Remicade increase or surgery

[Mugs5]

Long story short -diagnosed at age of 12 in 1983. Resection in 1997. Remission (for the most part) for 10 years until 2007. Started Remicade in Nov. 2009 which worked great until May 2011. Another 7 days in the hospital with a stricture in July 2011 and hit with high amounts of different steroids and antibiotics. I was told I will need another resection but its a matter of when during follow up doctor appointment after leaving the hospital. Doc was anxious to see what happened after I weaned off the steroids. As of 6 weeks ago I was finished with the steroids and last week I went into full blown Crohns attack. You know the routine, laying on bathroom floor moaning and growning in pain trying to keep vomit from getting in your hair and on your glasses, praying it would just END. For the first time in nearly 30 years I actually had very small amounts of blood in my vomit. Told hubby I needed to go to hospital but since it was 12:30in the morning and we have a young one we didn't know what to do. I'd been suffering for 6 solid hours and had taken several pain pills with literally zero results. I very rarely take those pills (cant stand them) so for me to take several is a big deal. Took a phenergan only to see it come back up. That was a first also, Phenergan always works for me.
OK, so now my dilema... hubby does not want me to get cut up for another surgery. He is fighting it with everything he has. During July the surgeon wanted to do the resection (and so did I) but my husband fought it. Hubby is convinced I just need remicade dosage increased and frequency increased. I've got an appt with my doctor on Friday. But now my pain is gone... which usually happens when I don't eat at all which means nothing blocking me up. I feel crazy going into the doctor when not in pain (at the moment) and asking for help asap. I seriously doubt I've written this to be an easy read. Hopefully someone can understand my intent and has time to respond with advice.

 

[chrisnsteph1022]

So your doc wants a resection, YOU want a resection and you're considering not doing it because your hubby doesn't want it? What is his reasoning? It's YOUR body and you have to make the decisions that are best for you. I know recovery can be tough on the caretaker, but he needs to suck it up. Sorry if I'm misunderstanding.

Also, if the stricture is caused by scar tissue, remicade isn't going to help. And next time you're vomiting blood at midnight, call an ambulance! I have little ones at home, too, so we've discussed what we would do if I needed to get to the ER. During the day, I'd call my mom to watch the kids while hubby took me. Middle of the night, I'd call an ambulance.

 

[Mugs5]

Oh Stephanie thank you so much for being blunt. Caused me to tear up. I have no idea what is causing the stricture. What I DO know is it is significantly worse exactly one week after day one of my period. I've had one BM in 6 days. Hubby said it would get better since having Remicade last Thursday... that inflammation will go down and I will be fine again. That my Remicade dosage needs increased and I need to go more often. Now I'm scared my doctor will repeat the same thing and I will feel like I am CRAZY!.. even though he said 8 weeks ago that I will be needing surgery.

 

[xJillx]

Hi Megan! I agree with Steph - if you and your GI want surgery, then surgery it is! Your hubby shouldn't be fighting you on this. That extra stress is the last thing you need.

However, to play devil's advocate, have you and your GI discussed increasing your Remicade or trying a different treatment plan all together? The only reason I ask is because usually all treatment options should be tried before surgery.

Regardless of surgery or an adjustment to your medication, I sure hope you start to feel better soon!

 

[Mugs5]

Hi Jill. Thank you for taking time out of your day to respond. I encourage people to play the devils advocate. It's the only way I will be able to see all my options. Honestly, we have not disgussed increasing Remicade. During my last hospital stay I was literally just hours away from surgery when all of the steroids and antibiotics kicked in. Surgery cancelled in hopes it wasn't needed. I went to the doctor for a follow up appx 2 weeks later and he said surgery was in my future, there was no avoiding it but it was just a matter of when. He said he really wanted to see what happened when I was weaned off of the steroids. What I failed to mention in my original post is that I've been off of the steroids for 6 weeks but 4 1/2 of those weeks I've been juicing 2-4 meals per day. I've been drinking most of my meals... only eating solids 1 - 2 times per day with no beef, zero milk, and very little chicken. I started eating more solid foods about 7 days before I was in a full blown flare.

 

[xJillx]

Well, if you GI thinks it is only a matter of time, then why prolong it. Hopefully, you'll get great relief (and for many, many years) from the procedure - so why wait?!

I wish you all the best, Megan!

 

[Jessi]

Welcome to the forum, Megan.

I haven't had surgery, so take this with a grain of salt... I've heard people say that if you know you are going to need surgery eventually, it's a really good idea to do it when you are more healthy. It makes recovery a lot easier. So if you're considering doing it, try to do it while you're well. Easier said than done, right? We never know when we're gonna feel good.

This is a mighty big decision. Good luck and keep us posted. :hug:

 

[Mugs5]

Jess thank you for sharing about the surgery. That is a very good point!! My pain is less than it was last week and since I'm barely eating I hope it's calming down in there. If doc says a surgery is a go then hopefully it will be easier on my body.