Treatment Options After Surgery

[JLW]

Hi everyone... I'm a 27 year old female I just had 45cm of small intestine removed along with a small piece of colon, my appendix and a golf ball sized abscess. I was taking cimzia, 6MP and Pentasa (along with failed attempts of prednisone) prior to my surgery. It's been about a month since the surgery and I am left with the decision (doc said its up to me) to go on meds immediately or wait.
Does anyone has some insight for me... should I start right away or wait a little while?? AND should I go back to cimzia or try something else like remicade?
I am concerned the cimzia failed me after being on it for 2 years before. I am really confused as to what to do now. I want to stay healthy for as long as possible. Before the surgery I was completely miserable and never want to go back to that. Any input from some of you that already went through this would help greatly.

Thanks so much!

 

[Grant]

Hi JLW. I've found in the past this is a can of worms TBH. Because with me after my last two surgeries I've not been put on anything specific apart from calcichew & pentasa which I've been on for years. And each time the disease has come roaring back within 2mths.
I'm having an ultrasound on Thurs to decide if more surgery is required & I've insisted on something post surgery if it happens. That something is Humira & i've been given the go ahead to continue fortnightly right the way through the process.
Its your decision obviously but quite a few people flare quickly after surgery. I've been stung twice & won't make the same mistake again.
Hope this helps
Grant

 

[JLW]

Thanks so much Grant this really does help. I had been leaning toward going for the meds right away and this pushed me in that direction. Sometimes the doctors just don't know enough and it's hard to make these decisions. Good luck with your ultrasound I hope things get better for you.
Jenna

 

[DustyKat]

Hi Jenna,

Both of my children have had the same surgery as you and were commenced on maintenance medication immediately.

My daughter was undiagnosed until emergency surgery so was on nothing prior, post operatively she was commenced on Imuran. When my son was diagnosed he was commenced on Imuran but quickly developed a fistula and abscess. He remained on the Imuran until surgery and continued with it post operatively.

My daughter has been in remission since her surgery in July 2006 and my son has been in remission since surgery in April last year.

Good luck!

Dusty. xxx

 

[JLW]

Dusty - About how long after the surgery did it take for your kids to start feeling "normal" again? I'm about a month out and still having discomfort and I'm exhausted.

Thanks for all your input I really appreciate it.
Jenna

 

[DustyKat]

My daughter was very ill going into surgery, a combination of being undiagnosed for 18 months and a ruptured bowel. Her recovery took quite a while and I didn't expect her to feel 100% for up to 6 months post op and I think that was accurate. Having said that I think she was probably feeling about 80% by 6 weeks post op.

Although my son had a difficult pre op period it was easier than Sarah's and he really turned a corner at week 4 post op. When he reached this point he was able to move freely, without pain, and psychologically things improved significantly.

Just on the exhaustion side of things, have you had your B12 levels done lately? Maybe you need to move them up to monthly or weekly. Also if you haven't had levels done for Iron Stores, Folate and Vitamin D I would have those done as well.

HTH!
Dusty. xxx

 

[JLW]

Dusty
Did they experience any nausea? I have been so nauseous all weekend. It doesn't make a difference if I eat or don't eat I feel just as bad.
Got my blood work done and the B12 was good but they said my inflammation levels were elevated and liver function is high. I'm a little upset by this news. Not feeling great today.

Jenna

 

[DustyKat]

Hey Jenna,

I don't remember them having any issues like that at that point post operatively. I think their appetite may have waxed and waned a little for while but I don't recall it being related to nausea.

Did they say anything about your bloods, why they think they are elevated? Perhaps the way you are feeling reflects what the bloods are showing?

Dusty. xxx

 

[Feather]

After surgery, my doctor had a number of treatment options. Either 6-MP, methotrexate, Humira/Remicade paired with methotrexate or 6-MP, or a polymeric (liquid) diet. He also considered putting me on flagyl, which he said helps prevent relapse post-op. We ultimately decided that I would just go on 6-MP and save the biologics for later when I need them more. I guess it really depends on how aggressive your disease is. You said that your inflammation levels were elevated; are you scheduled for a post-op colonoscopy at any point? Bloodwork and other tests can help determine how active your disease is and what sort of treatment plan you should choose.

 

[archie]

Hi JLW is it possible u might have another abscess? Those are the symptoms I had with one? It took me about 5 weeks to feel normal
After surgery but tbh I progressively got better from day 1, if I were you I'd get checked over by your consultant. My inflammatory markers stayed raised for a while post surgery but I think that's normal but my liver function was only impaired when I had the abscess and slight perforation. I hope u get checked out. To answer ur other question I'm not on any meds post surgery as my GI took the wait and see approach, I wouldn't recommend it as your disease could be totally different to me. It's a personal choice and I would take something if symptoms return.

 

[DustyKat]

He also considered putting me on flagyl, which he said helps prevent relapse post-op.

I forgot mention that Matt was put on this regime post op for the same reason.

He was Flagyl (400mg x3 daily) for 3 months pre op due to a fistula and abscess and then the Crohn's specialist continued it (200mg x3 daily) for 3 months post op as he said research indicated that it helped to gain and maintain a longer remission.

Dusty. xxx