Surgery or Medication?

[SarahLou]

Following a series of horrific side-effects caused by taking Imuran, my GI has taken me off it and given me time to recover but now wants me to make a decision as to next steps. The options on offer are Humira, Remicade or Surgery. I would really love to do nothing and just continue taking Pentasa but my GI has made it clear I'm risking an obstruction if I procrastinate.

My side -effects of the Imuran were extreme and very scary and so I'm naturally reluctant to either inject or infuse additional drugs into my body but surgery doesn't sound too appealing either.

Does anyone have any advice for me? Experience with any of the drugs, good and bad, to help me make my decision?

Many thanks in advance

 

[theOcean]

Well, Remicade and Humira are both pretty different from Imuran. They're antibodies as opposed to immunosuppressants, and Humira is the one that's least likely to give you bad reactions.

I've been on both, but I've had allergy problems with biologics -- but Humira has really worked well for me, and I've had friends who've been on Remicade who had really good results with it too.

 

[SarahLou]

Well, Remicade and Humira are both pretty different from Imuran. They're antibodies as opposed to immunosuppressants, and Humira is the one that's least likely to give you bad reactions.

I've been on both, but I've had allergy problems with biologics -- but Humira has really worked well for me, and I've had friends who've been on Remicade who had really good results with it too.

Good to know that they're very different though when I read the potential side-effects they seemed to be the same which is what made me nervous. For whatever reason, my body doesn't do well with medications but I'm worried about the surgery too, thinking that it maybe needs to be a last resort and I'm not there yet.

Thanks for your response, much appreciated

 

[worriedboy]

Sarah,

Have you done scopes recently ? If so, what did they show?

If you would say that there is much of scar tissue that will not
respond to medications then ... well maybe then sugery is the
besy bet (when the scar is very significant, every little inflammation
added to it can cause symptoms... no "spare").

However, if this is not the case, then I'd say why not take the
other route before surgery ? Try and fight the inflammtion in
any way possible - medication changes, diets, alternative medicine,
yoga.... whatever possible.

If this won't show the expected results, then you can turn to surgery
anyway, cant you ?


Hope you feel well soon.

 

[SarahLou]

Sarah,

Have you done scopes recently ? If so, what did they show?

If you would say that there is much of scar tissue that will not
respond to medications then ... well maybe then sugery is the
besy bet (when the scar is very significant, every little inflammation
added to it can cause symptoms... no "spare").

However, if this is not the case, then I'd say why not take the
other route before surgery ? Try and fight the inflammtion in
any way possible - medication changes, diets, alternative medicine,
yoga.... whatever possible.

If this won't show the expected results, then you can turn to surgery
anyway, cant you ?


Hope you feel well soon.

I've had a colonoscopy and barium meal recently and both showed severe inflammation although I know that scar tissue is present also. I'm scared of the medications as I seem to always experience horrible side-effects. I had to stop taking Imuran after a series of problems, the worst when it caused my throat and tongue to swell up.

I'm a very active person (runner) and am interested in holistic approaches though my Dr doesn't agree. Is this something you have knowledge of?

Sarah

 

[Astra]

Hiya SarahLou

I had the same decisions to make, I decided to come off all meds including Humira, nothing was working, all I did was make myself more sick with side effects etc. Meds are fab, but they eventually stopped working for me after so many years on them.
I sat down with my gastro and surgeon, they made me realise that no med would penetrate the scar tissue that was narrowing my bowel and causing so much pain, the only option was to cut it all out.
Different story if yours is inflammation tho, there are other alternatives, I tried them all. Over time the inflammation turns into scar tissue after each major attack, in my opinion.
Here I am, 4 weeks post op and I feel ok, not amazing yet but getting there.
All my Crohn's symptoms disappeared too, such as joint pain, high blood pressure, spasms and diarrhea.
Btw, I've had an obstruction, you really don't want to go through that ordeal, believe me!
Good luck with whatever you decide xxx

 

[SarahLou]

Hiya SarahLou

I had the same decisions to make, I decided to come off all meds including Humira, nothing was working, all I did was make myself more sick with side effects etc. Meds are fab, but they eventually stopped working for me after so many years on them.
I sat down with my gastro and surgeon, they made me realise that no med would penetrate the scar tissue that was narrowing my bowel and causing so much pain, the only option was to cut it all out.
Different story if yours is inflammation tho, there are other alternatives, I tried them all. Over time the inflammation turns into scar tissue after each major attack, in my opinion.
Here I am, 4 weeks post op and I feel ok, not amazing yet but getting there.
All my Crohn's symptoms disappeared too, such as joint pain, high blood pressure, spasms and diarrhea.
Btw, I've had an obstruction, you really don't want to go through that ordeal, believe me!
Good luck with whatever you decide xxx

Oh wow, sounds like you've had a rough ride too; I'm so sorry to hear that. I just seem incapable of making a decision but think I'll meet with a surgeon to get answers to some questions that my GI wasn't able to answer. If I'm honest, I'm almost procrastinating in the hopes that I magically get better, crazy I know!

