- Joined
- Aug 19, 2015
- Messages
- 3
Hi, I'm new here!
Back in May I went to A&E with bad abdominal pain and after a CT scan a small bowel stricture was discovered which was "suggestive of Crohn's". I ended up staying there for 5 nights and was put on two types antibiotics and a high dose of Prednisone.
Once discharged from hospital I completed the course of antibiotics and over the following weeks came down from 40mg of Prednisone to 5mg. After a few weeks on 5mg I had a few "niggles" again, so after checking with my GP I bumped it up to 15mg, stepped down to 10mg, and have been on that ever since without any real problems. I'm pain free and my life isn't really affected in any way at the moment, aside from remaining on a low-residue diet.
All of the above was following around 18 months of pain pretty much daily. The pain would come on anywhere between 2 and 20 times per day and each time last anywhere from 10 seconds to 1 minute before completely passing. Up until I ended up in A&E, this was always dismissed as IBS by my GP.
Anyway, once out of hospital I was referred for an MRI scan to have a closer look at the problem. I had this and went to see a consultant surgeon, who agreed that as it seemed to be under control with the steroids, surgery didn't seem a sensible choice at the moment. He did however say that there was still some inflammation showing on the MRI (but was pretty vague about it when I prompted for detail). Once I confirmed that I wanted to go down the drug route, he told me to wait for 5 mins while we went to speak to a Gastroenterologist. Once he returned he referred me to an IBD nurse to discuss going onto biologics.
Fast-forward to today and I've been to see the IBD nurse about my options. I've basically been given a choice of Humira or Remicade. I suggested that out of the two Humira would make sense as I wouldn't have to come into hospital for hours each time. I was told the plan would be to treat with Humira and 6-MP, and was taken through all of the side-effects and risks, ranging from increased cancer risk to liver problems to heart problems and more!
So here's the thing. I feel pretty good and my life isn't affected at the moment. I've never had diarrhea or constipation, I've never felt lethargic (even though I've recently started on iron tablets to treat anaemia), and I'm *touch wood* pain free! If I was suffering then I'd be able to weigh up the pros/cons etc, but as I feel well I can only really see a load of negatives on what seems to be a pretty aggressive treatment option. To list out my concerns:
So, I know there are lots of people on here with lots of experience on the available treatments and the subject of Crohn's as a whole. I'm really after some thoughts on my story and concerns? Are they valid and do the biologics seem a sensible treatment option given my circumstances? Should I seek a second opinion? Does anything else stand out?
Back in May I went to A&E with bad abdominal pain and after a CT scan a small bowel stricture was discovered which was "suggestive of Crohn's". I ended up staying there for 5 nights and was put on two types antibiotics and a high dose of Prednisone.
Once discharged from hospital I completed the course of antibiotics and over the following weeks came down from 40mg of Prednisone to 5mg. After a few weeks on 5mg I had a few "niggles" again, so after checking with my GP I bumped it up to 15mg, stepped down to 10mg, and have been on that ever since without any real problems. I'm pain free and my life isn't really affected in any way at the moment, aside from remaining on a low-residue diet.
All of the above was following around 18 months of pain pretty much daily. The pain would come on anywhere between 2 and 20 times per day and each time last anywhere from 10 seconds to 1 minute before completely passing. Up until I ended up in A&E, this was always dismissed as IBS by my GP.
Anyway, once out of hospital I was referred for an MRI scan to have a closer look at the problem. I had this and went to see a consultant surgeon, who agreed that as it seemed to be under control with the steroids, surgery didn't seem a sensible choice at the moment. He did however say that there was still some inflammation showing on the MRI (but was pretty vague about it when I prompted for detail). Once I confirmed that I wanted to go down the drug route, he told me to wait for 5 mins while we went to speak to a Gastroenterologist. Once he returned he referred me to an IBD nurse to discuss going onto biologics.
Fast-forward to today and I've been to see the IBD nurse about my options. I've basically been given a choice of Humira or Remicade. I suggested that out of the two Humira would make sense as I wouldn't have to come into hospital for hours each time. I was told the plan would be to treat with Humira and 6-MP, and was taken through all of the side-effects and risks, ranging from increased cancer risk to liver problems to heart problems and more!
So here's the thing. I feel pretty good and my life isn't affected at the moment. I've never had diarrhea or constipation, I've never felt lethargic (even though I've recently started on iron tablets to treat anaemia), and I'm *touch wood* pain free! If I was suffering then I'd be able to weigh up the pros/cons etc, but as I feel well I can only really see a load of negatives on what seems to be a pretty aggressive treatment option. To list out my concerns:
- In all of the literature I've read Humira is listed as a "last-resort" for "moderate to severe" sufferers where "other treatment hasn't worked". This doesn't seem to fit the bill for me? I have also read, however, that more consultants now have a "top down" approach as they want to get on top of the inflammation (though I don't know why).
- I've read some studies that show Humira having a negative effect on strictures, which I have, which worries me?
- I don't feel like I know enough about my stricture. All I know is it's a "small bowel stricture". Should I know how big it is? If it's simply inflamed or made up of scar tissue that's built up? Can they see that from a MRI? The lack of clarity on what's going on in there makes it hard for me to make a decision on the treatment!
- I get a general feeling that the process of treating Crohn's is being "one-size-fits-all" and I don't feel to date like I've been treated as an individual case. This may be the norm but I can't help feeling that this may not be the best thing for me.
So, I know there are lots of people on here with lots of experience on the available treatments and the subject of Crohn's as a whole. I'm really after some thoughts on my story and concerns? Are they valid and do the biologics seem a sensible treatment option given my circumstances? Should I seek a second opinion? Does anything else stand out?
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