Help for my Brother!

[SistertoRy]

Hi everyone. My brother is 29 years old and has had Crohns for the past 20 years. He's had two surgeries to remove parts of his intestines and another to remove his gallbladder.

The past three years have been terrible for him. It has been during this time that he's had the surgeries and also SO many flareups. Seems he can't go longer than 4 weeks without one. they are so bad that he goes in for IV pain control until the "seeming Obstruction" passes... he's worried that he'll be addicted to pain medication it's been so bad.

The past two days he's been in severe pain and has been to the ER twice. His doctors (mayo clinic) have said that he should be near or at 100% better by the time he's had 3 more infusions of Remicade since they upped the schedule to every 6 weeks instead of 8... (trying to get in better control).

Now, his hemaglobin is at 6.8 and last night they sent him home from the ER (we live HOURS from the mayo and his doctors) after seeing that... and basically some air on the xray. They gave him one dose of pain med (he was in severe pain) and sent him on his way. Now, he's back there with the severe pain and uncontrollable shaking.

I'm VERY worried about him... his metal health with dealing with all this, his physical health too of course.

He also has complained (after drinking heavily, or he wouldn't have opened up) about his rectum and area between rectum and scrotum as being like "razors" he said his bottom hurts so badly that he can't hardly stand it... he uses powders and creams to make it through the day. He's terribly worried that his Crohns has moved to his rectum area.

His BIG fear is that he'll need a colostomy bag. He says he REFUSES to do this. I figure his quality of life can't get much worse than this... go for the darn bag and let it heal! OR if necessary get rid of it all... but of course I also understand his fear and anger that he has to deal with this disease at all.

He smokes too and his doctors have said NO... but again, I understand that he feels that it makes him feel better.

I just don't know where to turn for help with him. His doctors at mayo seem to think surgery is next (the three doses of remicade that were supposed to help haven't seemed to do much good) step, and he worries that he'll just get smaller openings from scar tissue if he keeps on with the surgeries.

Ugh.


- I'm a bummed big sister...

 

[SistertoRy]

Here's an update. ER doc tonight says he's admitting him and giving him 2 units of blood. (he wondered why the ER doc last night sent him home ... ER last night said he was young and as long as he wasn't having any symptoms his Hem would be fine)... ER doc tonight will call mayo tommorow and talk to his doctor there. He says the remicade is NOT working and that they will be doing surgery.

My brother is adamat that they NOT do surgery. He fears that they will need to do a colostomy and that every time they do surgery there is more narrowings from the scar tissue at the resect site...

 

[SistertoRy]

Again an update... they gave him 3 units of blood, and we're waiting for a CT result.


Does ANYONE have any advice?????????????????????????

 

[Jeff D.]

I wish your brither best of luck. I love seeing people actually caring about people with this illness. Best of luck.

 

[D Bergy]

My Gastro guy wanted to put me on Immuran. He has had the best results with this medication. I am not taking it because I am not suffering like your brother and I would rather get rid of the root cause, if possible. I can not personally say if it is good or not but you may want to ask the doctor about it.

I believe Immuran is actually an anti-rejection medication that is used in transplant patients. Basically it is an immune suppressant which I suppose could help in his case.

Hope he can improve soon. I feel sorry for those that have these terrible symptoms.

D Bergy

 

[Kev]

If the docs are contemplating surgery, I don't think they'd start him on imuran. As an immuno suppressor, you wouldn't want it kicking in at the time he'd be recovering from operation. I have a similar reaction to your brother to the idea of colostomy. I haven't yet reached that stage in the course of my illness where I have to realisticaly face the possibility. Thing of it is, there are plenty of people on this site who have faced it, and are living a good life post op.. Some of the feedback I've read from them have me re-thinking my initial stance. I think your brother would benefit from that... Not as a means of talking him into it, but as a way of seeing there is life, and from what I hear, a pretty good one afterwards. I get the feeling that your brother is just at a very low point, physically & emotionaly and that he would benefit from coming to a site like this, ranting, raving, voicing his outrage at what this disease, the whole medical rigmarole, does to someone. And in learning he isn't alone, that life doesn't end with this disease, and that he has options. He also might need a slap on the wrist from those of us with it so he can look at those options, like the smoking thing. we are all to familiar with all of it

 

[SistertoRy]

Thanks so much for replies. I'm feeling so helpless. I think you've hit the nail on the head with the way he's feeling. I think he's very depressed...

Today they gave him 3 units of blood which raised his hema. to 9.0... the new doc on call says that he believes his trouble is in the small intestine where surgery won't help him... he thinks maybe a pick line and no food for a few weeks might do the trick...

he goes to the Mayo on Friday, for colonoscopy etc. But until then he's at home... still pooping blood.

I told him about this site... and hope I can get him here to talk a bit... he said "so what"... I'm gonna keep working on it...

Until then...

Maybe some of you could post a message to him about how you are doing etc... what meds you've tried... what worked for you, what didn't, how your mental health is doing, etc?

I'd print it off for him...

I'd be very grateful...

 

[SistertoRy]

I forgot to add that they also started him on Pred....

I'm anxious for your thoughts to send his way.

