Worried about the future - any advice please?

[Traceyjo88]

Hi Everyone

This is my first post, but I have found this site an absolute Godsend since my daughter, Devon, was diagnosed last year. She is 14 years old and has been in and out of hospital for many years with abdominal pains and swelling. they finally diagnosed Crohn's and Rhematoid arthritis last September and since then Devon has tried a number of treatments unsuccessfully - she has tried the liquid diet, prednisolone and methotrexate. Finding medication is difficult due to her arthritis, for now she is on azathioprine (since yesterday) which is treating her Crohn's but not her arthritis apparently. She is having surgery in a few weeks to remove part of her bowel and then the consultant has advised they will move her on to 'infliximab'.

All the way through the medication problems and the effects of her illnesses Devon has been an absolute star - she just takes it all in her stride, but i do have worries about her future. With infliximab we are told she will have to go into hospital one day a month to receive the infusion - surely this will affect her school/college/future job prospects? The doctor says it shouldn't because of disability discrimination laws but in practice ....? It is really hard to know what to do for the best but it seems we are running out of medication options.

Also, though Devon is only 14, she has for years said that she would really like to join the police force but i have noticed some posts from people saying that they have not been able to follow their chosen career path because of the Crohn's. Does anyone know if this is still the case or are employers more tolerant now?

Are there any parents out there that have had similar experiences please?

Any advice would be very much appreciated. At the moment I am trying hard just to focus on the 'here and now' but every so often...

 

[NMMom]

My 5 year old was diagnosed less than a month ago. One thing I've heard from people who have walked this path is that our children will lead awesome, happy, normal lives. However, "normal" might be different that what we had imagined. I never expected to have to have a young daughter whose medication dosing schedule is more complex than my 94 year old grandmother but we're dealing, learning and coping. Your daughter might end up using this experience to help others in her future line of work and help other kids find their new normal.

I'm no Pollyanna but I really really believe that our kids are so much stronger than we usually are. I'm sorry that you all have had a rough year but I know that she'll start feeling better soon. These medications require so much "tweaking" for each individual person and it takes much longer than we'd like to find the right combo.

You've found a good place and you're doing a great job mom! Hang in there

 

[Traceyjo88]

Thanks for that NMMom and of course you are right. My daughter has had (non-Crohns related) medical problems since birth and has been through a number of operations and physical challenges in her 14 years. She is always positive and strong and, I must confess, puts me to shame sometimes. I am sure she will be fine once we find the right medication for her and, as you point out, her experiences are equipping her with a determination and resilience that will hopefully see her through fine. Hopefully she will overcome any barriers that presented with the same approach she has had to her health problems.

 

[Sascot]

Sorry to hear about your daughter's diagnosis and the meds aren't working so far. I also worry about my son's future - he has missed alot of school over the last year. However, he seems to still do really well at school and his friends have stuck by him. I am trying to not worry (nearly impossible) as there is nothing we can do to change the diagnosis, we can only make the best of it. Good luck with her surgery and I hope the meds start working for her.

 

[Jmrogers4]

My son was on Aza for many years, I do know that it can take a while for it to reach "theraputic" levels.
As far as doing what she wants to in life. I think they make adjustments in how to acheive what they want to but I don't think it always has to stop you for doing what you would like. There are many "sport" stars out there doing what they love in spite of dealing with crohns. I'm sure there are just as many everyday joes doing the job that they love as well. My husband was diagnosed with Crohns 20 years ago and I don't think there has been a problem with any boss/job he has had it that time, he has been with the last company for 12 years and they have always been very supportive.
We have traveled and played and done pretty much whatever we have wanted to do despite the Crohns, of course we are always prepared and know where the bathroom is wherever we go, always keep immodium on hand for emergencies and soft toilet paper. :smile:

 

[Patricia56]

Welcome Traceyjo88.

I am sorry it took so long for your daughter to get diagnosed and to start getting real help with her illnesses. You and she must be angry at how long it has taken despite being thankful.

