Update on my daughter

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Victoria816

Victoria816

Joined
Aug 6, 2013
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My daughter had her colonoscopy and endoscopy with several biopsies. We will have biopsy results by the end of the week, but they are starting treatment for Crohn's. She was extremely inflammed, the pictures are disturbing. Starting 40mg ofPrednisoneand then treatment once she tapers off that. Doctors gave her a bunch of vaccines and tested for tubercu. Again, I can't even process this yet and am so worried and heart broken for her. Any and all advice, support, anything is appreciated. She is really weak, nauseous, and tired tonight. I'm sure I will become a regular on here.
 
Welcome.
I'm sorry you had to find your way here but happy you found us.
This has been a wonderful place of support for myself and many others.
You both need to take time to let all this sink in.
It will get better but..........................
theirs still battles with this disease.
Those are the times were here for. All theses Dads and Moms that know what your going through.

May I ask how old your girl is and where her disease is located (that you know so far).
 
She is 20 and I am not sure where. I have the paper work, but get anxious every time I look at it. I know her colon looked ok. Her lower intestines and I believe some of her small. I know one area is 1.5 cm and they had a hard time getting the scope through. Ugh.... I am struggling tonight.
 
Its so tough you just want everything to be okay they had a hard time getting the scope through for me to I had so much scar tissue. But took his time and it went okay I was awake for this one that I just had in April the one in March I was knocked out!!! Positive thoughts and lots of hugs!!!! Keep us posted!!!!
 
:ghug:..I'm sorry to hear that your daughter is struggling...I hope she starts feeling better soon.

We're here for you anytime.:hug:
 
Seeing your child, even an adult child, in pain and suffering has got to be the hardest thing for a parent! :( My son was diagnosed at 16 and it was all surreal, overwhelming, heartbreaking and scary! But, you've found a fantastic support system here and lots of knowledge and understanding.

Once your daughter begins treatment, you will, hopefully, see improvement quickly. My son did well on his initial treatment and that, in itself, brought hope that all my fears wouldn't come to be! For some, there is some trial and error to find the right medication, dosage, etc. but know that it will get less scary as time goes on.

That they are testing for TB and giving her vaccines seems that they are preparing to use an immunosuppressant or biologic medication. Live vaccines are not allowed while on these meds so they are probably just making sure she is up-to-date on all vaccines.

I have no experience with pred but, from what I've learned here, it can work quite quickly at controlling the inflammation. They will probably start your daughter on a maintenance med before ending the pred as many of the meds take some time to reach therapeutic levels.

There's a lot of information to process at the beginning and, at a time when you are already overwhelmed. Feel free to come and ask questions - there is a wealth of information here!!

Also know that crohns affects everyone differently! Everyone has different symptoms, different reactions/responses to treatments, some find diet changes can help, etc. Take your time in learning... :ghug:

Hopefully, by tomorrow, the effect of the scopes will be over and she will feel a little bit better.

:ghug:
 
Hi, sorry to hear about your daughter. I hope the medications start working soon so the inflammation can be brought under control. You might want to have a look into the EN (enteral nutrition) section as it is very effective in relieving inflammation and giving the stomach/intestines a good break and chance to heal. If her doctors are not recommending it now, it might be something to keep in mind for the future. Good luck with everything.
 
How are things going Victoria?

As Tess has said, with the regime of tests and vaccines they would be looking to start her on immunosuppressives or biologics which given your description of what was seen would make sense. If they lean toward the immunosuppressives be sure they are started very soon as they will take at least to become fully therapeutic so are mean't to take over where the Prednisone leaves off.

I agree with perhaps looking into some Enteral Nutrition. It may well help to settle things for her and at the same time give her complete nutrition if she is going trough periods of not wanting to eat.

