What to do...

[meganmila]

I don't know if I want to do surgery or not. I've been thinking about it all weekend. I've just been released from the hospital and have the option to take all these meds or surgery. I'm on Preds now ( ohh fun!) and it is awful and antibiotics and doing Remicade. I thought Remicade was the strongest drug you can take for Crohn's? Or am I wrong? I've been on it since 2009 and has worked really well and recently the past couple of months I switched it to 6 weeks and it seemed to work really well and I thought I was gonna be in remission for a while...but nope! I really thought it was gonna work...but I guess I was wrong. So if remicade is not working what else do I do? They keep saying surgery is last resort but I keep reading people having better lives after surgery and can function better. It's probably these Preds messing with me right now cause I don't want to be on it...it's torture.

I dunno where to post this kind of topic so I posted it in here. I'm just wondering if ya'll were in my shoes would you all do the surgery? I have had Crohn's since 2000 and been on all the meds and came close to surgery before but I was a little kid so they didn't want to do it. Now, it's like, I'm older maybe I should do it. I know it doesn't cure it but if it made me in remission for a looong time I would love it.

I'm rambly right now. So if anyone has any advice it's welcome.

 

[nogutsnoglory]

I think surgery should be your last resort. Once they open you up you never know how much they cut and how your life will be after. If Remicade isn't working you could try other options like Humira or Cimzia. They are likely as effective as Remicade.

 

[afidz]

Have they tested you to see if you are building immunitites against Remicade? That could be the reason you aren't doing as well on it right now. Like NGNG said, Humira and Cimzia are good options as well. Maybe try those and see how it goes first?

 

[meganmila]

I always thought Humira and all those infusion drugs were the same thing..My doctor talked about my body building immunity over remicade. Which I guess that's not good.

 

[nogutsnoglory]

They are all in a class of medications called biologics and are anti-TNF. Many people who don't respond or develop antibodies to one of the drugs find they do well on another. I know it seems counterintuitive because its the same drug but the molecular make up is different in each.

 

[carlysy]

Unless you can't stand your quality of life and you have tried all the different drug options (maybe even get a second opinion from a different specialist) I would have surgery as a last option. I had surgery 2 months ago but I HAD to have it, I had 10cm of severely scarred and damaged intestine that could no longer be healed with drugs. The recover process is long and not pleasant and it can have permanent effects on your body (BM may never return to normal i.e. D for the rest of your life, may have permanent problems absorbing certain nutrients and there are risks of surgical complications). I wouldn't go into the surgery lightly, I know you're struggling and I really feel for you but just remember this surgery isn't a cure. All the best

 

[alex_chris]

I have been diagnosed with Crohn's in 1999, so had it about as long as you. I had surgery in 2003 to remove two strictures. That was partially a last resort. I was worried about a potential blockage and emergency surgery and I was just not doing well - the surgeon actually wanted me to wait and go for better long term drug treatment, my GI said I better go for surgery because it won't get better. The strictures and scaring was worse than they initially thought when they did the surgery, about 60cm was removed.

In any event, I would only go for elective surgery if there is a heavy risk that you end up with emergency surgery otherwise.

In the 14 years of my Crohn's, I have been in "quasi" remission for years on time, but actually only in the last 14-15 months I have been in deep remission (no symptoms at all). But that required hard work, being rigorous when it comes to what I eat, not gettinge stressed out in any situation and doing regular endurance sport and vitamin therapy plus getting my iron levels back to where they should be.

Regarding remicade, yes, it's a strong drug, but even it only works for about half the people who take it and just going for remicade without having a good long term management in place apart from drugs won't work either.

In any event, I would not recommend surgery except if it is really, really necessary.

 

[UnXmas]

It's hard because no one can know what the outcome of either surgery or meds will be. In theory, doctors should be able to give ideas about whether a particular individual is a good candidate for surgery, although that isn't always the case.

I don't think surgery is necessarily a bad thing. I've had several surgeries for a few different problems, and don't find the actual process and recovery from surgery all that terrible. I'd actually far rather have another surgery than go back on prednisone! It is a lot to go through if you find it doesn't help though, and I think surgery's usually regarded as a last result because it usually carries more risks than medications tend to do.

