Crohn's in the terminal ileum - my beloved son

[PnaG]

sorry if this is long, dont mean to be winded but i am so frustrated as a mom, i said yesterday to the pharmacist that i feel like i've walked in hell for such a long time now that the road is getting hotter by the day.

My DS was diagnosed at age 15, i truly believe he has had this since his birth but doctors kept thinking I was crazy when he was a baby, finally they thought he was looking for attention as he got older. Finally at 15, a diagnosis. THAT has not made it easier. He is the 3rd generation with the disease in the family. My other child was diagnosed at age 16 with EE disease. tell ya, when it rains it pours and right now im ready to short circut the keyboard because all i do is cry. we were forced to change docs when my son turned 18. his pedi GI doesnt see adults.
went from GI to GI and finally found one. 1 year ago a colonoscopy ( the 5th in his lifetime) found it "still" in his terminal ileum. he has been on 6MP, pentasa, entocort, so many meds.

get to last 2 weeks: called doc, need an emergency visit son is so ill, pain is a 15 on a scale of 1-10. instead of seeing him, he prescribed cipro. that made him feel more ill. finally , the doc saw him walked in and he said, MY you have lost weight and wow do u look bad. He is white as a ghost, lost 38 lbs and is totally black under his eyes. joint pains, tired all the time and says he "feels like POOP" always. he can belch so loud and so much in a day that if we could make $$$ off of it, we would be millionaires. He is in the potty, 7 - 8 x a day.

working LOL, he can barely make it out of bed somedays, but yes he does go to work when hes able. bosses can only take the " call out of work" so much.

he was released from the hospital yesterday after 3 days. Our GI wouldnt even do a cat scan, xray, nothing. so i took him to ER, they did testing, his BP was something over 41, potasum was low, eletrolytes all low. cat scan showed his terminal ileum was inflamed, scar tissue etc. said it was only at the same place it was 5 years ago in a cat scan.

in 3 days he had 16 doses of pain meds and they didnt take the edge off, finally the attending took him off all pain meds and all crohns meds. ( he did his first dose of HUMIRA a week ago today. )

they released him because they said they cant do anything. 2 surgeons came in, 1 said remove the ileum, 1 said dont. 2 new gi's came in, 1 said remove the ileum and the pain will go away immediatly. the other said he didnt have an opinion 1 way or the other .......... O M G are they kidding ???

even thou he is 20, i didnt leave his side. i dont trust at this point and this is my baby, no matter how old.

after releasing him, we got to the car and he said, ya know i came in sick and in pain and im leaving in even more pain and feel sicker than before.

I have no clue what to do at this point............... totally lost and confused. he cant eat, he vomits it up or it comes out the other end. eating makes his stomach hurt worse, you can hear his stomach making noise 3 doors down. im sure the neighbors know his tummy is rumbling.

ok, so thats the "beginning" of my story. it would take days to write it all.

would love to hear from others that have crohns in the same place, maybe the same symptoms, the dark circles, pain ........something. plz dont tell me we are alone.

 

[DustyKat]

Oh my Mum, you are not alone!!!

I have 2 children and they both have Ileal Crohns and they have both had surgery due to perforations,fistula's and abscesses.

My daughter went undiagnosed for 18 months and was then diagnosed on the operating table 5 years ago. Since her surgery she has been in remission. She had many EIM's including joint pain, sore eyes and headaches.

My son was diagnosed in December and it was very quick, only 2 weeks of symptoms......pain, vomiting and nausea. He didn't develop the any extra intestinal manifestations but he certainly lost weight, was as white as a ghost and had the dark circles. Since diagnosis he has experienced set back after set back which resulted in surgery 2 weeks ago today. I am hoping he has a similar outcome to his sister.

Where are you located?

Is your son seeing IBD specialists?

I'm not telling you anything by saying something needs to be done now. He can't go on like this and you can't go on watching him suffer.

Personally it sounds like getting rid of that crappy bit of bowel is going to do more good than harm. I know surgery is a last resort but sometimes it's what is needed, start afresh and continue to tackle it from there. My son is only early days yet and he is as thin as a stick but I can already see the difference in him.

Good luck and continue to fight the fight, we will be with you every step of the way. Any questions please don't hesitate to ask and remember you are no longer alone with this and there are many here that share your fears, concerns, emotions and experiences. Welcome aboard!

