Hello, just registered because my brother has Crohn's and he's not exactly the internet forum type. My hope was to garner some advice for his situation but now I've quickly realised he's never mentioned what medication he is on. Is it possible none? I know he has had some of his bowel removed and reading some other posts I recognise the frustration I've seen he has. He is mostly stressed, just wanting a day of three square meals to come. He thinks a stoma is the answer but is not on a waiting list for this operation. He constantly looks unwell and drinks shakes on doctors orders. He previously picked at food (mostly what I'd call junk food) but now has been told that it's shakes only, something he has done before but this time he is devestated as he doesn't think he can face that again. He is not the easiest person for a health professional to deal with so maybe I can find some advice to help him here.
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Brother has Crohn's
- Thread starter Rayin
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum, I am pleased you have decided to join to learn more for you brother.
Would you be able to find out what meds - if any - that he is on? From the sounds of it the fact he is back on shakes might mean he has a narrowing in the bowel? Was this what the previous op was for? Also do you know what shakes he is on? Another thing it may be worth asking is if he has ever had any of his vitamin levels checked.
We do have a stoma sub forum if you would like to have a read up here and get some info for him: http://www.crohnsforum.com/forumdisplay.php?f=46. One thing to remember is that this is not a cure for crohns - there is a possibility of it coming back somewhere else in the GI tract.
AB
xx
Would you be able to find out what meds - if any - that he is on? From the sounds of it the fact he is back on shakes might mean he has a narrowing in the bowel? Was this what the previous op was for? Also do you know what shakes he is on? Another thing it may be worth asking is if he has ever had any of his vitamin levels checked.
We do have a stoma sub forum if you would like to have a read up here and get some info for him: http://www.crohnsforum.com/forumdisplay.php?f=46. One thing to remember is that this is not a cure for crohns - there is a possibility of it coming back somewhere else in the GI tract.
AB
xx
- Location
- Ireland
Hi Rayin and welcome
Just wanted to say how nice it is to have siblings of fellow crohnies here. It can be such a distressing condition at times and we can find ourselves fighting to keep our heads above water and when I say fighting that can sometimes be literally, I have fought with many while in a flare as I am just too tired and fed up to deal with what is going on or more importantly whats not happening quick enough, but there can be good times also. So I just wanted to say it is a lovely thing that you are doing for your brother. help, understanding and just having a friend can sometimes be the best medicine. I hope your brother gets some relief soon.
Gwen xxx
Just wanted to say how nice it is to have siblings of fellow crohnies here. It can be such a distressing condition at times and we can find ourselves fighting to keep our heads above water and when I say fighting that can sometimes be literally, I have fought with many while in a flare as I am just too tired and fed up to deal with what is going on or more importantly whats not happening quick enough, but there can be good times also. So I just wanted to say it is a lovely thing that you are doing for your brother. help, understanding and just having a friend can sometimes be the best medicine. I hope your brother gets some relief soon.
Gwen xxx
I've been on the liquid shake diet before, and trust me, his distaste for it isn't an overreaction, it's vile! It feels like you're just being controlled, and something that should be enjoyable, like a meal, just isn't. It ends up as a task. When I did it, I was allowed glacier mints, and I managed to find fruit flavoured ones, because they have no actual food content, so if you ever want to cheer him up, I'm sure he'd appreciate that!
I have a stoma now though, and I think he's right, I think it is the answer. If it was me, I'd push to go on a waiting list, keep on at the doctors and consultants! I've never felt this well and haven't even had it three months yet
I hope he finds the right thing one way or another though, and I think it's awesome that you're doing this to help him!
I have a stoma now though, and I think he's right, I think it is the answer. If it was me, I'd push to go on a waiting list, keep on at the doctors and consultants! I've never felt this well and haven't even had it three months yet
I hope he finds the right thing one way or another though, and I think it's awesome that you're doing this to help him!
What's the name of the shakes? If it's Elemental 028, literally nothing else needs to be said. They are beyond vile and should be passed unfit for human consumption. If it's Fortisip, well they're a bit yukky too, but at least just about drinkable.
Stoma's a possibilty; he needs to speak to a colorectal surgeon. His gastroenterologist can get him a referral to a colorectal surgeon. It depends on where his disease is based whether he will be suitable for one though - colon, yes, small bowel, no.
Also find out what meds he is on/has been on. If he's not yet tried a biologic (Remicade or Humira), they are worth a try. The mild drugs eg Pentasa, Asacol are useless for severe Crohn's. Steroids work as a short-term drug for stopping acute flare-ups in their tracks, but not for dealing with more chronic disease that never goes into remission.
Your brother's depression is understandable btw; this disease just grinds you down eventually, I have had enough of it and am seeking to get a stoma as well.
Stoma's a possibilty; he needs to speak to a colorectal surgeon. His gastroenterologist can get him a referral to a colorectal surgeon. It depends on where his disease is based whether he will be suitable for one though - colon, yes, small bowel, no.
Also find out what meds he is on/has been on. If he's not yet tried a biologic (Remicade or Humira), they are worth a try. The mild drugs eg Pentasa, Asacol are useless for severe Crohn's. Steroids work as a short-term drug for stopping acute flare-ups in their tracks, but not for dealing with more chronic disease that never goes into remission.
Your brother's depression is understandable btw; this disease just grinds you down eventually, I have had enough of it and am seeking to get a stoma as well.
had both, but I agree, fortisip are the better option by far! Especially the shakes, not so much the juices!
Also, talking about medication, I was on Infliximab for about six years, it's a very strong one, but it's so good! I'd be wheeled there in a chair for the infusions, and walk out at the end (after having have eaten, too!) of the three hours
Also, talking about medication, I was on Infliximab for about six years, it's a very strong one, but it's so good! I'd be wheeled there in a chair for the infusions, and walk out at the end (after having have eaten, too!) of the three hours
Wow, I know I haven't been logged in for a week but I have been using this forum and found some great advice straight away, mainly from a post stating that they just wanted to rant and having someone to listen to them was a help, so i have subtley done this for my brother. He ranted for quite a while, twice Thank you to everyone who has sent me a reply. The shakes he has are called ensure and i have tasted them, I could stomach one and they are not a necessity for me so I understand a little of his frustration. Still do not know what meds he is on (don't like to push but I will find out through more conversations) although someone mentioned levsin was great for them and i mentioned this to him, he says he has already tried this drug.I now hope he gets his stoma as he says he knows his body and this is what he needs and i believe him. He has been operated on for a narrowing of the bowel as asked. Thank you again, I will persist with this site now after reading my replies, thank you also for the glacier mint suggestion, will definitely give this small gesture a try
Thank you to everyone who has sent me a reply. The shakes he has are called ensure and i have tasted them, I could stomach one and they are not a necessity for me so I understand a little of his frustration. Still do not know what meds he is on (don't like to push but I will find out through more conversations) although someone mentioned levsin was great for them and i mentioned this to him, he says he has already tried this drug.I now hope he gets his stoma as he says he knows his body and this is what he needs and i believe him. He has been operated on for a narrowing of the bowel as asked. Thank you again, I will persist with this site now after reading my replies, thank you also for the glacier mint suggestion, will definitely give this small gesture a try