Dusty. xxx
 
Hi Everyone,

Thank you again! Things have been better the last couple days. Prednisone seems to be working as she hasn't thrown up since starting it and is starting to have somewhat of a normal, not just mucous, bm. As I type this though she is snuggled up against me.... insomnia, leg pain, and nightmares have started. I'm fortunate that she has a boyfriend of three years that is trying to be supportive. I know he is scared/ worried/ probably annoyed at life for dealing this Crohn's hand to her. He sleeps here, it's like we are taking shifts with her. He comes in at 12:00am and I go to my bed until she either comes to get me or he leaves for work.

It's tough because she hasn't researched much about it and went to a friend's last night only to come home sad, crying, annoyed. They made pizza...how rude, and read all about her disease out loud. I want her to be informed, but she is the last person who would ever work in a medical field. Needles make her go into hysterics, any type of procedure makes her throw up, she is not meant for this world. My poor baby. I wish we could switch intestines......

I will be awaiting the doctors call today with biopsy results...Why do they take so long? They will want to start her on Remicade and 6 Mp? I read about these medications and my body then goes into a panic! Why do they start with such harsh medications?

I am going to buy a juicer today and am going to make her some healing juices. I read some about enc, which sounds amazing except she would NEVER go for it. I've never seen this girl pick her nose nevermind out a tube in it down to her stomach. This whole world is out of her comfort zone.

My daughter has started a blog about it. She deals with things through humor and Ihave to say, it's pretty funny. She is the most private person I know, especially about body functions. I've never heard this girl pass gas and now she is blogging about it and her experience so far with her medical team.

This is where we are. As a mother, I am terrified internally, but strong as a brick house externally. I just keep reading and reading and then I read some more. My eyes are so tired.

Again and again I thank you all fot your words and support!
 
Oh Mum, what a difficult and heartbreaking time for you all. :ghug:

I don't think there is anything worse than the waiting and if you are anything like me then your imagination will be running in overdrive 24/7.

You are not wrong in thinking that the medications are scary and harsh but then Crohn's can be just as unforgiving and in some cases even more so. :( It can be a silent and insidious disease, simmering away inside while those of us on the outside have little insight as to just what it is doing. Not to frighten you but at its worst it can be deadly and I very nearly found that out with my own daughter, this is the exception though just as the worst side effects of these are. But that is why the drugs seem so harsh Victoria, it is to stop the disease in its tracks and keep it there for as long as possible thereby greatly reducing the risk of long and lasting damage. It surely is akin to trading your soul from one devil to the next and it is very apt to say better the devil you know than the one you don't and untreated or under treated disease is the one you don't want.

Your daughter sounds like she getting a handle on things Victoria, bless her. :heart: And you are doing a fab job yourself! Keeping doing exactly what you are and you will undoubtedly become the best advocate for your daughter that you can possibly be. Good luck!

:hang:

Dusty. xxx
 
Results are in and she has a severe case of Crohn's and we need to start two different types of medication asap. Remicade and 6 MP. My daughter is beside herself. She HATES needles and the side effects are scaring her. We have the weekend to discuss, research, and can also meet with her doctor on Tuesday to go over the medication if she wants and if not they will start asap. = sick, scared, and sad mom

I need a support group all my own and I am thankful to have found you all!
 
Oh my Victoria, my heart goes out to you both. :ghug::heart::ghug:

You know, as much as I hate saying because saying it sounds awful and not what I intend it to be! :lol: But in the time after my daughter was diagnosed I use to say to my partner...I am glad it is Sarah with Crohn's...and I said that because I really believed that she had a far better capacity to deal with it than Matthew ever would. He hated all things medical and especially needles! Good grief, the amount of times I was prising his fingers from the ceiling when he went for his immunisations! It was awful. Then he was diagnosed, and lo and behold it turned out that his swift diagnosis turned into a nightmare of complications and hospital stays, far, far more than Sarah had to deal with. As it was he up and amazed me and coped like I wouldn't have believed possible. Needles everyday, procedure after procedure, a drain in for 3 months...well you get the picture.

