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Hello, I'm new & in pain watching someone suffer :(

Hi there, I'm reaching out for some support to help me support someone else.
My best friend is 42 and started suffering only 3 years ago. He was diagnosed quickly with 'suspected' Crohn's. Back then, steroids didn't help him but a course of antibiotics very quickly seemed to sort him out and he stayed well for a couple of years.
Just before Christmas, he developed a fistula and with head in sand, ignored it having no idea that it could be related to Crohn's. He had surgery aprox June of this year to resolve this and is currently waiting for his seton stitch to be removed.
A week or so after his surgery, he developed an awful Crohn's flare up resulting in a CRP level of over 270. After much persuasion, he was in hospital for a week & a half on a cocktail of 3 antibiotics fed by drip. They did little to lower his inflammation so he started Remsima and 2 days later was allowed home with a CRP level of 120.
It looked like he would progress initially, but this quickly stopped. He had his next dose 2 weeks after leaving hospital and the following day, felt an improvement which again declined quickly. After a further 4 or 6 weeks he had the next dose (just this week) and is feeling as bad as ever. Just prior to his last infusion, his CRP level had raised to 150.
The original plan was for him to go onto 6 weekly maintenance doses next but I presume he's not in a position for that now. I say presume, because we're so in the dark about everything. Nobody has spoken to us about what his diagnosis means, what his future looks like, what the illness is about, what his options are - what we are learning comes from the internet, such as the fistula association.
He's barely eating and has dramatically lost weight. I'm deeply concerned that his body is going to fail as a result of that too.
We asked his specialist for a referral to a dietician in the beginning but this was dismissed as if it wouldn't help. Is that true?
A sympathetic GP referred him to one recently and she was horrified that he'd not seen her before. She provided him with a very bland diet plan that she said would leave nothing undigested but he's too ill to eat any of it. He has some Ensure Plus drinks but struggles to manage those too.
He has a gastro specialist appointment this week and I really want to understand what questions I should be asking. This is the first I'll be attending - I've insisted on going because he's so unwell, he hasn't got the fight to challenge (where appropriate) or ask questions. He's happy for me to go in with him.
I'm so afraid. I can't believe how unkind this illness is and how strong you all must be to cope. If you have any tips - for him as a sufferer or me as someone who is literally his only support person (his choice) - I'd be so grateful.
Best wishes to everyone.
 
Welcome. I am sorry for all your friend is going through. He is lucky to have a friend like you. I have a nutritionist. It might be good also if your friend kept a food diary to let them know what foods aggravate their system. With the Ensure, I would read the label. Some of the Ensure products have carregeenan which is bad. I wish you and your friend the best. Keep us updated.
 

Tony H

Well-known member
Hi Yamuna2 , well done for being such a good friend , having an advocate with him esp when he is so ill will make all the difference ,
i have just started Remsima (REMICADE ) myself 3 days ago after being in hospital for a while , i was lucky to have no infection , but the remicade is said to be one of the fastest working drugs of its type ,and it seems to be gradually helping me ,
Is he taking oral antibiotics and steroids as well .?
 
I an sorry. I didn't realize there was another name for remicade. Maybe he needs to have doses of remicade more often. That is a good question for the doctor.
 
Thank you both so much for taking the time to reply, I appreciate it :)

Ronroush7, we were keeping a food diary until about a week ago. He's not eating anything to put in it now, not even taking the Ensure drinks. He's in so much stomach pain all the time. I'm not actually sure now whether that's the Crohn's or a side effect to the Remsima.

TonyH, other than my friend, I've only heard really positive stories about the results of Infliximab drugs. I hope it works for you. He was on a 6 week course of Metronizadole at the start but nothing now. His gastro wouldn't give him steroids at the time he started the infusions, I believe that might have been to do with the fistula? He thinks he needs them and maybe the gastro will prescribe them this week.

He's struggling. He's unable to do anything but lie on the couch and sleep or lie in bed and sleep. He's can't even focus on the TV to take his mind off it and certainly can't do anything that requires more attention than that. Feeling like nothing is working makes it look like he's staring into an abyss.

I desperately want to see some light at the end of the tunnel with him but there's nothing right now.
 
Has he had trough level testing for the remicade and/or antibodies level testing?

Remicade can be adjusted in dose or schedule. Other meds such as imuran, 6mp or methotrexate can be added in combination to the remicade. A run of steroids like prednisone or entocort could also be added.

