My boyfriend has chrohns

[Hayleymariex]

Hi, I'm new to the forum and thought this would be as good an introduction thread as any so here goes.
My boyfriend has been dealing with crohns since he was 13, he's now 17. We've been together for 2 months but I knew of his illness since I met him, but never knew very much about it except it caused him great pain. Last week he was hospitalized, only for a day, due to the pain getting so bad, and they changed his meds for him. But he still complains of pain in the area that his bowel is. He think's he needs to go for surgery but doesn't want to, as he thinks he'll have to have a permanent bag. He's made it clear from his diagnosis that if he does get a bag he'll kill himself, as that isn't the kind of life he wants. I'm 16 and struggling with depression, and I've made it clear that I'll be here for him, and care for him no matter what happens. But I don't really understand everything that's going on, or know how to help. Someone please help

 

[Concern411]

Hang in there

Hi, I'm new to the forum and thought this would be as good an introduction thread as any so here goes.
My boyfriend has been dealing with crohns since he was 13, he's now 17. We've been together for 2 months but I knew of his illness since I met him, but never knew very much about it except it caused him great pain. Last week he was hospitalized, only for a day, due to the pain getting so bad, and they changed his meds for him. But he still complains of pain in the area that his bowel is. He think's he needs to go for surgery but doesn't want to, as he thinks he'll have to have a permanent bag. He's made it clear from his diagnosis that if he does get a bag he'll kill himself, as that isn't the kind of life he wants. I'm 16 and struggling with depression, and I've made it clear that I'll be here for him, and care for him no matter what happens. But I don't really understand everything that's going on, or know how to help. Someone please help

I feel your pain , I am a mother of a son with crohn's, what meds is he on ? My son is taken remicade infusion . you got to find the right meds and at sounds like there is no pill out there that will work. at lease thats how it is for my son. Anyway he will say alot of things crazy but that is part of the sickness. Just keep loving him and letting and showing him you are there for him. as far as your problem dont be depressed everything will be alright. Crohn's is a disease that makes you work for the answer but there is an answer so do what you are doing and make that difference and enjoy every good day with him. he may need infusions.

 

[Crohn's 35]

:bigwave: Hi Haley welcome to the forum. First of all I am glad you came here to seek advice for your bf. Knowledge of the disease is a way to help those who have misconceptions of their options. You are both very young and he needs to be on here as well. It really depends where his disease actually is. Most times a bag is not needed. Having said that, there are many here his age who do have it and say it was the best thing they ever did. Depression is common with this disease and vanity goes along with human nature.

Life is what YOU make it , no one can make someone do anything they don't want to do but ignorance is not an option. Show him our site, it is very embarrassing to talk about this disease especially for guys. Stressing out causes more flares too. Glad you are here to get some help but in the end your bf needs to be aware of ALL options.

Keep us posted, even if he is too stubborn to come on here himself, men get that way :lol: You are a gem. Good luck.

 

[Hayleymariex]

Thank you guys. The only meds I can remember the names of are codeine and tramadol. He's on steroids too, and he mentioned something that stops his immune system, so all the white blood cells focus on crohns, or words to that effect. He's the one who mentioned this forum to me, but he said he'd never use it himself. I do intend to stick by him whatever happens and hopefully help him make the best possible decisions

 

[Jessi]

Hayley, welcome to the family. You are a love. Your guy is so blessed to have you in his life. :hug:

First off, if you are suffering from depression, there are options for you. It is a real and serious issue. Please don't forget to take care of yourself. It's never a bad idea to consult with a doctor.

It sounds like your bf was mentioning an immunosuppressant drug. They won't stop his immune system completely. It's not like chemotherapy for cancer. It suppresses just a portion of the immune system, so that the bowel will not be under attack. These drugs work really well for a lot of people. I'm on one, and I feel FABULOUS!! There is hope for him.

And a bag wouldn't be terrible. It takes some getting used to in the beginning, but people live very regular lives with bags. We have a forum here for people that use them, and it is a pretty happy forum.

Give your guy some lovin' for us. :hug: Come around often and read as much as you can. Knowledge is so important with a disease like this.

 

[amssgirl]

Hi Hayley,
Thought I'd pop in and say hi and welcome to the forum!
My bf also has Crohn's, and I think it's wonderful you're sticking by him and coming to the boards to learn more about the disease support him in whatever way you can. I can honestly say I felt alone at times, but now it is a comfort to know there are people out there who don't have Crohn's themselves, but have a loved one that does.

I don't know about the specifics of your bf's case, but as far as I know not all types of surgeries result in him needing a bag. Is he sure that will be the outcome for him, or is he only thinking that surgery = bag? I can say my bf went through a surgery and he doesn't have a bag as a result, but I will say again I don't know the specifics of your bf's case.

I know it may not feel like it at times, but sometimes just being there and lending an ear to your bf will do wonders. I think taking this first step and reaching out there (or here on the boards) for more information is already a huge huge positive step for you both.

And I also agree with Jessi: don't forget to take care of yourself too! All the best!

 

[JanaSasse]

Hello Hayley, I too have Crohn's,,, I waited too long before agreeing on having the surgery,,, Crohn's almost took my life 19 years ago... I was originally DX'd when I was 14 yes I was extremely stubborn and wouldn't have it! like I said 19 yrs ago I finally gave in,,, I had the BAG for 2 yrs before they tried a 2nd time to do a re-connect...that failed because my case was to far involved!!! talk to your BF he wants to be a survivor not a statistic as I am... although I now have NO regrets, Married with kids & living a normal life and YES I DO HAVE A BAG!!! as was said by another member life does go on! Be Brave & he is so lucky to have you!

