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Will it ever get better?

For the last year me and the boyfriend have been completely screwed over by the NHS. He had an abscess last January, which was diagnosed as a stricture (after he'd been down for the op. He was admitted for having an abscess.)

After the ordeal of that it was smooth sailing. But (there will always be a but) he had crippling bowel pain between January and June, when he was readmitted for said pain. He was basically sat in hospital with no treatment until July 12th when he had a bowel resection, an abscess the size of a golf ball removed, and a perforated bowel repaired. We only found out about the perforation after he'd been discharged (August.) On July 21st he was rushed to theatre again for an emergency op because his bowel had came apart and everything was leaking into his body. The surgery wound was seeping with what can only be described as blood, pus, and fecal matter. Nice. But no, they still wanted to discharge him. It was only when he removed a dressing to get in the shower and this goop just fell onto the ground that the doctors did anything. He was fitted with an ileostomy and mucous fistula and then put into an induced coma to recover from the severe septicemia that he acquired. Thanks NHS.

Now, he may have another abscess, which by the time he recovers from the op it will be time to have his stoma reversed (a matter of which I am terrified about, nightly panic attacks will ensue.)

We're left thinking that he's never going to get any better, and this is what our life together will be like. We're both 18 but we feel like we're in our 50's, as we can't do things our friends or other couples our age do. The furthest from home we've been together is Redcar, about 10 minutes away from us by train. We have a very eventful relationship! Just not great events.

Does anyone else ever feel like this? We feel incredibly lonely.
 

SarahBear

Moderator
Location
Charleston,
Hi, Hayley!

I'm so, so sorry. It's terrible you two have had to deal with so much. :(

I think most of us do feel like that. It seems like everything is 10x more of a struggle than it should be, and it's so disheartening when you can't see a light at the end of the tunnel.

It's wonderful that you're so caring and supportive of him. You're fantastic! I know we all worry and feel guilty about putting our significant others' through this with us, but knowing there are people who care in spite of the problems makes a big difference for all of us. He's very lucky to have you!

Is he currently taking any medications, or are there plans to start him on something new?
 
He's currently on his steroids (as usual) slow release morphine, oramorph and gabapentin as painkillers and I'm not sure of his others but I think he's still on 18 a day (9 in the morning, 9 in the evening, and oramorph every 6 hours if he needs it)


Edit: Back to hospital we go! The abscess he had on his butt had popped and so we thought he'd be going to hospital to get it lanced and be home before we knew it. Nope. Since 6pm GMT it's turned into 2 new abscesses! Fantastic!
 
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Speaking as a almost 50 year old Crohny, yes it will get better. They will find the right meds and get his Crohns under control and he will be able to have a better life.It probably will be a bumpy ride getting to that place, but it will happen. It really makes a difference when you have support.He is really lucky to have you.
 
Location
Glasgow
yeah dougie is right. it will definetly settle down as soon as he finds the right meds that suit him. it takes a good while to find the right medication that works.

he is also really lucky to have someone like you who is obviousley so supportive and caring.

its not a simple road but things do get easier to manage :)
 
Thank you everyone :) He got discharged from hospital yesterday (our quickest hospital stay yet!) and the abscess didn't need to be drained fully, just tidied up a little. He's in next Tuesday to get it packed again, which he hates so I'm not looking forward to going there with him. Thank you for all the support, I think it's just that there's a lot going on now (applying to uni, lots of coursework, etc) for me as well as his illness, and it's affecting us both badly. But it's getting better, college is finally getting my references done for my uni application (the deadline is midnight. Stupid college.) and I'm getting on top of my coursework and everything so it's looking better already.
 
Location
Keller,
I'm sorry to hear this, I hope things get better! It sounds like you have a lot going on right now, deep breaths and vent to us as much as you need, we will be here for you!!!
 
I'm sorry that sounds really hard to deal with. I know where you are coming from though. I'm 18 as well and have crohns disease. It is so hard to deal with every day. I've become somewhat isolated because of being sick. It really sucks I want to go out and have a good time, but with my stomach issues its just impossible sometimes. Your boyfriend is lucky to have you though. I don't know what I would do without my boyfriend in this situation. It sucks sometimes when you feel like it will never change. You just have to keep your head up and focus on the good things. Something I'm still trying to get into my head is that it takes time to get better, so you really do have to be patient. Having someone to go through everything with you really does make it better though.
 