Much love, :hug:
Dusty. xxx

 

[PnaG]

OMGosh that just sent a rush of tears to the keyboard. ty ty ty for your time. I hope ur son does well and that he is on the road to a much needed healthy life.

My son at this point as such a low quality of life that i am frightened for him. I would love for him to see a mental health specialist but at this point, he is sick of being sick and sick of seeing " doctors who know nothing about his illness".

I am on the east coast in NJ. i have been researching new doctors and hospitals. one of the problems is insurance, some take what we have, some dont. please dont think that $$$ is what is keeping me from getting him the best. I certainly begged the insurance company to cover the $6,000 for the first 4 doses of humira. they have agreed to pay for a year of the medicine. now we arent sure if it was the right med for him, he hates the possible side effects. now that we are " in-between" docs, does he give himself the next dose next week ???????????? we have so many questions and so many unanswered things to think about. my brain is fried, as his is.

 

[ameslouise]

Hi Pna and welcome.

I'm so sorry your son is suffering so much. I am 43 and my mom worries about me more now than when I was a kid. She says the problems and the pain just gets bigger as her kids get older!

Surgery is always scary, but so many people feel so much better after having a resection that maybe it would be the best option for him.

Where are you located? Are you happy with the docs? Sounds like you are getting a lot of conflicting opinions.

So where did you leave it with the docs, other than starting Humira soon? What else is he taking? Did they give him something for the pain???

Hope you get some straight answers soon!

-Amy

 

[PnaG]

Amy, the doctor that released im from the hospital gave him 4 days of cipro and 4 days of anti bacterial. we dont have a doctor today. i made calls all day and because he took the first dose of humira the people on the phone today said they wouldnt see him .. HELLOOOO isnt there any doctor out there with compassion?? im beginning to feel , not.

until saturday he was taking pentasa, 6MP, prevacid, cipro . the GI doc that came into the hospital told him he was obviously taking the wrong cocktail for his condition because it wasnt working. its so confusing.

my mom had surgery 25 years ago and has felt great ever since. my darling son is afraid that once he does 1 surgery, it will lead to tons more.

pain meds, NONE he is miserable to say the least. i atleast got him to drink some gatorade and white grape juice. im really trying to keep him hydrated for the time being since he isnt able to do food.

hopefully tomorrow will bring a ray of sunshine and we can find a doctor.

thnx for responses,
Phyllis

 

[Crohn's Mom]

Welcome Pna, and as our sweet Dusty has said...you are not alone!!

I'm so sorry to hear your son is so sick and in so much pain! It really doesn't matter that he's 20, he's still Your baby! My daughter just turned 18 last month and she is definitely mine. But oh the transition with the medical personnel, and trying to convince them to talk to me, has already been a pain to say the least!

My daughter was diagnosed a little over a year a go, but we are convinced (and now so are her doctors as well) that she has had CD since she was 9 years old and they first suspected it. She has been through the ringer like your son; and yes, she has had the weight loss, dark eyes, pain (oh the pain), dehydration, etc. She recently (1 month a go) had major surgery to remove the damage in her that has been growing for 9 years untreated. Similar to Dusty's daughter, except we knew what was wrong with Gab, they both had major surgeries. Although Gab is not back to perfect health yet, she is slowly getting there, little by little. However, if your son were to decide to go ahead with surgery it would probably do him a world of good to get that diseased piece out; and even better to do it while it is still a small area.

I know how scary it is to think about; I truly do. Sometimes it can be scarier to think about what can happen if it continues to grow tho. Best of luck to you both with whatever you decide. I am sure your son appreciates your love and help; and needs and wants it just as much today as he did when he was just a wee lil one

Hang in there hun, and if I can help in any way, I am here for you. There are some amazing souls in this forum who are wonderful at giving advice (much better than i).
Keep us updated and let us know how the doctor hunting goes tomorrow! :kiss:

 

[Keona]

WOW PnaG
YOU are an inspiration
First off..I like how you made the analogy...I am sure so many can relate. YOU ARE NOT ALONE :ghug:
Your son is lucky to have you on his side! I think he has suffered long enough as well.
Have you tried giving him pedialyte? I heard that is better for dehydration than gatorade. He sounds to be in rough shape and I am sorry to hear the doctors let it get that far... shameful!
There are a lot of parents on here with amazing strength and knowledge to share with you (eh-hem...see ^^). When you think it wouldnt get any better... it does!! I have heard some amazing stories that it is hard to believe (but I do)...
hang in there... I cant wait to hear that your son is getting the help he so deserves... and is back at work doing well.... your turn is coming
I am so glad you found the forum! Makes me smile that now you no longer have to feel alone
Wendy xo

 

[Dexky]

Welcome Phyllis!! Wow, to be dismissed like that when his illness seems so obvious has got to be incredibly frustrating. Most people want second opinions but to get two conflicting opinions at once, one of which says surgery is the best option, then to just get released and taken off his crohns meds...what the %&*%??? I think it's about time to get pissed!! Good luck!!