I know it is hard to take a deep breath right now and as for the light at the end of the tunnel, well it isn't even in sight! But it is there mum and it will get better, truly it will and in the meantime will be right along side you!

Good luck hun and know that you are in our thoughts. :heart:

Dusty. xxx
 
(((Hugs))) Victoria.

Just reading your posts brings me back to when my son was diagnosed and all of the fear and uncertainty we had. I felt like life as we knew it was gone and I think I cried on and off for 3 weeks. It takes time but things get better and you adjust.

The medication is scary and overwhelming at first, especially because it feels like you have to make a decision while you are still processing a diagnosis. I just kept telling myself that we would give it a try and if it was really that awful we would at least have time to research our options. It turns out that 6mp worked well for our son and now I hope he can stay on it as long as possible.

You will get your girl back, it takes time but you will get there.:ghug:
 
Hi Victoria

My daughter (16 yrs old) was recently diagnosed in April. She had a severe presentation and has been in the hospital 6 times! It is scarey!!!

She just had scopes this week for the first time because she was too high risk before now for the procedure. I'm waiting test results and doctor's recommendation for management.

I've read non-stop all these months. The forum gives me TONS of talking points to use with our doctors. This is a great place to be.

I'm sorry that we are all here, but I'm thankful this information exists.

Hang in there!

(((hugs)))
 
Do you feel like Remicade and 6MP are the right place to start? I just don't underdstand why they start with such potent drugs first. I know I keep repeating myself. I do believe I'm driving my husband crazy. He hasn't researched at all and I'm consumed by this. Woof!
 
There are two schools of thought that exist.

Before the biologics (Remicade, Humira, etc) were on the scene there was a one approach fits all type of situation which is now referred to as to the step up approach. Of course choices in past years were limited so it made sense to start with Prednisone to stop the disease in its tracks and hopefully gain remission and then move to the first rung of the ladder which is the 5ASA's, a mild drug in the scheme of things. If and when that failed you then moved onto the next rung and the next class of drug, the immunosuppressives (Imuran/6mp/Methotrexate). For a long time that was where it ended and continued issues resulted in repeated doses of Prednisone which is far from ideal and for some people Prednisone was the only way of controlling the disease. For others it mean't repeated surgeries or both.

Now the problem with this approach is while each treatment is failing intestinal damage continues and the longer it goes on the more irreparable it becomes and the likelihood of complications increases.

Enter the biologics and a new way of thinking which is termed the top down approach. The idea is when you have someone that has been diagnosed with moderate to severe Crohn's, as your daughter has, there really is no point in starting with the 5ASA's as they are not strong enough to control the level of inflammation present and in persisting with this type of medication inflammation is allowed to continue unchecked. By starting at the top rung of the ladder you are hopefully achieving one thing...a fast and effective halt to the disease with full mucosal healing...the optimal outcome. It also hopes to avoid two things...1. The need for repeated courses of steroids, so the drugs in the immunosuppressant and biologic class are referred to as 'steroid sparing' and 2. The need for surgery will be greatly delayed or avoided altogether.

Dusty. xxx
 
Hey Victoria,

I am so sorry to hear about your daughter - but would concur you have found a GREAT resource for information and support... LOTS of wonderful folks here and how great it is to have somewhere to reach out to for support!

We do not have experience with the drugs that your doctor is recommending, though my son had ulcers through out his GI-track, his diagnoses was not "severe" hence he was started on a lower level med and it has (touch wood) been working for him.

Will be praying for you all...
 
We used remicade but after failing many drugs like dusty said.
So my kid suffered fro close to year while we would try each one and wait .
then start over again.
It was a long year.
Remicade was the only thing that brought him relief.
It may be considered a "big gun" but that is because it works and works well in most.
5 ASA's only work for 20% of the people.

Each drug has potential side effects and I do stress potential
because if you are the one who gets the side effects not a good thing but the
risk is small compared to the benefit which is why your doc for your child
prescribed them. WE take risks every day with our children without thinking about them.

