying to figure out the right approach to convince him.

      Have any of you UCers ever had any success with fecal transplants done under controlled conditions by a GI doctor? Also has anyone ever heard of Cortef? Someone said it is safe and something you can take by prescription once you are down to 5mg of prednisone?

  13. Cathy December 6, 2012 at 1:01 pm #

    Lynn,

    I’m so sorry your son’s symptoms returned and he’s having the jitters, etc., with the prednisone. I sure hope he will get through finals week OK. I hope he has a nice long break over the holidays to rest up and get healthy. Never good timing to have symptoms flare up, but esp. not during a stressful time such as finals week.

    You asked about fecal transplant – my daughter just had this procedure November 27, 2012, so a week and two days ago. She had been diagnosed with C. diff in July 2012 (diagnosed with UC April 2012) and couldn’t seem to get rid of the C. diff. The GI clinic in our area has just started doing this procedure (she was either the second or third person to have the procedure done here). At her GI consult visit before the procedure the doc did say that, in addition to curing the C. diff infection, UC has also been cured in some cases with fecal transplant (!). I’m extremely glad and thankful that she had the procedure done. As far as her symptoms, so far so good, she says her tummy is feeling “OK” the last few days, and I have not heard her say that in a very long time (months). The procedure itself was very easy (basically an endoscopy, which she was totally sedated for, so no discomfort whatsoever), but the prep they had her do was like colonoscopy prep, not pleasant, but doable. Her brother was her “donor,” so all he had to do that day was show up and produce the specimen, then he could leave. They had to test his stool and blood before hand (which I am told is where most of the expense comes in…we have yet to get the bill, and still unsure whether insurance will cover that part, although I sure think they should, and will appeal if they deny it).
    I sure would recommend giving the fecal transplant a try. As far as I know, there aren’t any adverse effects, other than I suppose the usual risks of the prep and/or the anesthesia.
    Take care,
    Cathy

    • joanna December 6, 2012 at 3:25 pm #

      cathy, how many more fecal transplants is your daughter doing? i did 8 with no effect but i know people who have done over 30 transplants.

  14. Cathy December 7, 2012 at 6:39 am #

    Joanna,

    I’m so sorry you haven’t had results after 8 transplants. We weren’t told a single thing about even the possibility of repeating the transplant procedure with my daughter. I know very little about the transplants, other than what I’ve read on my own and been told by the GI doc during the short visit prior to her procedure. So, 30 transplants, wow. I guess we will just have to see what happens and go from there. Thanks so much for your comment and info. Please take care. My heart goes out to you, and all who have to deal with UC.
    Cathy

  15. K December 27, 2012 at 4:53 pm #

    To be 18 and in the first semester of college, and then to have to cope with this difficult disease, take / try various medications, cope with exams, etc. What a challenge.
    It is now Christmas vacation and I have wondered how things have gone this month. And I hope he is well enough to enjoy vacation and seeing friends home from college.

  16. Wendy
    Wendy May 14, 2013 at 10:52 pm #

    I didn’t read the other responses. It’s late and I’m on the toilet at 12:45 a.m. I would let him decide but try to talk to him. I personally try to take no drugs, but at a certain point, he may need them anyway. It can be like trying to tell a cancer patient with leukemia that he/she can cure him/herself by eating right. Sometimes you cannot do that. He’ll have to listen to his body and understand what is going on himself. Some people need to get their colon removed after having UC a month or two as I’ve read on here and some can go years just on diet. For me, controlling everything with diet works far better. I must use prednisone to get it under control once it flares though (at least it seems this way to me). I was allergic to the drugs I was getting from the doctors and no one would believe me that they were hurting my body when I told the doctors. Finally Mayo Clinic figured out I was allergic to them. Anyway, I think it is good to stay involved and talk to him, but it is up to him. There’s bad side-affects to drugs, but sometimes you need them. Just my opinion. I have an 18-year-old son as well.

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