So while I prefer surgery to some meds in terms of how I feel recovering from surgery versus being on steroids, it probably would be more dangerous for you to undergo surgery. Though again, it depends on your individual circumstances - for example, would it be a minor surgery for something that's easily corrected? Are there other options you could try? Do you suffer many side effects from meds? Do you have other health problems that make it risky for you to undergo surgery? Etc. etc.

I know that's a lot of questions to consider, and it still comes down to the fact that you don't know what the outcome of either course of treatment will be, but sometimes thinking about questions like these can help you come to a decision about which forms of treatment you're most comfortable with.

 

[Scaryman]

Have they tested you to see if you are building immunitites against Remicade? That could be the reason you aren't doing as well on it right now. Like NGNG said, Humira and Cimzia are good options as well. Maybe try those and see how it goes first?

Afidz I think they'd know if she was building antibodies to remicade with infusion reactions..no ??

 

[Dukeis]

Afidz I think they'd know if she was building antibodies to remicade with infusion reactions..no ??

I built the antibodies to it and it just stopped working. No reaction at all.

 

[Dukeis]

In 2002 I was given the choice between surgery and Remicade. I went with the Remicade and it worked great for 7 years. Then I developed histoplasmosis and had to stop it. When they restarted the Remicade it worked great the first infusion then failed the second because the test showed I had developed the antibodies to it. Then I was put on Humira which worked great. I had a total proctocolectomy in March not because the meds failed, but because I had dysplasia in my colon and never wanted to take the chance of it becoming Cancer. If it weren't for that I would have road the meds as far as they would have took me before turning to surgery as a treatment.

 

[meganmila]

So, I'm having the surgery a week from now. It seems like from what he said it's only a little bit being taken out but I dunno. I'm kind of excited then kind of not. Of course, I'm gonna be all worried for a whole week. I just hope this gets me in remission and if it doesn't i dunno what else there is to do.

So there's that, I decided to do it.

 

[carlysy]

Brave girl meganmila. Don't worry we all get scared before surgery (I was petrified and cried when I got put under, embarrassing!) I really hope everything works out for you and this surgery gives you a much better quality of life

 

[meganmila]

So, two more days...and I'm scared as usual. I know I will be all panicky and probably crying while waiting in that room...I'm just wondering if they would give me something so I don't remember going in and being calm.

I guess if anyone can give me advice and support that would be great. And I may update after I dunno.

carlysy thank you! That's probably what I do start crying haha. I do that every time I get put under.

 

[Scaryman]

My surgery is a heddle on the 24th. For some reason I'm not scared or worried. I thought about it after friends brought it up. The only reason I can think of Is because I'm going to one of the best hospitals and best surgeons, and world renowned gastro team. I keep telling myself it has to happen in order to move on with my life. Not sure that'll be helpful.

 

[PsychoJane]

If you want some success story that comes from surgery my first lead me to a 10 years remission and now I've had the second last year and I've just hit the 1 year remission recently and keep going (hopefully for a while again!).

Good luck!

 

[meganmila]

Well, wish me luck! I dunno if I'll update or not...depends on how I feel.

 

[meganmila]

Update: he took out about 13 inches of small intestine and a little of colon. I haven't got that much pain except for on and off, I got a dilaudid pump, dunno if it's working that much, I mean, not in huge pain but sometimes get sharp pain and I can push it every like 15 mins. They took out the catheter today and I walked today which maybe this sharp pain is gas pains. I haven't passed gas yet but burped a bit. It is hard to walk but you gotta do it. They upped the dosage of pred, ugh! So I'm not liking this but say ween off it quicker. I'm starving but know I can't just eat a chicken sand which hah. I'm sure I'm gonna be taking supplements? Do you talk to your gi about that? Im guessing full recovery in like 6 weeks? I know everyone is different. Ahh. I'm all doped my eyes keep shutting haha so this might be all not making sense heh

 

[Traumanurse]

Glad you're doing well Megan. Been reading your story, and I wish you the best. You'll feel better even by the time you go home. Walk as much as you can while in the hospital. It will help you not to get the gas pains as the bowel "wakes up".

Take it easy, but increase your activity a little bit every day when you get home between rest. You will heal just fine, and I wish you well!