I can't promise she will be able to be a "cop" as we say here - someone who patrols the streets and arrest criminals. But that doesn't mean that other less physically demanding jobs in the police force are out of reach for her. So I would not worry about that quite yet. You are right - it's important to stay in the here and now. "Don't borrow trouble" my mom would say.

I know the medical system is different here than there but I'm a bit surprised they aren't trying the infliximab (AKA remicade) first, before the surgery. Especially since she also has RA. Infliximab is an approved treatment for RA too.

Perhaps this is something to talk over with her doctors. Or ask for a 2nd opinion consult prior to surgery. I think it is always good to get a 2nd opinion when surgery is being considered unless it is an emergency.

Hope she is feeling better very soon.

 

[Traceyjo88]

Thanks for the posts. This site is great - it is good to hear your positive stories so thank you everyone!

Hi Patricia56 - you are right, the infliximab was supposed to be the next step but my daughter is getting quite a lot of pain at the moment and a recent MRI scan has shown 'stricturing' which I believe is scar tissue which is blocking the bowel. The doctor wanted to operate quickly but my daughter was keen to get started at school first (today was her first day) so they agreed to delay it a couple of weeks. Apparently the infliximab will raise the chances of her getting an infection so they want to delay her starting it for now until after her op. The doc advises that the medication cannot repair her bowel and it will just continue to get worse unless she has the op. Do you have a different experience? If we could avoid any surgery then that would be fantastic but advice so far (from two consultants) has been that the Crohns has damaged her bowel beyond repair and her only option is surgery.

On the positive side, they are hoping to get her into remission once the op is over as all of her other patches of Crohn's have been responding to the methotrexate - and apparently, even on infliximab she will have to continue a small dose of methotrexate. This is all new to me so hope I am making sense?

 

[Patricia56]

That helps explain the situation.

If her gut is otherwise responding to the MTX then it makes sense that they would think the stricture is scar tissue.

When doctors talk about strictures it's confusing because you can get stricturing that is due to active inflammation and stricturing that is scar tissue and will not improve with medical treatment. If the scarring is severe enough then surgery is ncessary.

Since the stricture is not responding to MTX but the rest of the gut inflammation is responding the natural conclusion is that the stricture is scar tissue and needs to be removed before she develops a full obstruction and would require emergency surgery. It's always best to avoid emergency surgery if possible.

It sounds like you have finally gotten to doctors who know what they're doing and are making sound recommendations for her care.

It's good that she will continue on the MTX along with the infliximab. The research has clearly shown that doing both kinds of meds together improves the chances of short and long term success.

I hope her surgery goes smoothly and her recovery is uneventful.

Both the methotrexate and infliximab should help her RA too.

 

[jmckinley]

:hug:

So sorry to hear about the rough time you are having. I think we all worry about the future, I know we do. But like you, I try to set that aside and enjoy the moment. My husband has a friend with IBD who is very successful and loves his career. I know there is something out there that your daughter will love to do. She will have to use her creativity to combine her desires and talents! But she can do it. Our kids are resilient beyond belief.

My son is 15. He is on Remicade and Methotrexate now and we are (dare I say it) possibly reaching remission. The infusions are pretty easy. We have to miss a day of school, but it takes about 3 hours in an outpatient office. He feels fine afterwards. I have a friend who takes remicade for RA, so hopefully it will be the wonderdrug for your daughter.

 

[Farmwife]

Hi and welcome,
Sorry to hear about the rough go.
I hope she can get better and fast.

Farmwife

 

[Gwen pippy]

Just wanted to give a child view if I may, althought I am 37 now!!!
I was dx age 11, my poor parents worlds were turned upside down, they worried for my health and for the life they thought that I had lost but then they watched me grow, they watched my passion to fight, my ability to catch up in education even though some days I couldn't get out of the bathroom long enough to watch a tv show.
Please please please know this, your children are amazing and they are strong beyond your imagination and once they have your support they will go far. I have passed exams even though the teachers told me not to bother attending, I have had good jobs, got promotions, I got fired, I loved, I lost, I now have the HUBBY & two beautiful children. I have lived my life the way I knew best, I take a step back when I need too but most importantly I enjoy life.
Thanks to my parents, my rocks!!!
Gwen xxx

