'Surgery isn't an option for you'

[Ronald]

What does this mean?

I have panenteric CD (gastric, duodenum, terminal ileum, colon including rectum, known fistulising perianal disease) according to the letter I received from my GI, so my assumption was that it's perhaps in too many areas of the bowel, therefore no single section of it can be removed in order to improve my symptoms?

What concerns me most about this is that I can't tolerate thiopurines, so that is one route of treatment ruled out. Antibodies eventually build up against TNF blockers without the use of Imuran/6MP - SO if all forms of medication failed, what would happen next?

I did ask about this on the FB CCUK forum a while back, but was just told not to worry. I'm not worried, but I'd like to know a bit more about how we qualify for surgery and why and when somebody wouldn't be eligible for it.

Thank you in advance!

Lewis

 

[Jay Woodman]

@Lewis ..How about methotrexate as an alternative to the thiopurines to help with the antibodies? My GI has prescribed Methotrexate with Remicade.

 

[Ronald]

@Lewis ..How about methotrexate as an alternative to the thiopurines to help with the antibodies? My GI has prescribed Methotrexate with Remicade.

See, MTX really scares me. Well, the side effects. How are you feeling on it?

Do you take it orally or via syringe?

 

[my little penguin]

DS takes Mtx orally with humira
No issues other than mouth ulcers which were fixed once we upped the folic acid.
Surgery doesn't tend to fix crohn's - it does come back and if too many areas are damaged they just can't fix it all.
My son is similar and basically has it end to end .

Is the humira working ?

 

[Jay Woodman]

@Lewis ..I've been afraid of all the drugs but now it's decision making time...I'm on the Methotrexate + Remicade plan : ) Methotrexate scared me as well. I started them last week with the low dose regimen of 5x2.5 = 12.5, once weekly tablet form. I took them on a Monday night around 10:00 p.m. just before bed..I made sure I had a simple protein starch dinner & took the pills with water....I had a good nights sleep & woke up in the morning with a hot green tea & had a good day...

 

[Ronald]

Thank you both! When I see my GI on Wednesday I'm sure we'll go over some of the options. I may give low-dose 6MP I try before MTX.

Humira is working well, so this is why I really don't want it to stop working. I've finally managed to get down to 5mg of pred without symptoms returning. It just sucks that I need combination therapy because humira alone isn't causing me any adverse side effects, if any at all. If I could feel like I do now, forever, I'd be very happy! I just know that immunosuppressants make me feel like crap...:thumbdown:

 

[syzygy]

I'm guessing that it is the "too many sections of the bowel" rationale for why surgery isn't an option. My GI had been saying that surgery was likely in my future, but backed off that when an updated MRI showed a new inflammation higher up in the GI tract (previously only in terminal ileum). It might also have to do with the location and how easy the surgery would be to do. I'm just starting on the road of anti-TNFs, but have heard some hopeful stories of people who have been on them 10 years or more. One medical grand rounds podcast I listened to said that the antibodies are specific to each anti-TNF, so resistance to Humira wouldn't convey resistance to Remicade or others. Hopefully, there will also be new treatments coming down the pike for us all that will give new options as well. Best of luck.

 

[DustyKat]

Have you tried Thiopurines with Allopurinol?

If it works, this combination allows for a dose reduction in Thiopurines down to 25% of the original dose. It is used for those that have difficulty tolerating normal doses of Imuran/6MP.

Re the surgery, yes, it would be that your Crohn’s is present in far too many areas to make surgery a viable option.

Dusty. xxx

 

[Ronald]

I haven't, BUT I did read somewhere that allupurinol inhibits the drug somehow. I'll bring that up to my GI. I actually would like to give thiopurpines another chance because I literally got off them after 3 days, just because I got itchy. The fact I have very low TPMT scared me though and I thought I was having a bad reaction.

 

[DustyKat]

That’s perfectly understandable that you would be wary of it.

Low TPMT activity is an indicator for combined therapy with Allopurinol.

Allopurinol inhibits the enzyme that breaks down the thiopurines and so increases its efficacy.

Dusty. xxx

 

[Ronald]

Wait, so inhibiting that enzyme further probably wouldn't be a good idea for me? Since I have low levels already, it would make it even more likely to cause a negative reaction right?

 

[sk12383]

Has Entyvio been approved in the UK? I just started it and I find it to be more effective than the TNF inhibitors.

 

[DustyKat]

Wait, so inhibiting that enzyme further probably wouldn't be a good idea for me? Since I have low levels already, it would make it even more likely to cause a negative reaction right?

No, because the dose of Thiopurine taken would be greatly reduced. Say for example a ‘normal’ dose for someone like you was 100mg, add Allopurinol and the dose drops back to 25mg. So you would be taking 75% less thiopurine.

 

[Ronald]

Oh I see! I'll mention it to him then. Entyvio is in trials sk12383, I would love to try it though, since it works more locally rather than affecting the whole body. For some reason my GI doesn't like the idea of me having infusions because it will interfere with my work - I don't have a job...lol.

 

[Ribo]

I'm guessing that it is the "too many sections of the bowel" rationale for why surgery isn't an option. My GI had been saying that surgery was likely in my future, but backed off that when an updated MRI showed a new inflammation higher up in the GI tract (previously only in terminal ileum). It might also have to do with the location and how easy the surgery would be to do. I'm just starting on the road of anti-TNFs, but have heard some hopeful stories of people who have been on them 10 years or more. One medical grand rounds podcast I listened to said that the antibodies are specific to each anti-TNF, so resistance to Humira wouldn't convey resistance to Remicade or others. Hopefully, there will also be new treatments coming down the pike for us all that will give new options as well. Best of luck.

One other thing to keep in mind - some GIs will work to treat medically way beyond the point of reasonableness. Did you also consult a colo-rectal surgeon for their opinion? Or another GI?

All of last year I bounced in and out of the hospital, and tried just about every medication available. I was in the hospital (admitted that is) 15 times in around 18 months for CD or complications thereof (twice with pneumonia as a result of my immunosuppressants) - my longest stays were three weeks.

When I finally consulted with a CR Surgeon (actually with two, one at the Mayo Clinic and one locally) they both had the same response: my treatment plan to this point had been crazy. The one I wound up working with basically said "why on earth would you be admitted with this many obstructions and not at least have a CR consult?" I didn't have an answer for that one.

I had a resection in June and my CD appears to be in remission. Unfortunately I've had two SBO's in the past month, but both the surgeon and my NEW GI suspect a mechanical issue this time - specifically, mesh used in a previous hernia repair - but that's another story.

Surgery may not be the answer for your situation, but I strongly advocate getting multiple opinions now. I just wish I had done so sooner.