Support needed!!

[ponygirl]

support needed!!

hi all
i'm new on here, I was recently diagnosed with what the docs seem to think is IBS, although i've been in hospital 3 times in the past 2 months and am awaiting more tests.

Anyway Im actually looking for some support, my long-term boyfriend is 21 and has crohns pretty bad.

he was diagnosed 10 years ago and is very much steroid dependent which has lead to him developing osteoporosis in his spine. he is also super anaemic and is due to start iron infusions (i am worried about reactions etc as he has had such awful luck recently)

in aug 2010 he has a resection of his small intestine, but a week later the stitches leaked, rushed into hospital and we nearly lost him. he ended up having to have emergency surgery and a temporary ileostomy.

In january this year he ended up in hospital whith what he thought was a blockage, but after 3 weeks going in and out and 5 blue light ambulances, it was discovered that he had infection in his stoma, and had to have a new stoma made (we're not sure whether the stop smoking drug champex caused this).

He has recovered well and is currently on azathaparine (cant spell sorry) and humira injections. I coul;d use some support as i suffer from depression anyway and I worry constantly about him. I dont tell him this as most of the time he is well, but he doesnt like to talk about what has happened and i dont think i have got over the shock of thinking we were going to lose him, it was awful.

i am always worried if i dont hear from him that he is in hopsital or ill- as over this past year this has, on several occasions, been the case. AM really sick of "dont panic, but.....he's gonna be ok try not to worry, he's in the best place" texts.

He has had a couple of episodes of "sticky bowels" where has has had severe pain and sudden vommiting, and ended up in hospital on morphine, but after several hours the pain subsides and he is ok. I was with him the last time this happened and it terrifed me. Apparently this could keep happening due to adhesions from all the surgery he has had.

Has anyone else experienced this?? or does anyone know about iron infusions?? will he be ok? Any support or advice greatly appreciated, I can't really talk to him about it Xx

 

[Crohn's 35]

Hi there :welcome: to the forum. It is good that you are seeking help for you both. Everyone is different in this disease and locations. I dont know much about Iron infusions, but because he has had resections he should be tested for B12 and Vitamin D levels. Adhesions are usually scar tissue built up from surgery as well as flaring. He is one that is having a hard time at such a young age. You are good to support him and be there but you being worried will make you ill too.

Through time you will see his pattern, some of us do and some dont. The best diet is a low residue diet and if he is really bad, just fluids or modulen. He is a guy, guys dont like to talk about their bowels, especially a 21 year old. Champex has sides to many without diseases. But quitting smoking and drinking will help him down the road.

Many young people here to share their experiences. :hang:

 

[ponygirl]

thankyou. yeah he plans to give up smoking but finds i hard i think as that is his way of dealing with the distress if the diesase- although of course it won't help him physically. he rarely drinks, his body can't seem to handle it. DIfficult. thnkyou X

 

[ponygirl]

also he used to have b12 injections. he doesnt any more- im not entirely sure why. im not sure if he can absorb them? if that makes sense. he had his infusion today and says he is feeling ok. wont know til next weeks tests as to whether iron has been absorbed and his levels have gone up. fingers crossed when they do he'll feel better and more energised in general

 

[David]

If he was on B12 infusions before, he likely should never have stopped them. Injections are bioavailable, it is the dietary and oral forms of B12 that cannot be absorbed by many people with Crohn's Disease. Get his B12 tested and get him back on B12 if he's anywhere below 500. Also get his vitamin D tested (he's going to be deficient) and on high doses of it. Read this thread for more info on Vitamin D. In addition, since he is steroid dependent and already experiencing bone density issues, he needs to be supplementing calcium, phosphorus, zinc, potassium, vitamin C and consume higher amounts of protein according to these fine folks.

Get him on the right dietary/supplementation path and you'll be supporting him in ways neither of you could have imagined.

All my best to both of you.

 

[crazycanuck]

I was just studying for an exam before coming on here and well one of my exam questions I believe is going to be on osteoporosis. Along with the vitamin D/Calcium supplements (which work together), exercise is one of the best ways to maintain bone density and slow the effects of osteoporosis. Because muscles/tendons attach to bones they pull on the bone when they are used. The more pulling on them, the more your body reacts to it and will build up the bone density in that area and bone growth may occur which can help to reverse osteoporosis in some cases.... Will you look at that I remembered something :lol:

It's fantastic he's got somebody like you looking out for him. Even if he doesn't say it I'd almost guarantee it makes a big difference because I'm not sure what I'd do without my girlfriend there for me. I hope you guys are both back feeling well soon and best of luck.

Oh! and Welcome to the forums.

 

[ponygirl]

thankyou for your replies, he had the infusion and has had no ill-effects other than a bit of tiredness i will ask about the b12

 

[KWalker]

Welcome! Your boyfriend is really lucky to have someone like you that cares about him. I'm a 21 year old male who also has crohns and my fiancee is the best support ever with helping me. It sucks trying to grow up and be normal with crohns and I've been at some low point myself so I can tell you it does get better for him.

I used to do iron infusions while doing Remicade and it sucked, but it must of worked as I don't need them anymore. I don't remember any bad side effects because of them.

Hope to see you guys around the forums!

 

[ponygirl]

thankyou it id great to see that from someone of the same age who actually knows how he feels. yes apparently if the infusions push his iron levels up he'll only need them every 4 months ish. did the infusions make you feel better in general? that you noticed?

 

[KWalker]

Honestly for me, I was doing them every single time I had Remicade infusions so I really couldn't tell you what difference the iron speicifically made. I remember I was always tired before and after the infusions I seemed to have more energy all around.