Mad Mom – My Son’s Still in the Hospital

Introduction:

I am the mother of 14 year old boy, diagnosed in July 2013 with severe pan-colitis. I am interested in natural living (maybe a little “crunchy”) and the healing ability of the body when given the appropriate resources, so being forced into the medical system has been more than disturbing for me.

My Son’s Colitis

My son has been in the hospital for nearly a month now. His symptoms started in May 2013, he spent a week in hospital in July after colonoscopy and blood work. Transfusions, infusions, steroids ensued. Nothing changed when we were discharged. Though symptoms subsided for about a month in September, after adding in alternative treatments, until he ate a bunch of junk and things flared again in October.

Currently he’s on 40mg of prednisone, waiting for Imuran to kick in, after two plus weeks of IV nutrition. They are starting Remicade tonight because he won’t stop bleeding, with loose bowel movements 3-5 times per day, though he’s gaining weight back and there is no pain or spasms at all.

I feel PISSED. I am tired. How could surgery be the only option for something they don’t know the cause of? I have been away from my other children for nearly a month now. My son immaturely scoffs SCD, though he doesn’t want surgery either. I want to SCREAM. I am stuck in this hospital. Stuck between knife wielding doctors and an immature son.

Why am I the only one fighting so hard to save his colon? Because he can’t see past today and his desire for a cinnamon roll, and I am certain, if this leads to colectomy, that he will have wished he’d tried everything when he’s 30. Everything in me just wants to get out of here and go see a functional medicine doctor. But we can’t leave because he’s losing blood (hemoglobin dropped 2 points in 3 days).

I vacillate between prayer and research. I angrily gave my 3 cents to God after the Remicade decision and now I can’t stop crying. I should probably leave the room; the tears upset my boy.

I am thankful to vent because I have no one to talk to here.

written by Stanley’s Mom

submitted in the Parent’s Venting Area




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12 Responses to Mad Mom – My Son’s Still in the Hospital

  1. Adam
    Adam November 15, 2013 at 7:06 am #

    Mom,

    I’m super sorry for the frustration and most importantly that your son is not getting out of the hospital and feeling better. But you’re fighting an uphill battle that way too many UC’ers (and their families) have to endure. I’m referring directly to the whole diet is important/ diet is not important way of thinking. I’d bet all the money in China that if the doctors are telling your son diet is not a factor in his UC, then no matter what you think, he is probably going to listen to them. Until something changes. And that’s unfortunate because DIET DOES help a ton of us. Myself included.

    Here’s the twist though. I myself scoffed at diet, JUST LIKE YOUR SON, until I finally met a girl who also had UC, also tried tons of medications, and also had poor results with western med. She treated her UC with diet, and I believed she is the reason I still have my colon and live medication free.

    I’m sending you my ebooks to read. But I really hope you will get them to your son, he can probably relate quite a bit to my story, and I’ll bet there are several recipes in the cookbook which is also included which he’ll like (maybe even better than the cinnamon roll – which I would NEVER EAT now).

    Thank you for sharing, and I wish you and especially your son the best moving forward,

    -Adam

    • Stanley's Mom November 20, 2013 at 11:23 pm #

      Thank you Adam. I will definitely have him read your books, and I look forward to them as well. We met a girl.his age in the hospital with “severe ulcerative pancolitis”, as he has. She wasn’t on any diet modification and wasn’t getting better. That and prednisone side effects led to a colectomy. It was right there three doors down. This is real. I am gearing up for SCD with the whole house. He has already read The Maker’s Diet and BTVC. He’s so smart, finicky/particular intellectual type. ;)

  2. bev November 16, 2013 at 8:35 am #

    Wow…wow…I sure can feel the pain and frustration.

    I feel the same way…that colon removal does not have to be the final result. That’s the thing with we women…we think ahead and you are right….will he later regret anything. What a dilemma for you. You must be going crazy over this!!

    One thing I always tell everyone on this site….YOU are the boss. Not the doctors. You have all of the power…of course, that’s a huge responsibility, but you do not have to do anything that you do not want to do.

    I have had UC for over 15 years, was on meds for 13 years straight…all they ever did was make things worse and although I did not know it at the time because my doctor said it was the UC, I was not tolerating the meds at all. I am on a good probiotic, which MUST be taken on a completely empty stomach and then no eating or drinking anything other than water for at least half an hour, and fermented L-glutamine. The probiotic will replenish the good bacteria in the colon and the L-glutamine actually has properties that heal the ulcers.

    I have not looked back since I decided to stop taking meds. Most of them are dangerous anyway and who knows what the long term side effects will be. I cannot, for the life of me, understand or believe that all of these UC meds are still being prescribed and used because for 99.9% of us, they either stop working after a period of time, or they fail to work at all!

    I would check into fecal transplants…the only thing I believe will work. They have been shown to put UC into almost permanent remission! We should all be on this treatment, and I think that `they` are working on it in a `nicer `form.

    Cheers, and I think you are a wonderful, thinking, caring mother.