 

[Kev]

Ever try to get a baby to take it's first steps? If they aren't ready, you're wasting your time. and I'm not saying your brother is being a baby.. no, not in the least. it's a case of.. when something like this hits you, you first turn inward on yourself, and pretty much stay there until you are ready to come out and deal with all of it. That is what I think may be going on. I don't know about your brother, but for most of us males, the more someone tries to pressure us to do something we aren't ready for, the more we dig in our heels. I, for one, am a past champion at this approach. Big sister love can only do so much. Your brother has to want to get into the fight for his health. you've told him about this site, maybe now you need to take a backseat, see if he wants to stand.. try a few baby steps.. and to be there if/when he asks for your help. Personally, having a woman see me at my lowest/worst is something I find very difficult to cope with.. even if just my sister.

I dunno if any of this really pertains to your brothers situation. Hope if it is that it someway helps. As for pred, I write a daily diary of my experience with that med.

 

[D Bergy]

Well said. It is a male thing for sure. I went round and round with this with my wife. Long story but suffice to say that Kev described it perfectly.

D Bergy

 

[Cara Fusinato]

Hang in there and keep your brother's spirits up until the medical community decides the best course. Tell your brother there are a lot of us who have battled back from mild, moderate, and severe symptoms. And no matter what he wants or not wants to do, he needs to listen to the doctors. He's not new to the illness so he is not in the total denial & shock stage, so listen and proceed wisely.

 

[Kev]

Actually, I wasn't so much referring to the phases.. shock, denial, anger, acceptance..
But to something we males do periodically.. It's more like a fight or flee scenario.. If you (as a male) are threatened/confronted by something, even a serious illness, and you reach a stage where you aren't winning, you retreat. These come & go in cycles.
Dr John Gray first made this theory popular in various of his books.. like Men are from Mars, Women from Venus. Now, personally, I'm not very impressed by his overall credentials, but his 'generalization' of a common male failing is one of the 'truest' of the male species I've seen in print. Despite a loathing to accept/admit to a lot of 'generalizations', in some cases (like this) there is more than a kernal of truth to them.

Now, I've never first hand experienced anyone who could get me to come out of one of these 'retreats' when I've gone on them, and I think I'm about as 'typical' a male as one might find. It's not so much a crohnie issue, or severe illness issue, as a 'male' plight/curse. And regardless of how close you are to your brother, its a fact that men are men, women are women, and never the twain will meet. amen!

 

[ruthymg]

Hi, I'm so sorry to hear your brothers going through a tough time, I too have seen my brothers suffer and its devastating. Its fantastic that you brother has great support from you, keep it up, he may reject it at first but eventually he will realise how much he needs it. I just wanted to say, that I have a "bag" an ileostomy to be precise, from the small bowel after having a section removed last summer. I've had it now for almost 12 months and to be honest, at first, when I was told I needed one, I was totally gutted. I think I cried on and off for about 3 months after the surgery, I then accepted that I was depressed and not dealing with things very well so I went to see my GP, who gave me some anti depressants (I was also concerned about taking these with all the bad hype they get, but there was no need) Since then I have felt so much better, I had a terrible time before surgery and really was at my lowest, now I feel soooooo much better, I have put on 28 pounds and look healthy again. Emotionally I am also a lot better. Its really not the end of the world having a bag, it certainly improves your quality of life. I know how your brother must be feeling, as I probably felt exactly the same way, I too am young (32 when I had my surgery) and felt embarrassed by the whole thing. I now realise there was no need to worry so much, nobody can see my bag, it doesn't affect my life much. Yes I have had to make a few adjustments but nothing major, I even tell people quite openly now that I have a stoma, I even quite enjoy seeing some peoples reactions lol

As far as the pain your brother describes in his bottom end/rectum, I too had major problems down there with fistulas (abnormal tunnels that link pieces of bowel together) and abcesses and the pain was indescribable. Its important that your brother gets over his embarrassment and gets this checked out, because if he has fistulas, they can cause major damage. Mine, by the way, have totally healed since having the stoma/bag and resting my large bowel and rectum. I have never taken Remicade and don't think I will, but I have taken Imuran, Pentasa, Asacol, Prednisolone, Mebeverine and various antibiotics and antihistamines. If you brother needs to chat to someone who has had similar problems to him and can relate to how he feels with the age thing and all, feel free to tell him about me and I'd be happy to chat to him. I hope things start to look up for him soon. Best of luck



Ruth

 

[bunnygirl]

Good sister

You sound like a great sister, your brother is lucky to have someone who loves him so much. My 15 year old brother was diagnosed with crohn's last week, and is in the hospital as we speak, it's early days so we don't know much, but we are hopeful.
I am happy to say that I also know of a true success, my boyfriend of 3 years also had crohn's as a teenager, and has had a colostomy for almost 15 years after having much of his intestines and his colon removed.
He is soooooo healthy, he has a beautiful girlfriend (me!), he leads a perfectly normal life, and he could stand to lose a few pounds at this stage in his life. I wish your poor brother could see what a non issue the bag is, and that life will go on if he needs one.... and hopefully a better, happier life!

good luck