Newbie, 17 yo with ileostomy, starting treatment

[forehead_1]

Hi,

Don't really know what I'm doing but I'll start with the basics.. I am a 17 year old female who has suffered with severe abdominal pains for the past 10 years but I have never been diagnosed with anything until this year, when i was finally diagnosed with Crohn's Disease.

I had a major flare up this year which resulted in me having a laparoscopic appendectomy, being put on a course of steroids, then diagnosed with a fistula and a perforation to my small bowel - which resulted in septicemia, and almost the loss of my legs - then I finally had an ileostomy, which may be reversed in the future when they operate to take the affected part of my bowel out when the inflammation and fistula have healed.

They are starting me on Infliximab and Azathioprine in a few days, and i was just wondering if anyone has any information on what to expect when i begin these treatments? And any advice on how to deal with the 'emotional days' would be great.

Thanks in advance for reading, any help would be much appreciated!:rosette2:

x

 

[Crohnus]

hey, ive been diagnosed with crohns since 2010 and have been on remicade and Imurane since early 2011. its worked pretty good for me. i dont think i was as severe as you as mine was caught a little earlier. i did however go from 140 pounds to 112 pounds before it was decided i was sick.. after been able to start working out and playing sports and enjoying the outdoors again i am now 165 pounds and i thank the meds for that alot. the remicade is nice because it is a slow infusion so you have some time to really relax and recharge. i get mine with benadryl so it makes me very sleepy which is great. if you get benadryl you will likely need someone to drive you.

Having crohns can be a little upsetting at times but the worst is behind you. look forward to getting better. its nice having a forum like this to vent and ask questions. when i got sick i didnt know anyone that knew anything about it. it was tough to figure it out with nobody to talk to about it. ask lots of questions. somehting like 1 in every 100 people have it so know youre not alone. find a hobby that is calming. i like to nap when i get frustrated haha.

Find food that are easy on your guts. i ate a ton of mashed potatoes in my earlier years. potatoes chicken and green beans. chew really well. drink lots of water. eat smaller meals more frequently so you dont have to worry about having to try to digest big meals. sorry if you already know this stuff. not sure where youre at with diet and routines.

Hope some of this helps, good luck kid.
it all makes us stronger!

 

[SupportiveMom]

Hey forehead thanks for sharing your story. It may take a few weeks to get insurance settled before going onto Infliximab. In in Canada, took us about a week, but I have heard from some in the states it can take 2 to 3 weeks depending on your provider. I'd ask your doc if you can start Aza. it takes a bit longer to start working but you may want to ask if you can start it.

 

[forehead_1]

Thanks guys, I've lost weight since being diagnosed but only 14 pounds because I didn't have much to lose in the first place haha. I had to do a lot of research about my diet because the doctors have not helped me at all, I've been craving red meat so much (my jaws hurt) and I'm surviving on mashed potato!
And yes I'm glad I joined, it will be nice to get advice from people who have crohns themself, rather than just nurses and doctors.

And thanks supportivemom, but in the uk I don't have to wait for insurance or anything like that because I'm only 17 and still in education, but I think it is free on the nhs to certain people too.

Thanks for everything guys!

 

[UnXmas]

Hi, almost everything is free on the NHS at any age, except for the standard prescription charge of £8.20 for adults (with exceptions, e.g. unemployed, and some medical conditions, e.g. I have a permanent stoma so my prescriptions are free).

I can't offer much advice I just wanted to say that last year I had a bowel perforation and septicemia. It's scary but your life will get normal again.

Often a low fibre diet of soft foods is advised. If you're craving meat, you could start with white meat, e.g. chicken, or fish. They'll be easier on your digesstive system than red meat.

 

[forehead_1]

Yeh I was terrified, but I feel so much better now..and I've been advised to start with the white meat, but it's the iron I'm craving because I was already anaemic then obviously they took quite a few blood tests and were giving me blood thinning injections everyday, but the cravings seem to be slowly calming down. Thanks.

 

[scottsma]

Hello and welcome forehead,I'm from your neck of the woods,Really sorry you're going through this Pet,but you'll get lots of support from us,on here.Have you had a look at our "young adults" thread.It may help you to know there are others in your age group who are struggling or coping well with this nasty disease,and you can share your worries and thoughts with them.Don't be afraid to share.We've heard it all so nothing's taboo.Take care.