    Bev

  3. John D. November 16, 2013 at 9:50 pm #

    #1 piece of advice. Stick to a liquid diet. Force him. Buy a juicer and juice everything. It can save him much pain and aggravation, and maybe even save him from surgery.

    I was diagnosed with UC about 8-10 months ago. I spent the past month in the hospital with a terrible flare. I lost 45 pounds. Multiple colon biopsies just came back – all negative for UC. I’m still confused as to why, but I think they finally got the diagnosis correct. I don’t have UC- and never did. It seems I have/ had a major infection in my colon that is not related to UC or Crohns but started a year back and was never dealt with properly. (meaning it never healed) Doc just took me off of Asacol and cancelled me starting on Humira. I am curious to know if there are others out there who may have been similarly misdiagnosed. 98% of my symptoms fit, so multiple GI’s told me it’s UC. But the biopsies told a different story, so they repeated the biopsies and cleared me of UC. At this current time, I’m home, thank God, but VERY VERY weak. Still only juicing, and supplementing with protein drinks here and there. Seeing a surgeon on Monday to see if I can keep my colon intact. Hopefully it’s healed a bit since I started juicing.

    Only within the past few days have I begun to understand what sets off my spasms (and they’re bad). It’s from hard poop, or actually any poop for that matter that has to push through the narrowed walls of my inflamed colon. I was popping morphine pills non-stop until I went all juice (10 dilaudids a day), and today, almost none. So it’s definitely working. I only wish the GI’s would give me more direction earlier in terms of the importance of Bowel Rest.

    Also very important is to get up and around in the hospital (muscle atrophy). I’m learning the hard way as it’s hard to even sit in a chair and type for more than a few minutes.

    NOTICE if they say it’s UC- I would take their word for it. It’s very rare to be in my situation apparently.

    I wish your son a speedy recovery. Don’t let him do what he wants, (handcuffs??). And I wish the best to everyone on this site. I actually gained many insights from this early on my “mis-diagnosis”, and am thankful to it’s creators and contributors.

  4. Mark D
    Mark D November 18, 2013 at 10:26 am #

    Mad Mom-

    A few quick notes… I did not expect to be on the site this morning but I read your post and feel for you and your son.

    I have had UC for 35+ years (diagnosed at 18) and along the way have had some doctors suggest surgery. I am healthy (except for UC and drugs) and athletic.

    I did not hear about anything like SCDiet until 5 years ago, then I scoffed at it for 4 years, aided by the neutral position of most/all MDs. Now I am on the diet for almost 6 months and note a pretty big difference. But I am not one of the ones able to stop meds. Not yet anyway. My favorite food used to be cinnamon rolls. No more. no starch or sugar. I make and eat SCD almond meal muffins and pancakes every day. You have to get used to the graininess (and to tolerate tree nuts)

    I still take a course of prednisone a couple times a year but never above 20mg to start. And I take other stuff too. Imuran helped. I never know if Lialda does but I trust my MD on the meds. Just don’t expect MDs to have an opinon on diet because they do not have any evidence that diet “cures” the disease. But if it improves the symptoms and the symptoms eventually lead to remission that is enough for me. And for some folks on this site that is almost a cure.
    I have to say that 30 and especially 40mg prednisone is a LOT and it has really negative side effects, mood being the worst IMO. And take the tapering off very seriously. I can really tell the difference if I start at 30 vs start at 20. But in my bad flare days, 20 was never enough.
    Prednidone really stimulates appetite so best to try to have something safe to eat regularly and not gorge. Bananas are a must for me when I am on prednisone because of pred seems to eliminate potassium and give you cramps. Years ago I also had a recommendation to take “metamucil”- counter intuitive I know- and that seems to help calm a raging empty gut. best to find it without the sugar or artificial sweetener and mix it with juice. To a 14-year old it will seem worse than gross, but hey.

    I started the diet when faced with a recommendation to start Remicade and to try one more thing to avoid it. My symptoms have not been as bad as your son’s, except maybe at the beginning.
    I’ll be praying for remission for you, but UC severity is so different for different people that I worry about even giving recommendations since they may not apply well.
    Hang in there mom.

  5. Dal November 18, 2013 at 10:56 am #

    Hi. Teens can be tough. I was 5 when diagnosed with UC; now 34. Spent a lot of years in the hospital. Perhpas your son is scared more than anything else and reacting in a “don’t care” way. SCD Works! And when I flare I first go on a liquid diet and juice everything; you get weak so you need to rest, but it works well, and then when the bleeding stops, you go on SCD Diet. Add L-Glutamine, and chlorophyl (spelling?) to your juice, not too much or you’ll be pooping more, add little by little to know your tolerance. Western medicine works, but side effects are huge and sometimes the medicine will no longer work. Personally I’ve been on Asacol for as long as I can remember…. I don’t even think it has any affect on my colitis.

    Your son needs to realize the importance of this disease. It can be very serious. It can go beyond the intestines, beyond the colon. Become the Terminator Mom, and tell your son this “Come with me if you want to live.” =)

    Break the disease, don’t let it break you.

    Good Luck.