 

[DustyKat]

I haven't had any experience with Humira but since your son is between doctors and that is the only medication he is on I would continue to take it.

Is there any hospital you can go to that has Crohns specialists and surgeons that work in a team?

The lack of pain relief is a concern and it must be so difficult for both of you to deal with. I so hope you can find a doctor/team ASAP and your son can get some relief and on the road to recovery. Good luck and keep us posted!

Take care, :hug:
Dusty. xxx

 

[beth]

It's obvious that your son was not responding to the previous meds. As much as I loooove Humira, it is my friend/saviour/$deity/etc, it cannot work miracles and surgery may be the best option. I'd still continue the Humira, it's really the only effective thing you have right now. I hope he had the full 4 loading doses? and is ready for another 2 loading doses in weeks time?

Docs really turning their back on you because he's on humira! that is soo out of order it's unreal.
Find yourselves some proper medics.

 

[PnaG]

Morning,
Beth yes he had the full 4 doses, the GI's nurse gave it to him. the next 2 are loaded and in my fridge. docs office had offered to keep it for us BUT i wanted to look at it and the box, heck there arent to many things in my home that cost 6 grand ( LOL ) . again, morning joke to get me thru the day.

I'm so glad to hear that the humira is working for you , congrats

Tracy, Wendy, Mark, Dusty, thank you all for your kindness. To hear all this positive news, to know that you or your children have gotten thru the hard times makes me feel like there is light at the end of the tunnel.

I did contact a hospital after researching on the internet, waiting for a call back.

I saw some posts about other hospitals in New York, i have to contact my insurance today and see what they say about going out of network.

wishing you all a Blessed Day
Phyllis

 

[Keona]

Good Morning Phyllis
I agree with Dusty - the pain needs to be dealt with first. I had to see about 15 or so different doctors before they finally listened and that was only because I had an advocate with me. I think there is a huge disconnect with doctors... poor communication between all involved ..
Does your son have a dietician? Not sure if that would help any.
I think when you are THAT ill and depleted of so much energy it is very difficult to advocate for yourself. So, when you made the comment about, "even thou he is 20, i didnt leave his side. i dont trust at this point and this is my baby, no matter how old" - that totally resonates with me. It speaks volumes that doctors no longer take the patients word for it yet will take the advocates... boggles my mind... I wouldn't have left his side either..
I hope you get your call today... can I ask what your son's name is?
Take care
Wendy

 

[HeatherMN]

Not sure where you are located, but there is a website www.myhumira.com where you can sign up for the Humira Protection Plan, it's a prescription assistance plan that helps with copays or covers it if your insurance won't. They have a phone number on there if you don't want to sign up online.
Without the plan, my co-pays (with insurance) were about $1000; with it, I pay $5.

 

[ThingsHaveChanged]

i kinda relate to a lot of what you said only as the son, i had rumbling appendix apparently throughout my childhood but without ever having any inflammation of the relevant areas, this pain moved on and the doctors approach was to accuse me of imagining it, regardless.

I avoid speaking to my family about Crohns these days, its all gone on for so long and I know they would help if they could but all telling them achieves is depressing my parents.
I know they feel guilty for ignoring the pain on occasion, though after a doctor told them im making it up and that there is nothing wrong with me it isnt that surprising.

Im 27 now, education was destroyed and now Im stuck, i admire anyone who manages to work with Crohns so kudos to your lad, i worked for 2 years as Crohns was really taking hold, it was daily agony and i worked solely to come home and lay down in pain (and maybe do a tiny cry).

mine is in the terminal ilium also, im yet to get any better in the years since diagnosis and have yet to see any results. Id be more than happy to share any information about my experiences with Crohns if you want to PM me, im really sorry for anyone with this disease and i sympathise with all those i know have it worse than me, sorry if i sound whiney.