CAr ride anyone
risk of dying if your under 14 --->1 in 250
Swimming risk of drowning --> 1 in 1000

Tcel lymphoma without any ibd drugs at all or bid
2 in 10,000
with remicade + 6-mp 4 in 10,000

so yes the risk does double but.....
compared to other deadly things is a very small risk.

I chose life for my kid
untreated or under treated crohns can be devastating even deadly so....
we take the meds and jump and cheer when they continue to work
and pray that we never have to stop the ones that work.

there is not right or wrong way to treat this disease
there is only the way that gets your child in remission .

I will say that I wish my son could continue to take remicade it was our miracle drug.
 
Thank you all for the advice and support. I went out and bought a couple books on Crohn's today and between all of you and the book I'm starting to understand the way this disease works. I also bought a juicer and my cousin and her girlfriend, who is also a chef, have an organic farm. I am heading over there tomorrow for some healthy organic produce, advice, juicing recipes.
 
Hey Victoria,

Wow, that is fab that you have access to such knowledge and produce! :)

My daughter is vegan/raw vegan and also juices. Head on over the Diet forum, there are loads of great threads about diet.

I have a couple of threads about Sarah's diet choices that have some good links in them.

Diet Forum

Sweet Poison

Raw Vegan

Good luck!

Dusty. xxx
 
Last edited:
Thank you Dusty! I spent the early afternoon at the farm. We juiced some amazing produce. I am extremely overwhelmed by what is right. My friend, the farmer/ chef is telling me NOT to go the drug route and try a homeopathic approach. Ugh... I'm so confused.

On a positive, which I always try to be my daughter's boyfriend started to read the book on Crohn's that I bought and today she asked to see it. Not sure if she's opened it yet, but its a step in the right direction.
 
Just wanted to say hi.

So sorry to hear about your daughter, it doesn't matter how old they are they will always be your baby.

Hopefully now you have a diagnosis and treatment plan, she will start to feel better very soon.

Sending hugs :ghug:
 
Hey Victoria...:ghug:

No offense to your friend but unless he has first hand experience with this disease and your daughters case then to say that is irresponsible. I know he means no harm but like any disease this one has varying degrees, if you are deemed very mild with no complications in sight then very mild treatments or even no immediate treatment may be considered by a GI but unfortunately your daughter doesn't fit that. That is not to say that you don't do everything you can to optimise your chances to beat the beast down but in your case I would recommend working in tandem with both your friend and the GI, do not have him pit you against mainstream medicine. You saw the pictures, short of a miracle homeopathic will not turn that around.

One thing I think you should consider as a compliment to your current treatment is Enteral Nutrition. In most countries outside the US it is a first line treatment in children/young adults and it is just as successful at inducing remission as steroids are. I note you are already on steroids but you can still down that path as a way of settling symptoms, assisting mucosal healing and providing complete nutrition and weight gain. Here a couple of links re EN:

Enteral Nutrition Forum

Kids on Enteral Nutrition

There are loads of parents on here that have experience with EN.

Again, I know your friend means no harm and I hope I don't come off as sounding like I am attacking him as that is not my intention.

Dusty. xxx
 
Second the en we did that in combo with steriods and maintenance meds.
It can only help.
DS still drinks 2-3 peptamen jr a day .
 
There is no way in this world I can convince my daughter to do en, that is a tube, correct?. I'm at a loss. Why can't I just switch intestines with her!? Wah. I know at the end of the day it is her body her choice I just want her to have all the facts, options, etc..
 
It doesn't have to be via a tube Victoria but if your daughter is dead against it by any method then move on. :ghug:

The thing you need to do right now, or help/guide your daughter to do, is to to get the inflammation under control now and stop any damage that may be occurring. That is your focus right here and right now, nothing else matters except that inflammation. She needs to get into remission ASAP, once it is all brought under control then you can turn your attention to the longer term management of the disease. That is when you look to what your options are re: maintenance medication, long term dietary changes, juicing, lifestyle, managing stress and so on.