 

[forehead_1]

Hi scottsma, yeh I'll have a look at that, thanks!

 

[24601]

Welcome to the forum! So sorry to hear about everything you've been through!

I was diagnosed at 17 too (19 years ago!) but didn't have the baptism of fire that you have. I think it would be very understandable if you had emotional days as a delayed response to all that even without the continued stress of a chronic illness, which really isn't to be underestimated. It's not unusual to feel a bit all over the place emotionally when you're dealing with all these symptoms, new meds, potential side effects and the psychological stress of it all. Know that you are not alone in that. I think it really helps to come on the forum and read or vent.

I was on infliximab and the only side effect I had was feeling sleepy for a day or so after the infusion. That went away after the first few infusions though.

I've also taken azathioprine and as well as the blood work that your doctors will be doing I think it's important to make it clear to them how much any side effects you're experiencing are affecting you. There's a difference between nausea and aches that are mild and those that are utterly debilitating and suggest a serious reaction meaning that the med needs to be stopped - and I know that I, and others on the forum, have experienced doctors assuming it was the former unless you spell out exactly what you are experiencing. That said some people have no trouble with it, or just minor adjustments, and it can be very beneficial. I don't want anyone to think I'm saying azathioprine always causes side effects or that the risk/benefit ratio doesn't fall clearly in favour of using it for Crohn's! In a lot of patients it does help! I hope you're one of them!

I'm a bit concerned about your nutritional intake since you say you're eating mainly mashed potato. Not your fault, and completely understandable, but it's not very impressive that your doctors haven't given you any dietary help. I would think that with your weight loss and limited ability to eat right now that some supplement drinks like Fortisip might help. You can always ask your GP.

A GP should be able and willing to prescribe supplements and they are of course much cheaper when prescribed in the UK - even for those who have to pay. Btw, for when (or if) you move into the paying category, a pre-paid prescription certificate can easily be the most economical way to go when you have a chronic illness. Crohn's and Colitis UK have been campaigning for Crohn's patients to be exempt from paying prescription charges but have had no luck yet so £104 for all your prescriptions for one year can work out much cheaper! Just thought I'd include that for anyone who doesn't know about it!

I hope you start feeling much healthier soon and that infliximab and azathioprine do well by you! Keep us updated and let us know how it's all going! :ghug:

 

[forehead_1]

Thanks 24601, I have been asked if I would like to see a psychologist but I thought I would wait to see if I adjust first, so I'll see how it all pans out. Thanks for the info on infliximab and azathioprine, I'll keep an eye out for any side effects! I was on ensure protein drinks in the mornings because I couldn't bring myself to eat in the morning, but my stoma nurses have told me I've got to come off them and make myself eat in the morning..so now I'm not eating until lunchtime..but I'm eating a lot throughout the day still. However, I'm eating a lot of mashed potato because it is what I'm craving and I don't have to chew it haha, I can bring myself to eat other food but I just don't eat much of it.

Thankyou and I will!

 

[UnXmas]

If you're underweight or unintentionally losing weight, most doctors recommend Ensure or other supplements, but I know there are others who, like your stoma nurses, advocate for real food. I won't tell you to go against the advice you've been given, but if you're really struggling with eating, a second opinion from your GP or another doctor may be in favour of supplements. It's not just that they add calories, they also provide all the vitamins and other things you need, meaning that if all you want to eat is mash, you'll still be getting a balanced diet. But the best thing to do may be to start by asking your nurses the specific reason they want you off Ensure.

Have you been told which foods cause stoma blockages, that you need to avoid? Ileostomies mean a lot of diet changes, at least for the first six to eight weeks.

 

[forehead_1]

I'm at the hospital again on Thursday so I'll ask, thanks. And no, I had to do all the research myself because they haven't told me anything.

 

[24601]

I agree with UnXmas - I'd think complete nutrition drinks might well have their place for you right now since they'd help provide more balanced nutrition than you're currently managing.

I do understand that doctors and nurses want to see us eat real food but sometimes the time is simply not right to insist on that. I think they see at as a sign that we're "all better" but in reality healing is a process and there can be lots of situations where supplements are useful. In my opinion good nutrition should take precedence.

