Nervous

[Snookums]

nervous

Finally after two and a half yrs of suffering my docs have decided to start me on remicade. MRI results have found that my small bowel is a lot more affected than originally thought. I am at the point where I am willing to try anything to try to make life a lil more normal as my symptoms are progressively getting worse once again.

My dilemma here is that although this is going to probably be quite effective with helping the small bowel to recover, I unfortunately have narrowing at ilieum, and the risk is quite high that this may actually fully close over. I am extremely nervous about starting the new meds and can only hope that its going to work at calming down both the inflammation and the narrowing.

Has anyone taking remicade had any experiences they wish to share regarding the effectiveness of this treatment when there is clear evidence of narrowing. The site where the narrowing is, has produced an abscess which was successfully drained around the time of my diagnosis (dec 2008). There is no evidence to suggest this is back but its very clear this section is predominantly responsible for the majority of my symptoms.

I am definatley going to give this drug a go as I know its my last step before an op. I want to remain as postitive as I can but in the back of my mind I cant help but wonder if this is going to push me into the operating theatre quicker than one would have liked.

In saying that I know this is out of my hands and I really do understand that I am better off to deal with whatever happens, when it happens. Just had to share my thoughts as I feel I am entering territory I dont have enough info about.

Please share as much info as you can! :sign0085:

 

[Snookums]

45 hits, no responses, dont take it personally springs to mind!!!!! me so funny

 

[Sha0913]

I am on Remicade, it works wonders for me, I have some narrowing throughout from a small bowel ressection and the remicade has helped tremendously. Hope this helps bit. Shannon

 

[Snookums]

Cheers Shannon.
I Start my remicade next friday 24 june. Am surprised at how quick its going to get started but feel this is going to do wonders for my health. Something has to change and although I am nervous I am also trying to be positive and really feel this is going to be a welcome to hopefully a less painful life.
Thanks again for comments, couldnt not take the piss out of myself in my own response to thread.

 

[scoutfinch]

Remicade has worked very well for me (started it nearly two months ago). I had narrowing in the middle part of the small intestine as well as ulcers in the large intestine, which were causing me daily pain - sometimes excruciating. I still have mild symptoms and occasional strong pain, but overall feel about 95% better than before starting the treatment.

Like you, I was very nervous in the weeks up to my first infusion - even almost changed my mind about it. Now my only concern is that it will stop working.

 

[Snookums]

Cheers scoutfinch,

I have been here before and we (docs and myself ) decided that remicade might not be my best option due to strictures. Now about 8 mths later and we are going to go ahead, so one can only hope the results are going to be a much needed improvement at the least. There are risks in all treatments and once you find something that does work you can only hope it continues to do so. Im hoping this is going to work wonders for me as I couldnt tell you the last day I had where I was feeling ok. Have had constant pain and weakness for some time now and really need something to help with these unbearable symptoms. Starting Remicade in exactly one week today and trying not to worry too much. I am hoping this is the miracle drug for me, as it seems to be descibed by many on this forum as exactly that. If I see a noticeable difference as quick as others have, I will be stoked. Take care.

 

[Scarlet O'Hair]

How long (in general) is it until it stops working for folks? I have just had my third infusion, and have noticed some postive changes already.

 

[Misty-Eyed]

Hi Snookums!

Yes, I have been in this position before! My GI wanted me to go onto Remicade when they found my strictures, which are quite extensive.

I had 3 infusions in total although by the end of it, my symptoms came back before the next infusion. So in the end we decided that the risk of the strictures scaring due to the remicade and the limited time I was feeling better for due to the remicade was not worth it.

Luckily I was put on methotrexate after and it worked like a treat for a good few years. Have you tried it before? Unfortunately it ended up damaging my liver a little so I had to come off it. Now I'm still feeling well but they are worried about the strictures as they are so long and I've had them for years. They wanted to get me on imuran but I've already tried it and it didn't work well so it may be surgery time for me...

Hope you have more luck!

 

[Snookums]

Hi misty-eyed,

Thank you for sharing your experiences with me. I have heard that Remicade can stop working at any time and that is the overall concern for many. But when you have severe stricturing that is not quite causing a blockage but is almost there, and you are being pescribed something that could work so well it may just close it completely, its a normal response to question if you are doing the right thing. I can only imagine that you were having the same thoughts I am. With these unknowns we have to try it before we find out and thats the scary part.

I havent tried methotrexate, but who knows it could be my next avenue if the remicade is unsuccessful. My best friends husband was diagnosed with crohns about 5 yrs before me and he was on Methotrexate for a bit so I know a lil about it.

Surgery in our case as with many others really is the last option so if you have tried everything else unfortunately there is no other option. Doesnt make it any easier I know. Surgery has been looming for me in the background all along. I made a lil comment to my GI about how lucky I thought I was not being rushed in, diagnosed and then having surgery all in my first sign of symptoms. I rocked up to ER with severe abdominal pain which ended up being an Abscess that needed draining due to a small perforation in my bowel and then was diagnosed after further tests with crohns. Until they starting handing out the 20 odd scripts I needed to fill on my release date I had no idea how sick I really was. He told me that they were going to operate there and then and at the last minute changed there minds.

I am grateful I have been able to try all other types of meds before having surgery but you have to wonder if its worth all the grief when you cant seem to find anything that wants to work for you. Unfortunately we have to explore all avenues as no one wants to have the surgery. Keep us updated about whats next for you and I will let you know how things go on Remicade. Take care