 

[Hayleymariex]

Thank you so much everyone, I genuinely never expected to get so much support It's a big comfort to hear that people do have similar experiences to both of us, as we're both so young and have never met people in this position

 

[ghostlizard]

I was diagnosed at 19 and I felt the same way about the bag thing, but I'm 45 now and have said 'no' to surgery many times. Tell your boyfriend that all the evidence seems to show that we IBD patients have the same life expectancy as everyone else (all else being equal) with or without surgery. So Crohn's doesn't by itself kill you, it can just make you wish you were dead...which is why many of us are also on antidepressants and such. Your boyfriend needs to seek psychiatric help to deal with his diagnosis. I suggest he focus on his worst symptoms and attempt to treat those (for example, when I have great pain I take Dilaudid; when I have diarrhea I take megadoses of Imodium,etc.). In this way I managed to avoid complete and constant hopelessness and wring a little joy out of life. Oh, and there's one more word he oughta keep in mind: REMISSION. p.s. I'm not a doctor, so please have him see his before he tries anything- but if surgery is the only option his doctor gives him he should get a second opinion(at least!).

 

[bjeffrey]

Awesomely said ghostlizard!

 

[Hayleymariex]

I was diagnosed at 19 and I felt the same way about the bag thing, but I'm 45 now and have said 'no' to surgery many times. Tell your boyfriend that all the evidence seems to show that we IBD patients have the same life expectancy as everyone else (all else being equal) with or without surgery. So Crohn's doesn't by itself kill you, it can just make you wish you were dead...which is why many of us are also on antidepressants and such. Your boyfriend needs to seek psychiatric help to deal with his diagnosis. I suggest he focus on his worst symptoms and attempt to treat those (for example, when I have great pain I take Dilaudid; when I have diarrhea I take megadoses of Imodium,etc.). In this way I managed to avoid complete and constant hopelessness and wring a little joy out of life. Oh, and there's one more word he oughta keep in mind: REMISSION. p.s. I'm not a doctor, so please have him see his before he tries anything- but if surgery is the only option his doctor gives him he should get a second opinion(at least!).

Thank you so much for this. My biggest fear is that it could kill him, because due to my lack of knowledge of the disease, I don't entirely know the risks. You have no idea how much this has put my mind at rest <3

 

[Lydia]

Please tell him that a bag is not the end of the world, and that its not neccessarily permanent. I used to say the same thing when I was younger. I had a bag for 6 months when I was 23 years old, and after I got over the initial shock, it wasnt so bad. I was good at hiding the bag. Nobody knew I had it till after I had everything reversed, except my closest family and friends. I even dated with it. In fact it was the first pain free time I had in a long time. I didnt have to worry about where washrooms were, and keeping things clean was easy. So there is my 2 cents. Counselling is a great idea.

 

[Hayleymariex]

So my boyfriend gave me an update today, he has to remove all fibre from his diet, and in a few weeks goes to hospital to see how food and everything moves through his digestive system. If doctors find anything wrong, he'll be going for an operation. The way he described the op' to me, is that they'll "stretch" his bowel. Can anyone explain this to me please? Worrying ever so slightly.

 

[ghostlizard]

I wish I could enlighten you a little, Hayleymariex, but I can't find any references to bowel stretching anywhere, and I don't remember any doctor ever using that term in 25 years of treatment. To do a colonoscopy they used to open up the constricted bowel with air to allow for the scope (boy was that a lotta laughs) but since they started knocking you out before the procedure I don't know if they still do that or not. The only other references to bowel stretching I can think of come from old prison movies. I'm sorry I can't help more, but I think your boyfriend is going to be fine: if he was really bad off he'd already be in surgery, so try not to worry too much.

 

[PsychoJane]

Hello Hayley, i'll try to explain a bit what I think is happening with your boyfriend. I'm not a specialist and I did not get any of these so far with my crohn but I think I know what he was refering too. Crohn disease involve a lot of inflammation of the digestive tissues. When that inflammation is chronic it may happens that tissues begin to scars and when they do, they do what is called fibrosis, which is not as soft as normal tissues. Therefore, its possible that a part of is bowel is "strictured" which is kinda not as flexible as it should be and it can cause blocking, or subocclusion. The food can't got through as it should, specially fibers cause they remain pretty intact through the digestion.

They don't necessarly need to do a very complicated surgery. It always depend of the severity of the stricture. They can sometime "dilate" the stricture by performing an endoscopy (they go in with a tube and a camera) and they expand the tissue to allow everything to flow properly. If that isn't working, they may need to perform a surgery where they remove that part.

I hope that helps you understand a little better and, as ghostlizard said, if he was really bad off, he'd already be in surgery.

Stay strong!

 

[Jessi]

Hayley, to me it sounds like he was referring to strictures, as PsychoJane said. A "deflated balloon" is attached to the end of the scope, and when it reaches the stricture, it will inflate, pushing the bowel open to the appropriate size.

I hope all goes well. :hug:

 

[Swirl]

He has to start speaking with people who is dealing with the same situation. Online and offline.
I felt the same way but think differently now.