 

[KWalker]

Like Gwen pippy I can also relate through a child's view, however in my case I was diagnosed at 2 years old. The second youngest child in Ontario to be diagnosed at the time actually. As rough as it has been sometimes, I'm actually thankful that I got diagnosed at the young age I did. To me, crohns is a part of my everyday, normal life. I don't know what it's like to have a "normal" bowel movement, I'll probably never have the body weight I'd like to have (wishing to gain), etc. But you know, I think it would be a lot worse for me if I went from having no problems, to the restrictions that crohns can involve. I've just made these new changes part of my everyday life and I've gotten so used to them that to me, it's normal.

Also with being a child with crohn's you can attack it at a young age to try and prevent problems in your 20's,30's, 40's, etc. I've been on almost every medicine I can be on with exception to a small few and I personally believe that through all of that they've helped me get to where I am today with my crohns. I am now 22 and live a normal, med-free lifestyle with my fiancee and I'm currently studying in University doing a double major in Honors Psychology and Child and Youth Studies to earn my Master's degree and then move on to get my Ph.D so I can become a Psychologist. There are many inspiring stories on this forum about how members have taken action and not let crohns get in the way of their lives and your daughter can too. The only thing stopping yourself in life is you.

As a person growing up with crohns I can respect you and all the others parents of the crohnsforum who take the time to educate themselves to help your children as my mom didn't know much about the disease so she just let the doctor call all the shots...which isn't always a bad thing.

I know of both a doctor and a firefighter who have crohns to show reference as to not letting crohns ruin your life. With the support of parents like yourselves I'm confident each and one of your children will live successful lives as well.

 

[crohnsinct]

Hi and welcome to the group. The switch to Remicade makes total sense to me as it is frequently perscribed for both RA and Cohns. My daughter is on Remicade and once you get past the introduction period (6 or 7 infusions) they can speed up the drip and it will only take 2 hours instead of three so now she doesn't miss a whole day just for infusion. When Remicade works it is great and I really don't think her Crohns will get in the way of her desire to join the police or do anything else she desires. My daughter is a triathlete and practices her sports for at least 3 hours a day now. However, I can't comment on the RA aspect. Another thing to keep in mind is she is 14 and can change her mind a hundred times before she graduates. These kids are so strong they amaze me. I think your daughter posted on another thread here and I was very impressed with her attitude. My daughter tells everyone she is not to be defined by Crohns but rather she wants to define it.

I am so sorry to hear about the surgery and really hope it goes well and that she can get on her way to remission as quickly as possible! Best of luck! Keep us posted.

 

[Traceyjo88]

Thank you so much for all your kind words and inspirational stories - they made me cry, but in a good way. I feel ready to fight another day again now and feel much more positive about Devon's future. I am so very pleased I found this site! X

 

[DustyKat]

Hi Traceyjo and :welcome:

I am so sorry to hear about your girl...:hug:

I haven't read every post on this thread so I apologise if I am repeating what has already been said. With stricturing that progressed to scar tissue and narrowing that is symptomatic then surgery is your only option, no medication can deal with that. Sometimes what is called a strictureplasty can be performed, it is surgery that 'releases' the scar tissue without any bowel being removed but you must fit the criteria for it to be considered otherwise a resection is done. Occasionally both procedures are performed.

Neither of my children have any other health issues aside from their Crohn's, they both have terminal ileal disease only and they both responded very well to surgery, they are in remission. Their lives have certainly been changed by this disease and even in remission there are lasting reminders...doctors visits, medication, dietary changes...but they are both leading very full and productive lives. It has changed them psychologically but I do believe it has done this for the better. At this point in time it has not affected my son's choices of career, I think he will go down the academic path, my daughter however did want to join the armed forces but she was unable to. She refocused and is now concentrating on politics but has tossed joining the Police force into the ring. She has looked into it and provided she can pass all the requirements, including physical, of the 3 month training course, as everyone is required to do, then she will graduate as a Police Officer.

Good luck with the meds and the surgery and keep us posted on how you are getting on.

Dusty. xxx