Many thanks for sharing your experience Astra, much appreciated I hope you recover from the surgery quickly. I'd love to hear how your recovery goes (one question my GI was unable to answer was about recovery times following surgery). I have 3 kids and though I'm British I live in America so don't have any family support other than my hubby who is obviously at work a lot xx

 

[SarahLou]

Astra, sorry one other question; what Meds are they putting you on post-op? My GI talks about still needing Humira or something else after surgery but that seems to make the surgery redundant to me? The only med I seem able to tolerate is Pentasa but he's adamant it's not strong enough for me anymore xx

 

[jlm]

Every surgery I've had was required. I didn't have an option. My first surgery happened very young i was having a crazy amount of bleeding so OP 1 was done. OP 2 was done to get rid of the scar tissue so i could start remicade. OP 3 was a resection to get rid of some nastiness from ops 1 and 2. And finally OP number 4 happened 1 week ago to remove a pyloric Stricturecaused from ulcers that healed. There was technically a 5th surgery that happened the day after the 1st, but that's practically the same they had to fix some leaking. And after OP 3 I developed a Nasty fistula that took 6 months to close

During this whole time i was on some kind of drugs. Humira, remicade, Imuran, Budesinide, prednisone, tried everything I could. Remicade was the best , 8 years of remission.

If it was me and I was dealing with a situation where drugs could clean it up I'd probably go drugs. I'm also someone who would take a maintenence med after surgery to prevent anything from coming back. I'm having this conversation currently with my GI whether or not I should start stelara in a few weeks or just stay off meds and see what happens. I've never really been non medicated and look where that's gotten me.

 

[SarahLou]

Every surgery I've had was required. I didn't have an option. My first surgery happened very young i was having a crazy amount of bleeding so OP 1 was done. OP 2 was done to get rid of the scar tissue so i could start remicade. OP 3 was a resection to get rid of some nastiness from ops 1 and 2. And finally OP number 4 happened 1 week ago to remove a pyloric Stricturecaused from ulcers that healed. There was technically a 5th surgery that happened the day after the 1st, but that's practically the same they had to fix some leaking. And after OP 3 I developed a Nasty fistula that took 6 months to close

During this whole time i was on some kind of drugs. Humira, remicade, Imuran, Budesinide, prednisone, tried everything I could. Remicade was the best , 8 years of remission.

If it was me and I was dealing with a situation where drugs could clean it up I'd probably go drugs. I'm also someone who would take a maintenence med after surgery to prevent anything from coming back. I'm having this conversation currently with my GI whether or not I should start stelara in a few weeks or just stay off meds and see what happens. I've never really been non medicated and look where that's gotten me.

Jenna, thanks so much for sharing your story with me and I appreciate the advice to stick with Meds you've had a truly horrendous time and I hope you start to feel better soon. What's been your experience of surgery recovery times? How active are you able to be and how soon?

Very best wishes for a speedy recovery from your latest surgery xx

 

[Astra]

Hiya SarahLou

I'm not sure what maintainence meds I'm going to be on, I only see the gastros in April. I have thought about going back on Humira, dunno.
I was on Pentasa for 8 years but it didn't work after a while cos of the scar tissue but it kept my attacks away for a few years. My problems started to escalate after an obstruction and infection 4 years ago, long story!
After surgery it was very hard once I got home from hospital, my advice would be for hubby to take a week off to help you, it's really hard, moving is difficult, you're very tired and sleep a lot.
The second week I was able to do things for myself, my boyf went back to work and my kids went back to Uni.
4 weeks post op I'm driving again and nearly normal!
Chat to your surgeon SarahLou, and find out exactly what op he intends to do, recovery will depend on it being lap or open etc.
Mine was a right hemicolectomy, they took a portion of the small bowel and all my ascending colon. It was done lap and my scar has fully healed.
xx

 

[SarahLou]

Thanks Astra xx

 

[Jim86]

Hi SarahLou, speaking from my own experience, Remicade put me in remission for at least 10 years. It's a very powerful drug I never had any adverse reactions to it. I'd follow your Dr's advice though and make some kind of decision before too long, you don't want the disease to get worse if the Pentasa isn't strong enough anymore. I couldn't afford my Remicade for about 6-8 months and lost about 70 lbs during that time! Not worth it!

Good luck no matter what route you choose! - Jim

 

[SarahLou]

Thanks Jim,

I wish I could say I'm closer to a decision but I'm still procrastinating! The hardest thing is knowing I feel ok right now and how sick the Imuran made me and risking being there again. I appreciate your advice though, many thanks

10 years remission is fantastic!

Sarah xx

 

[jlm]

Everyone heals differently. I remember this being much easier when I was kid. My last surgery was 2 year ago and that one was a bit rough. I tried to get back to life to quickly and developed a fistula at my incision that look a long time to heal. This time around things are very slow moving. The pain is the easy part I believe. It's a hard decision to make at the end of the day it's what are trying to accomplish. If it's scar tissue related illness then surgery is your option. If it's inflammation the biologic could help. Or do both and hopefully stay in remission for a long time.

 

[SarahLou]

Thanks JLM,

I really appreciate everyone sharing stories to help me make my decision xx