    Dal

  6. Sharon November 18, 2013 at 2:05 pm #

    I am writing this from my hospital bed so in a way I understand your frustration with this disease. Because it is your child though I can’t imagine your feelings of helplessness. After 20+ years I eventually failed on all the meds and finally tried the gaps diet cor a flare in September. Having been on prednisone 4 or 5 weeks and getting worse, I started the gaps diet Sept 5th. Within 2 weeks I had no blood. Diet worked wonders shocking my doctor. Btw, I am in hospital for thrombosis hemorrhoid, access, and fistula. Not flaring yet but crossing my fingers.

  7. alicia November 18, 2013 at 6:48 pm #

    I think this posting is so real and helpful to those of us who can not express our feelings as parents and watching our teenage kids with this disease. We are forced to watch them learn by making their own mistakes at the expense of ourselves, their siblings, and our spouses, and exteneded families (who don’t have a clue what our children are dealing with on a day to day basis). I am angry. I spend money on a psychogist for my child but I need one too but don’t have the money. We have been to multiple psychologist due to horrible medical system in this country. Scary that these kids are put through this system. The main thing that helped my child keep out of hospital was maintaining good weight, Remicade, Prednisone as needed. Diets result in loss of weight then no meds work and we are back in hospital. Everybody has a different story of what works for them. This disease is so taxing on the child with UC and the caregiver. Thanks to this mom for sharing pains and helping the rest of us.

  8. Barb November 20, 2013 at 9:18 am #

    Mad Mom,

    So sorry to hear about your son. I can totally relate to your frustration. I have been battling UC for 15 years. I am now on Remicade seems to be working. I also take a probiotic in the morning. I know it stinks to have to stay away from certain foods and I am 44. I can’t imagine if I was teenager and had to change my lifestyle but in the end you do feel better and worth the change and he will feel so much better.

    I have a shake in the morning with almond milk and banana or you can add peanut butter whatever you like honestly they are pretty tasty. I have so many different ideas if you want to email me if you are looking for some recipes barbbque17@comcast.net.

    Praying that the remicade will work for your son, Please keep us posted.

    Barb

  9. Stanley's Mom November 20, 2013 at 11:46 pm #

    Thanks everyone for the advice and helpful responses. I should say my son was discharged Friday, after 4 weeks in hospital. Wednesday.was his first day without TPN and they also started the Remicade at 8pm. THAT NIGHT was the first in a few weeks that he didn’t wake overnight for a BM and he hasn’t bled since. Could Remicade work so fast? I also suspected the TPN ingredients as I read it is high in.sulfites, and he has shown exacerbation of symptoms after high sulfur foods. That’s another food issue kink, all his food intolerances…nuts, dairy, eggs, bananas…

  10. Maryann jane November 21, 2013 at 9:19 pm #

    My 26 year old daughter has pan colitus for 3 years-her meds worked well for one year then stopped. She started bleeding and had 20 plus movements for 8 months. In May 2013 she was hospitalized and they discusses removing Colin. She was off work for 3 months and moved home to try to improve health. Despite being told diet has no bearing by dr. We started her on scd with 24 hour yogurt. Within 4 days her bleeding stopped-10 days she had formed bowel movement-first in 8 months. At 2 months her inflammatory markers fell from over 900 to .4. She is on 1 mg of prednisone and hopes to be off shortly. She is taking remicade but the diet has truly been miraculous for her. She is back at work and enjoying life.

  11. Allison-3
    Allison November 30, 2013 at 5:35 am #

    Hi there.
    I am so sorry to hear all that you and your son are going through. I have a 14 year old son and they are stubborn little bastards…. Hah! He does not have UC but definitely has gut issues as well. He eats SCD at home and cheats a bit in public.
    With that said, I was diagnosed 4 years ago with UC. The first book I read while in the hospital was Breaking the Vicious Cycle. Here I am reading about this strict diet while my doctors are telling me diet has no effect on UC. The nutritionist just told me to drink ENSURE…. gross.
    So, I gave SCD a half-hearted try but I was on so many meds at the time that it was hard to know what was happening and I gave it up. A year later, I decided to give up the meds because I felt terrible ALL THE TIME. I made a 100% commitment to SCD a year after that and within a week or so I actually felt GOOD for the first time. And now I feel great. I have a full life again.
    If you start with the intro diet and slowly add foods in, it will be obvious which foods cause a reaction/symptom for your son (gas, bloating, etc.,). For me, I still can’t tolerate eggs or dairy and I had to wait a long while for nuts. Check out
    http://www.automimmune-paleo.com She offers an easy to follow protocol to determine our individual food sensitivities whilst following SCD.
    I make goat or coconut milk yogurt every week and have a delicious smoothie. My boys love smoothies with lots of honey, banana and mango. The probiotics and fermented foods are essential! Also, the fermented l-glutamine powder (BEV’s favorite) totally firms things up… go slowly though.
    I wish you guys all the best. Have your son search youtube for other teens’ stories and their experiences with SCD. For me, this site has been a beacon of light and hope in dark times. I still read it every day. I promise things can get better.
    Allison

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