I'm so sorry. Sounds like you haven't been able to make the trip to Liverpool either.

Hope things get better for you soon.
 
Hi Haley!
Just want to send you a hug and support. It's so difficult at such a young age dealing with diseases you never could've imagined as a young person. I commend you for sticking by his side and being such a wonderful support:thumright: to him. Your love and caring is the best medicine he could ever get. Bless you hun!:heart::heart::heart:
 
Oops, been inactive for a while, sorry guys! Well, the abscess was drained, and he was out the next day (classic Hayley overreacting from me) so that was fantastic news, and he came back to college this Monday. He had a meeting with one of his consultants and we've found that due to his long term steroid use his adrenal gland has shut down, so there'll be no coming off steroids soon, if at all. This means that the reversal op could happen any time soon, which sends me into crippling panic so that's enough of that, haha. Today he had splints fitted on his fingers because of his hypermobility, which apparently can be linked to his crohns meds? Have any of you had this or is it just us, because this is something I've never heard of.

Thank you all for your support, it means so much to me, I'll try to keep everyone posted more regularly but as I'm doing mainly coursework based subjects in college and having a Joe I'm often quite busy. But I do check this daily, and it really helps to see that you're all there for us. Thank you all so much.
 

SarahBear

Moderator
Location
Charleston,
I'm glad he's out of the hospital and back to school!

I haven't head of the hyper-mobility issue - but I encourage you to post about it in General and see if anyone else has any input. Can you explain to us what that is?

:hug: I'm very glad things are going well and I hope they continue to!
 
Oops, been inactive for a while, sorry guys! Well, the abscess was drained, and he was out the next day (classic Hayley overreacting from me) so that was fantastic news, and he came back to college this Monday. He had a meeting with one of his consultants and we've found that due to his long term steroid use his adrenal gland has shut down, so there'll be no coming off steroids soon, if at all. This means that the reversal op could happen any time soon, which sends me into crippling panic so that's enough of that, haha. Today he had splints fitted on his fingers because of his hypermobility, which apparently can be linked to his crohns meds? Have any of you had this or is it just us, because this is something I've never heard of.

Thank you all for your support, it means so much to me, I'll try to keep everyone posted more regularly but as I'm doing mainly coursework based subjects in college and having a Joe I'm often quite busy. But I do check this daily, and it really helps to see that you're all there for us. Thank you all so much.
Haley, here is a link to a really good website you can try for hypermobility. Hope this helps you guys out!
http://www.hypermobility.org/index.php Keep us posted hon!!!:heart:
 
Of course. Hypermobility basically means that the joints in his fingers are too mobile. For example, if you hold you hand out in front of you, your fingers should be straight, or at most tilted slightly upwards but on a barely noticeable angle. Joe's fingers go up a noticeable amount which starts at his 2nd knuckle, he can also bend them back right to the top of his hand (quite alarming to see I assure you.) It's because the tendons in our hands will be equally stretchy or equal lengths, but one of Joe's is more stretchy/longer than the other.
 
Of course. Hypermobility basically means that the joints in his fingers are too mobile. For example, if you hold you hand out in front of you, your fingers should be straight, or at most tilted slightly upwards but on a barely noticeable angle. Joe's fingers go up a noticeable amount which starts at his 2nd knuckle, he can also bend them back right to the top of his hand (quite alarming to see I assure you.) It's because the tendons in our hands will be equally stretchy or equal lengths, but one of Joe's is more stretchy/longer than the other.
Did you try the link I sent Haley?
 
Did you try the link I sent Haley?
I've just had a look and it looks really useful, especially the area aimed at younger people! I'll have to show Joe it on Friday, it's not often we find any websites (other than this one, but Joe's never found any) that have that. Thank you so much!
 
I've just had a look and it looks really useful, especially the area aimed at younger people! I'll have to show Joe it on Friday, it's not often we find any websites (other than this one, but Joe's never found any) that have that. Thank you so much!
You're welcome sweetie. Give Joe a hug for me and you take care of you too!!!:thumright::heart:
 
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