Advice please.

[marcus]

Hello, haven't been on here for a while and my little brother has been having a hard time of it really, he has been getting upset and feels like he's not getting anywhere, he was diagnosed in september last year, since then has been on a three month course of prednisolone that unfortunately didn't really help his symptoms, also he is still on 125 mg azathioprine, but the doctor said because it's now coming up to the four month mark of taking it with little affect, we may stop it and try something else, also been on pentasa and that didn't help either so that was stopped.

We a also recently tried a liquid diet, but although he tried he just could not handle the taste and the amount needed to drink would have been a problem for him so that was a no go, so far he has had a colonoscopy, and scan for the small bowel, the doctor said his small bowel results were good with no problems, so on the last visit they were talking about maybe going back on the prednisolone, but he had a hard time when on this last time with different side affects, and the fact it didn't really work for him, will make that hard for him to do again.

They also mentioned about (spelling) infliximab, but said it was a relatively newish treatment for crohns, and long term affects may or may not be a factor when taking this. So to sum it all up he has just been having a miserable time of late, needing to go the toilet up to eight times a day sometimes and on occasion with blood, he doesn't really get pain, but feels tired alot of the time.

I feel so sorry for him, i just can't believe there are no better treatments out there, i was following someone on here called HookwormHost who was having helminthic therapy, but he stopped posting, if anyone knows of people who have done this let me know, i'm seriously thinking of getting this for my brother. We just don't know where to turn or what to do any advise would be great, thanks.

 

[Astra]

Hiya Marcus

so sorry brother isn't doing so well at the mo and that the combo of Pred and Aza isn't helping neither.
Check out the Remicade Club (we call it Infliximab in UK) there are so many success stories with this med.

http://www.crohnsforum.com/showthread.php?t=4544&highlight=remicade+club

xxx

 

[HelminthicTherapy]

Read my note: http://goo.gl/V48kQ - it should answer most of your questions. Make sure to follow all the links in it.

 

[Absentminded]

Sorry that your brother is having such a hard time.
I too found that aza, Pred and asacol (similar to Pentasa) did not work for me.
I have however had success with infliximab. As Joan said, the remicade club has loads of success stories! Although it doesn't work for everyone, it has been my lifesaver.

I hope He finds something that works for him too soon!

 

[marcus]

Had a letter through the post on saturday saying they wanted to admit my brother to hospital to have IV steroids, so he was not very happy as he hated being on the prednisolone last time and it didn't really help the way everyone wanted. When we turned up this morning we were told that no beds were available and they will phone us when one is ready, i was just wondering how bad other people are before they feel prednisolone is needed, it's just that he is going to the toilet around 2 - 7 times a day and this is his only symptom really apart from the odd occasion of blood, i have seen people on here going much more and not being on pred, it's just we don't really know how to gauge his symptoms in terms of how bad he is or isn't.

Just want to say thanks for the heads up on the infliximab/remicade i wasn't really sure if they were the same thing, i think the doctors might go down that route depending on how he gets on with this second course of pred.

 

[Cookie]

Marcus,

Going to the toilet 2-7 times per day is not unusual in the life of a Crohnie, even when not flaring. I think the bigger question is, is he losing weight? Also, have they tested his blood for anemia and vitamin deficiencies? These are two of the big reasons for concern with frequent bowel movements. I think that if your brother has not had success with any treatments so far, he should consider the Remicade option. It sounds pretty extreme and scary at first, I'll admit, but I found it to be surprisingly easy and had no side effects at all. It definitely helped bring up my energy level.

Good luck to him and let us know how he is getting along.

 

[Astra]

Hiya Marcus

I can't remember where your bother's Crohn's is? How about Entocort which is also a steroid but non systemic, meaning it only releases once it's in the small bowel and bypasses other organs so the side effects are minimal, unlike Pred.
Either of them would knock inflammation on the head.
good luck, hospital isn't fun!
xxx

 

[marcus]

Went back to the hospital yeterday and the doctor decided to start my brother on another course of prednisolone, but starting at 40mg instead of 60mg, they sent us home around 10:30 last night, i think they were in two minds whether to start him on infliximab, but said we will try one more course of prednisolone first, i did ask about entocort and he said it has more success when crohn's is located in the small bowel so would not be suitable, and also mentioned he has not had much success using it with other patients, plus the fact it is expensive, but said that would never be a deciding factor if he thought it would work.

I will say i was worried when we spoke about infliximab and what is involved, i just hope the prednisolone works for him, i feel bad for him his skin is only just starting to clear up from the last course of prednisolone.

I just have a question if anyone can help, he has been getting a new symptom lately, when he wakes up in the morning he is finding he has a small amount of runny liquid in his underwear not every morning, but he is finding this really distressing as this morning he had more than usual, i have told him he can't help it, but he is really upset over it. He does have skin tags and i'm not sure if they have something to do with it, if anyone can tell me if they know how to deal with this, or is it more a case of trying to get his crohn's under control.

Thanks for the help.