It's good, I think, that you were offered the opportunity to see a psychologist as it's nice to know there are doctors who recognise the impact of these big life events and that you have been through a lot. The forum is a great help too, I think, and it really can make a difference to talk to people who have been through similar experiences. There's lots of support and advice available from people who've gone through the adjustment of having a stoma too. I'm speaking for them but I'm sure that if you have any questions at all they'd be happy to help

 

[forehead_1]

Yeh the doctors and nurses haven't really said much about anything to me, only that I need to push myself to change my bag because I can only empty it myself but my mum has to change it for me because I can't even look at my stoma, it's like a mental block. But I'm slowly getting used to it, they said my slight 'mental breakdown' was because of how fast everything happened, but I've got a great family keeping close eye on me incase my emotional days get worse again haha. Thanks 24601.

 

[24601]

Hi, I just wanted to say that you might find it helpful to join the stoma support group because I think it would be good to have people to talk to who've been through the same thing! Let us know how your appointment goes tomorrow!

 

[forehead_1]

I'll have a look, thanks. And I will!

 

[Grotbags]

Hi, and welcome to the forum .
I've had Crohn's for 26 years, been on every medication out there, and just last Christmas was given a permanent ileostomy.
It's ridiculous that your medical team haven't been more supportive, it's what they're there for after all.
Food wise, I would suggest bananas, which are great for thickening up your output, and very easy on the stomach and bowels, smooth peanut butter, but it must be smooth, is great for protein and also helps to thicken things up, chicken and white pasta are great, white rice, cheese ( as long as your ok with dairy) smooth yogurts , soup, toast of course, ice cream ( yahoo ! ) .
Just stay away from high fibre foods, such as wholemeal and brown bread, beans, peas, mushrooms, grains in general really.
I just started on making my own smoothies, which you might not be quite ready for yet, but it's amazing what you can make into a smoothie, and be healthy too.
Are you happy with your pouches etc ?.
If your not, get some free samples from all the companies, they are usually quite generous, as they want you to request their products, you can also get pouch covers, I have a black and white skull and crossbones one, and a floral one for when I'm feeling girly.
It's quite amazing the products you can get to help you live a normal life, you can get some rather natty knickers for instance, that keep everything nice and secure, I just got some shocking pink ones.
It won't always be like this, you will improve, I love my stoma, for the first time in years, I'm pain and nausea free, I find it quite fascinating to watch when I'm changing my pouch, which I rather enjoy doing.
Plus your stoma will shrink a bit, mine looked like a big peeled tomato at first, but now it's down to a rather neat wee thing, 5 months post op.
If your struggling with clothing to accommodate your stoma and pouch, Mothercare do some really nice maternity jeans and leggings, that nobody would ever guess are maternity.
If you've read to the end of this post, well done ! lol, I do get quite enthusiastic about Stoma's and ramble on a bit.
Do try and remember having a stoma is no barrier to living a normal life if you let yourself

 

[forehead_1]

Thanks grotbags, they gave me loperamide to thicken it but it wasn't for me..so I'll try a banana instead haha. I'm ok clothes wise, I only wear leggings anyway and I've invested in a lot of baggy tshirt's and jumpers. It was my 18th birthday yesterday and I think my birthday cake was too rich for my stomach as I brought it back up and felt really ill for the rest of the night (so that was fun).
As you all know I started my medication today, but they only gave me the azathioprine today as they want me to be eased into it. I start my infliximab infusion on Tuesday, but the azathioprine has made me so tired! Does anyone know how long it lasts? And is it better to take while eating or after? Thanks.

 

[niki27]

Have you thought of trying alternatives such as a diet? I'm 20 and if you ever just need support I'm always here I know it's difficult and it looks like you are going though soooo much at such a young age! I know a diet saved my life and I hope I can help you in anyway possible.
Best of luck!, Niki

 

[Grotbags]

Azathioprin never agreed with me, no matter what I did, always made my symptoms worse.

 

[forehead_1]

What type of diet do you mean? And thankyou.

 

[niki27]

I created a diet specialized for me. I started out with a nutritionist but am still doing it by myself. I went though many diets but none of them really made me 100% so I started out as a baby and introduced new foods slowly testing my body and what fits for me. I know a couple of people that I went along with who have done the same and all who stuck to their diet have 100% success! If you are interested please send me a message and I will me more then happy to guide you though everything and give you more details about everything! just don't want to write here a huge paragraph hahah
Really hope to hear from you soon!!! I would love to help you out and I really want to let people know that there is an option to be healthy I know that for a fact because I've been there and I know I did it and I got the results!
Hope to hear from you soon! Niki <3