Dusty. xxx
 
Just so happens one of my clients works at the hospital my daughter is being treated in GI. Enter some relief. I'm going back to work tomorrow and she just happened to have an appointment with me. Thank you Lord! Thank you all again. I will make it through this with all your love and support :)
 
You can drink ensure or boost which taste good.
They are whole proteins .
There are semi elemental formulas such as peptamen
Good luck
 
Sorry I missed alot of posts as I was away. I can totally understand your distress at the medications, but if it is severe, it is very important to get it treated asap. I held off on the medications after my son finished his 8 weeks of the EN liquid diet as his symptoms had gone. I argued that he was feeling really well and the GI was happy to agree for a little while. Then my son developed an abscess and fistula in his bottom which was a horrible experience in and out of hospital for a few months - I do wonder if I had let them start the meds in the beginning if we could have avoided all that. You need to get your daughter into remission before even thinking about trying to treat without meds.
I know you said she would hate a NG tube (my son had to use it as he hated the taste) but to be honest, after about 2 days he didn't even feel it any more. Also alot of kids manage to drink the EN so never need the tube.
Good luck with it all! I would be interested in hearing of any good juicing recipes you come across - I just bought one last week.
 
Again, as always I want to give thanks for this forum and all of you. You've all been so wonderful and supportive. My daughter and I are heading to Boston today to meet with her GI and discuss the plan. Are there any specific questions I should be asking? Thank you all again!

On a positive it is so nice seeing my daughter with color in her cheeks! Actually able to eat real food and had a solid bm yesterday. :dusty: She made a Crohn's recipe for dinner last night. We have dinner every Monday with my Dad, his girlfriend, and whoever else wants to join. It was delicious, but her stomach ached and felt full after. We believe it was the flour tortilla wrap. Guess we are sticking with the no gluten....
 
It is so fab to hear you daughter is looking better and feeling that way too I hope. :ghug:

Good luck with the appointment and safe travels! :goodluck:

Some questions you might like to consider:

- What is my diagnosis? (Get clarification)
- Where is the disease active?
- What form does the disease take (inflammation, ulcers, fistulas)?
- How severe would you say my disease was?
- What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?
- What treatment options are open to me?
- What does (treatment) do?
- What side effects should I be aware of?
- How long before I should see an improvement?
- How will you monitor if the treatment and/or failing?
- If this treatment fails, what will you recommend next?
- Do I need to take any nutritional supplements such as b12 or iron?

Dusty. xxx
 
Thank you Dusty! Do you ever sleep? It seems no matter the time of day you answer me. I am so grateful for you ♥
 
Good luck at the appointment. I was away for a few days so am just catching up...

As was said, you do want to get the inflammation under control asap. You will have a bit of time and guidance from your daughter's doctor when making a decision re maintenance treatments.

Just to clarify a bit about EN - EN can be used either exclusively (no food) for a period of time to induce remission and provide bowel rest or it can be used as a supplement, simply to help insure your daughter receives necessary nutrition. As a supplement, even when your daughter is on meds to induce remission or in clinical remission, any inflammation may cause malabsorption, the formula may help offset this.

The formula can be ingested either through NG tube or orally (shakes). Elemental or semi-elemental formulas are prepared in such a way as to be easily absorbed, however, it seems that the more easily absorbed, the more unpalatable. Hence, why some are ingested through NG tube. These are the formulas more commonly used to induce remission as they require less effort by the small intestine when absorbing. However, shakes such as Boost or Ensure, will still provide nutrition and have sometimes been used to induce remission as well.

However, as good a treatment option as EN is, if your daughter is just not open to it right now, I would leave it. Accepting the diagnosis is already so tough and exclusive EN (no food) is quite a challenging treatment if she's not motivated to do it. :ghug: If you or she are worried about nutrition, she can always just drink one or two shakes each day to boost her minerals/vitamin intake.