Some CD patients can't tolerate polymeric formulas like Ensure and need to be prescribed semi-elemental or elemental formulas. These are less palatable so some choose to take them through an ng tube. My son did supplemental enteral nutrition with a semi-elemental formula. He would insert his naso-gastric tube each night and take in the formula while he slept then remove his tube each morning. Others choose to leave the tube in throughout. When you do formula only it is called Exclusive Enteral Nutrition. Since my son was only doing it for weight gain to prepare for surgery it was Supplemental Enteral Nutrition.

Although, remicade (remsima) works well for most, some people are primary non-responders meaning they don't respond to the remicade. Still others can be secondary non responders meaning the drug works for a short time then doesn't. Remicade did turn my son's symptoms around but it never controlled his active inflammation completely so he had to move on from remicade. It's seems early for that decision with your friend.

Testing may be helpful in determining the severity of inflammation levels. Scopes, imaging etc can allow the GI to see where your friend stands as far as. In fact, that would be one of the first things I'd ask for.
 

my little penguin

Moderator
Staff member
In the U.K. There is modulen which is semi elemental formula that some can tolerate others need elemental such as neocate jr vionex or eo28 splash
Those should help with nutrition
Ds needed higher doses of remicade (7.5 mg/kg every 6 weeks) but it can go up to 10mg/kg every 4 weeks if needed
High dose is 20mg/kg every 4 weeks -only a few are that high
Agree with adding 6-mp or methotrexate to remicade to give it a boost
 
Hello, so sorry for what you both are going through.
As a maybe to ask about: Metronizadole can cause stomach pain for some, like a gastritis type feeling, making eating difficult. Some are helped by a acid reducer.

What about broths?

I know it is difficult to eat or drink while feeling so awful, but please tell him he really needs to get nutrition to fight this illness. You have to arm your body to fight, give it strength to fight on. Small portions can help. Some nutrition drinks can feel heavy after consumed, try small amounts over the day, slowly building. Yogurts are soothing for some. Tofu for protein, miso soup ;)

Have they checked to see if he might be struggling with cdiff? From the antibiotics?

Stay strong as you both can. Be well, God bless you both.
 
Thank you again, so much for all of your advice.

I've not heard of trough testing, so will look into that. I suspect this isn't something that has been done.

I do feel that he needs to go onto some sortbof Elemental diet but the tricky thing is that nobody seems interested enough in talking about options with him. He's never once been talked theu treatments, what they mean, what they're doing or their expectations for them. He's in the gastro's office for no more than 10 minutes and has no faith in them at all.

He can't remember a time he last felt well or 'normal'. All he knows now is lying on the couch, in pain, unable to eat or function - this has been months now, since before Christmas. Understandably, he's suffering from very low mood too.

I'm interested to learn that cdiff might be an issue. I know nothing about it at all. I'll read up on that.

Thanks so much everyone. I'm so grateful for your comments.
 
Hi everyone

Just a quick note to update you seeing as I was so, so desperate before and you all stepped in with sympathy, comfort and reassurance.

I did attend the gastro appointment with my friend and thankfully, we had a sympathetic specialist. He was whisked away for a residential stay in a hospital about 30 minutes from where we live, and for an emergency CT scan. In fact, despite a different doctor seeing the same blood test results results only a couple of days before, this gastro knew before he had even seen him that he would be sending him off to hospital urgently.

The gastro felt that the Infliximab probably was working (due to fistula healing and bowel movements improving) but he felt a hard mass in his lower right front. He suspected either a iliosigmoid knot or a right iliac fossa.

The CT scan showed nothing but very nasty inflammation so he was put on 60mg intravenous steroids and I'm delighted to say they started working pretty quickly. Within a week, he's eating (and when he's not eating, he's thinking about food) and finally seeing that he has potential for life again! The consultant at the hospital has said that he expects he'll need some of this area removed within a couple of years but my friend isn't worried about that.

I've visited every night, and spent my days off in the ward with him and have seen progress before my eyes. I can't tell you how relieved I am. Well, I can - I cried all the way home last night but for the first time in weeks, that's been with relief and not fear.

And now I'm tearing up again. I said this would be a short note too.

Oh - and given the dismissive care by his prior professionals, I'm delighted to say I have walked away with the consultant's secretary's phone number in case we need help again in the future! :thumright:

I said this before, but I'm going to say it again. I think that what you cope with is astonishing. Thank you for opening up in support. I'll see you on another thread! :)
 
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So very good to hear. I am once again so thankful to share in the great news of another feeling better. What a wonderful person you are to care. (thank you!) With prayers that he (and you) will continue to grow stronger, and heal. May life be good, and full again.

Be well, God bless.
 
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