Question re: Relapse after NON-IBD surgeries

[SDcrohnie]

Hi, Everyone-

I'm a newbie here, so I'm not sure if I'm posting in the right forum. I'm not a newbie in terms of IBD. I was dx'd with Crohn's when I was 9, back in
1979. I somehow made it through my childhood and adolescence. I was on pred for most of 7 years from 14-21, and then imuran from 24-31/32. Since then, I've mainly managed by watching what I eat and using colazal.

The issue is, over time, I've developed other chronic illnesses--some secondary to IBD, some completely separate and just bad luck. That's where my question finally comes in.

I was run over by a car about 5 years ago and my wonderful body developed something called Reflex Sympathetic Dystrophy, a chronic pain condition. I've been successfully treated with lumbar blocks, but insurance no longer wants to pay. Instead, they want me to undergo surgery to implant a spinal cord stimulator (SCS). There's 1 case study in the lit of someone with IBD getting an SCS and flaring; there's another case of someone with IBS getting a stimulator and doing better. One of the docs I've asked (a surgeon, not a gi doc), said that my chances of a flare after SCS surgery were "no more than for any other non-IBD surgery." So, that's my question. How frequent are flares after non-IBD surgeries? I'm not even sure how to look for that info or who to ask, so I figured I'd come here. :smile:

Thanks for any help you can give me!

 

[Miss Underestimated]

Wow! I think I'd ask the doc about an appeal.

 

[SDcrohnie]

Thanks!

I am actually appealing the insurance decision, but I teach so I need to do the surgery this summer. So, I've got a surgery date. I'm just hoping it won't happen. Unfortunately, I've realized that I can't go through another school year without some effective treatment. But, I also know it'll be really hard to teach if my IBD starts to flare severely, so that's one of my biggest issues.

Thanks for replying!

 

[Miss Underestimated]

I hope you get a decision soon! Good luck.

 

[David]

Hi SDcrohnie and welcome to the forum!

This is going to sound weird, but when was the last time you had your vitamin B12 levels tested? And when you had them tested, what were they? I mean no disrespect by asking this and AM hearing what you're saying and asking.

With that said, I haven't seen any anecdotes that stuck in my brain about surgeries causing flares and I read a LOT of anecdotes on a day to day basis.

All my best to you

 

[Miss Underestimated]

I was thinking about having something implanted when you have autoimmune issues. Seems to me it's inviting trouble. Not that I know much about it in reality, but that would be the question I'd ask first.

 

[SDcrohnie]

Vitamin B-12

Hi, David-

Thanks for asking. I'm actually not sure about my B-12. My Vitamin D is in the toilet--no pun intended. I'm due to see my GP in May, so I'll make sure he checks my B-12, too.

I'm glad you haven't heard anecdotes! I just don't know enough people with IBD anymore to really have a sense of what goes on with the other non-IBD stuff that happens to us as we age.

Thanks for responding!

PS When I post replies, does it just go at the end of the thread, or am I just not noticing the button to publicly reply to a specific individual? Thanks!

 

[SDcrohnie]

Hi, Miss Understimated-

Yeah, I'm really concerned about the healing process and my immune system going nuts again. I spent 7 years on imuran and don't want another 7 years of that. (Although, it's better than 7 years of pred!!!!)

Thanks!

 

[David]

When you hit the "Post Reply" it does indeed go at the end of the thread which is a great way to get our attention and have a conversation like this. If you need to talk to someone privately, you can click on their username and then select, "Send a private message".

I asked about the vitamin B12 for a specific reason. I pray you don't get upset but as I was reading about your RSD my thought was, "Wow, a lot of these symptoms sounds exactly like vitamin B12 deficiency". As people with Crohn's Disease are very commonly deficient in B12, especially if they have active disease in the terminal ileum and it would be such a tragedy if they attributed it to your car accident rather than the actual underlying cause. It's a really good idea for people with Crohn's Disease to get their B12 levels tested on occasion so why not be totally sure?

You mention your vitamin D deficiency, are you supplementing for that?

 

[SDcrohnie]

Vitamin B-12

David-

Thanks!

No, I'm glad you looked at an RSD website. I'll definitely check it out at my next appointment. Yeah, my endocrinologist has me on prescription Vitamin D--50,000 IU/once a week. Turns out, Vitamin D plays a role in pain, so some of my docs see it as a Crohnie deficiency and some see it as an RSD deficiency. Some chronic pain patients have been told to take 5,000-10,000 IU daily and more if they have a bad pain day.

The one nice thing about having long-term IBD is it's easy to tell whether you've found a good doc in other specialties as things add on over time. If they look at you blankly and you have to describe IBD, or if they get IBD and IBS confused, you know they won't be much help. If they ask you the questions they should--have you had a bone density test for osteoporosis, etc., you know you've found someone solid. If they ask you about secondary conditions you've never heard of, you've found a doc worth their weight in gold!

Right now, I don't have much gold, but I also haven't needed it for a while.

Well, I better log-off for the day. Thanks again!