Hope the appointment goes well and you get some answers today. :ghug:
 
Hello all. Here are the notes my aunt took from today's appointment

Ashley’s condition (mild/moderate/severe) is severe – needs to be treated aggressively

Location is Small Intestines severly inflammed in the Duodenum. Was hard to navigate a 1cm scope in. Approx 1.5cm. Needs to be reduced asap.

Large Intestines her whole colon, minus the Sigmond and Rectum is patchy and inflammed.

Terminal Ileum looks normal

Regimen of Remicade treatments – every 2 weeks; every 4 weeks; (every 6 weeks the nurse said); every 8 weeks

Ashley will also be taking 6MP; Bactrim (antibiotic); prednisone (to be tapered down slowly 40mg to 30 to 20 to 10 to 7.5, etc.)

Best case scenario – 1-2 years of treatments

4-6 months – another colonoscopy and endoscopy to review treatment (after that every 10 years, or as needed)

Ashley should be on Multvitamin; Calcium (6 Tums/day) and Vit D (1000 units) daily

Side effects: fevers; chills; sweats; diarrhea (treat w/antibiotics); infections; anemia; liver levels; allergic reaction; & lymphoma (very rare) (us; 1 in 10K; w/Remincade treatment 3 in 10K)
 
Hi Neighbor,

Sorry we both have to be here. Thankfully, it sounds like Ashley has an AMAZING support system with you, your family and her boyfriend. It's been a few days since this post, and I hope she is doing better.

My dd is also starting Remicade in the very near future. Maybe we will meet in the infusion room (if you're at MGH) :)

Wishing you and your wonderful daughter a lot of luck. It's a difficult journey, but the love and support you are giving her will hopefully help both of you.
 
Sudsy said:
Hi Neighbor,

Sorry we both have to be here. Thankfully, it sounds like Ashley has an AMAZING support system with you, your family and her boyfriend. It's been a few days since this post, and I hope she is doing better.

My dd is also starting Remicade in the very near future. Maybe we will meet in the infusion room (if you're at MGH) :)

Wishing you and your wonderful daughter a lot of luck. It's a difficult journey, but the love and support you are giving her will hopefully help both of you.
Click to expand...



Thank you for kind words. We are at BMC, but maybe we cam connect at some point. I need a vacation, been a long month.....
 
Hi Victoria! Just caught this thread and wondering what treatments she may have commenced and how she's doing now?
 
Dexky said:
Hi Victoria! Just caught this thread and wondering what treatments she may have commenced and how she's doing now?
Click to expand...


Thank you for asking.

Ashley is now on 50mg 6mp, 20mg Prednisone, Remicade infusions, we just started that last Tuesday, Bactrim, Probiotic, Prilosec...She is suppose to be taking a multivitamin, calcium, and vitamin d, but she says the liquid is yucky.

Ashley doesn't look as well this week to me as she did last. I think she is eating more than she should be and she has been feeling nauseous again. It's tough being the parent, especially of a 20 year old who has her own free will. It's going to be trial and error.

Question for anyone.. If she is on Prednisone will the side effects of trigger foods be the same as if she wasn't on it?
 
My son only had diarrhea until he was on the prednisone then he started throwing up... but that was the only major change we saw. I'm not sure if it was food induced or not though.
 
Pred seems to affect everyone differently but if she has known trigger foods, it would probably be best to avoid them.

Pred, 6mp and Remi all at once I suppose should get her into remission quickly. Sounds like she has a very aggressive GI!!

Hope she's feeling better soon!!
 
Prednisone always boosts my son's appetite and he gains weight... which isn't necessarily a bad thing considering how much these kids can fluctuate. I wouldn't worry about eating too much.

I think prednisone may mask trigger foods. A person feels good so they eat what they want, but really, on the inside, they're still healing.

The nausea might be attributable to the 6MP. I know the sister drug, Azathioprine, is known to cause nausea so my son usually takes it before bed.
 

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