Ulcerative Colitis Tips


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My Son’s Struggle with IBD

Introduction:

My name is Jade I’m 29 & a mother to two amazing kids. Tyler who is almost 11 & Ryleigh who is almost 3.

My Son’s Struggle with IBD

My son Tyler presented symptoms of what we thought was a nasty stomach virus on March 24th the usual abdominal pain, nausea, vomiting & diarrhea. but buy March 29th he got worse & I called an ambulance after he went to the bathroom & it was all blood.

We were admitted to the hospital that day with a diagnosis of severe colitis. They immediately put him on IV fluids, complete bowel rest (he didn’t est or drink for four days) & nausea meds & Tylenol for pain. they ordered stool cultures to check for different bacterias which all came back negative. we were discharged after six days & were told to go home & manage symptoms at home until we could see a specialist. we saw a specialist a week later & she confirmed our worst fears. Tyler has IBD she said she would need to do two scope procedures an endoscopy & colonoscopy done at the same time to determine if its UC or crohns, however she is confident its UC. He is not scheduled for the scopes until April 30th & we were again sent home to manage symptoms with out meds until scope procedures (I am weary of the meds) because meds could alter the scope results.

We were managing the symptoms ok at home until about two days ago when his pain increased again & his stools went back to being all blood. we had been managing his symptoms ok with strict diet change (low residue, gluten free & diary free) as well as taking a probiotic everyday & vitamins. My son hasn’t been able to attend school since this all started & we don’t know when he will be able to return. I’m feeling very frustrated as he is too because it seems to be taking so long to get answers and help. we are day 24 of my boy suffering. I don’t know what to do & I’m afraid of the damage it is doing to my sons insides. he is so young to be robbed of his childhood & I feel like we could be getting better quicker treatment. I� 39;m not sure what I’m looking for in this post, support, encouragement, advice anything really would be greatly appreciated. thank you.

written by Jade

submitted in the Friends and Family of Colitis Folks section




6 Responses to My Son’s Struggle with IBD

  1. Jade April 28, 2013 at 12:31 pm #

    Update: my son had his scopes done and the biopsy results came back.his rectum & colon seem to be showing the worst of the disease at this point, however his stomach is showing inflammation as well.the specialist said that she was comfortable with an ulcerative colitis diagnosis but felt that somewhere down the road his diagnosis would change to crohns disease.she immediately started my son on the asacol enema & also wanted him to take the oral form of asacol too because she felt his disease was severe enough to put him on both. We started the enema first while waiting for a prior authorization from our insurance company for the oral pills but heended up with really bad side effects from the enema & we had to stop it immediately. The doctor said not to do the enema anymore or to start the pills. & that she was going to try to find something else for him to take. She called back & said she was prescribing him pentasa however we went to get it filled & none of the pharmacies in my area even had it in stock so we haven’t been able to start the new med. We go back to the specialist tomorrow morning & hopefully they will have a better plan as he is still having symptoms still is out of school & we have n ideaf when he will be able to return. I’m beginning to worry that he will end up being held back & have to repeat the fifth grade again because of all the time he has kissed from school. We do have a tutor coming a few hours a week but its no where near enough to make up for the time he has missed. We are still doing the special diet as well as gluten free & diary free & also doing other natural things to try to manage & control this but don’t seem to be having much luck. He has lost so much weight, he has no color, or energy & is really depressed & frustrated. I’m feeling the sane way. I really hope the give us some better ideas tomorrow as to how we are going to get this under control & get Tyler’s life back. Has anyone else had horrible side effects from the asacol enema & or asacol pills?  

  2. Megan from Australia
    Megan April 28, 2013 at 6:11 pm #

    Hi Jade,

    I don’t know what to say except that after the scopes it can only get better with more certainty around treatment. Hang in there!
    xx

    Megan

  3. Tim April 28, 2013 at 8:42 pm #

    Jade,

    I’m sad to read about your son’s diagnosis. Having UC is difficult for an adult to manage. I can’t imagine how it would be for a child. I’ve had UC since 1991 and have tried about everything there is to treat UC. My advise would be to research and find a GOOD pediatric GI physician. The goal is to get your son in remission a.s.a.p. what ever it takes! I believe his quality of life is important here. Once remission is obtained. You can reasearch natural supplementation to determine what works for your son. For example, fish body oils, EVOO, L Glutamine, coconut oil, evening primrose oil, phosphatidylcoline, probiotics and the SCD diet …. just to name a few. Hopefully with some of these you can eliminate or reduce the pharmaceutical drugs most likely prescribed by the GI doc used to get your son in remission.

    GOOD LUCK!

  4. Artie April 29, 2013 at 3:17 pm #

    HI,

    First let me say that I am so sorry to here about your son’s diagnosis. Having one’s child come down with a chronic condition is a worse fear for a parent. I freak out when my kids complain about any stomach pain so I can only imagine how terrible this is for everyone.

    In my non-dr opinion, this sounds like a job for Remicade. Has your dr brought it up? I know there are a lot of negative things about remicade on the internet but believe me that most of the positive things do not get posted. For example, at my GI’s office, they actually have about 200 patients who get infusions there (that’s one small office in Orlando, Fl) and all of them are doing well. The drug may not work for some (including myself) but it’s def worth a shot early on to see if it does work. When it does, it really works well. I was amazed by the story of this young woman sitting next to me getting infused. We talked for two hours. When she was 16 she had ulcers from her mouth down to her rectum. Remicade gave her life back. After the 4th infusion for her, she was so much better. Today, she is on her 52 infusion and has zero complications. She is a teacher too so you can imagine how many germs she is exposed.

    Also, I am a big believer in natural methods as well, but sometimes you have to do both until things are under control.

    Artie

  5. joanna May 2, 2013 at 1:16 pm #

    hey jade. this disease is definitely torture. your son’s health is the most important thing right now and he should worry about school when he is better. it’s his life- school will always be there for him to go back to.

    i also have inflammation in my stomach but my doctor says UC can cause this, too. basically, when one organ is sick, it can cause the other to go haywire, too. it doesn’t mean that it’s crohn’s disease.

    since he is doing great diet modifications, has he tried yogurt/kefir? i use coconut milk and goat’s milk to make them and i really think they help my gut a lot.

  6. Jackie May 2, 2013 at 1:47 pm #

    Hi Jade
    My son is 12 and has had UC for a few years he takes Pentasa twice daily during a flare he also takes Prednisolone .Your son will get better sometimes it feels tomorrow never comes just focus on the good days .Remember how he was before he was ill and one day he will be the same again.My son lost weight too and dosnt really eat we met with the dietitian and she prescribed Procal shots maybe you should ask to see a dietitian too
    Jackie x

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