 

[meganmila]

So, this recovery is not the best ever. I want to do stuff but can't like drive. I'm walking better but still can't walk straight. The incision site was burning and really hurting but that went awayy. Moving around was REALLY difficult, a little better now, still afraid to move the wrong way tho. I have been having anxiety on and off...could it be the pred and painkillers? I dunno if painkillers can cause anxiety or not. My moods have been up and down. Emotionally nothing is fun. It's been 9 days post op so I know it's very early and I know some have said it takes 2 weeks before they feel somewhat normal. Waiting is difficult for me...and time ughhh.

I'm trying to get through it and think positive. Lets hope I can.

 

[UnXmas]

So, this recovery is not the best ever. I want to do stuff but can't like drive. I'm walking better but still can't walk straight. The incision site was burning and really hurting but that went awayy. Moving around was REALLY difficult, a little better now, still afraid to move the wrong way tho. I have been having anxiety on and off...could it be the pred and painkillers? I dunno if painkillers can cause anxiety or not. My moods have been up and down. Emotionally nothing is fun. It's been 9 days post op so I know it's very early and I know some have said it takes 2 weeks before they feel somewhat normal. Waiting is difficult for me...and time ughhh.

I'm trying to get through it and think positive. Lets hope I can.

Hey, yes prednisone can make you really anxious. When I was on it, I worried over everything, and I'd get this sense that something terrible was going to happen, but it was abstract - I didn't really know what this thing would be, just that something was going to go horribly wrong. I usually felt this in the evenings for some reason. My GP put me on anti-anxiety meds, and meds to help me sleep (prednisone causes insomnia), which worked like magic for me. I don't think I would have lasted my course of prednisone without them!

Pain killers I'm not so sure about the one you're on. Codeine wakes me up, even though it's not a stimulant, but it always relaxes me as well. Morphine makes me high and uninhibited. Don't underestimate the effects any meds can have on your mood, but remember you will return to normal once you're off them.

It does take a while to get over surgery. My recoveries have always been linear, even if it was going so slowly at times. The one time I realised I was feeling worse, not better, it turned out I had an infection. So as long as you're feeling better week by week, you're ok, even if it's only a little better.

If either the moods or pain are really causing you problems, do talk to your doctors about medication adjustments. Sometimes there's a bit of trial and error involved to make you as comfortable as possible.

 

[meganmila]

Yes, I think it's the pred. I'm down to 10 and weening off. I also have that dreadful feeling that everything is wrong. I have sleeping pills so that's good. I'm on Norco which kind of wakes me up but also drowsy. I've been on it for a week. I don't think you have to ween off of that. This paper says ween off of painkillers? I've never heard of that. Of course I'm worried about all of that. Ugh. Thanks tho. I know it's only been 10 days.

 

[meganmila]

So, my Bms are up and down. Sometimes I have solid sometimes I have loose. Sometimes I go once a day sometimes I go 3 times a day. I dunno when I should worry but I had green loose stools last night and this morning. I just went to the doc yesterday and all of a sudden I'm having this issue. How long does it take for the bowls to go back to normal or is this forever? Pre surgery I went like every other day with solids now it's completely different...having to go every morning and sometimes it's solid and sometimes not. I do have a huge appetite, I'm just scared to eat certain foods. Would Imodium work or do I have to get something prescribed? It's unpredictable really cause I don't know if this will last...the next day I might have solids. It's been almost 4 weeks post op so it might be still too early to tell I dunno.

I got 20cm out and the docs all said that I'm not in danger of needing B 12 or anything but he did give me Folic acid. Is that an iron pill?

I'm just mostly worrying about the Bm's and wondering is this is gonna be normal for me forever or is this temp? I'm wondering if I should mention this to the surgeon on Friday..

 

[nogutsnoglory]

My bowel movements have only been diarrhea after surgery. Before it was solid. The fact that you have both makes me inclined to believe you may make full recovery. It can take weeks after surgery for your body to make a full recovery. It could be you need a little help in the diet area by eating things that constipate.

 

[meganmila]

Well 6 weeks and I still sometimes have loose stool and then it goes to sort of solid. Like this morning I got kind of a solid poo then about 30 mins ago loose one. There was one day I didn't go at all. So I dunno. I still sometimes get the urgent feeling but it has lessened. Mostly when I fart it goes away. Is it true it takes 6 months for everything to settle down? I was reading 6 weeks to 8 weeks, but maybe that is just recovery from surgery or something not with your bowls. I'm confused.

And yes I guess I will eat more bananas or anything else that will plug me up. I hope I do recover like you said just I guess it's still early.