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Surgeon is managing my pain until I'm fit for surgery.

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Posted 8/6/2013 2:50 AM (GMT 0)
Hi all - I have Crohn's Disease and have not really taken pain medication in the past for this with the exception of as needed Tramadol during a flare. Well I have flared massively lately and am not responding to medication changes and all my doctors say I need surgery. My colo-rectal surgeon is not comfortable with surgery as I stand now - my nutrition levels are too low and there is too much inflammation. SO I am currently getting TPN to increase nutrition and doing a prednisone taper to help with inflammation. She has also put me OxyContin 2x per day and Percocet up to 8/day as needed. These meds scare me because I will need to go off them after the surgery! I am so scared of dealing with withdrawal on top of recovering from surgery. The nurse that comes to my home says just take it and worry about the taper once you're feeling better. I do feel I need almost the maximum allowed amount of meds to be comfortable.

Do you feel it is appropriate for pain management before surgery? Will a slow taper following surgery be noticeable? And will I get adequate pain relief right after surgery if I develop a tolerance while waiting for surgery to take place?

Thank you for any advice!
Posted 8/6/2013 3:30 AM (GMT 0)
Hello.Hate to hear that you're heading for surgery but hope it makes things better.Pain medicine is for the relief from pain.It sounds like you need it at present.Get the relief you deserve.Your Doctor can taper you off.The fact that you want to quit taking them when you're able tells me that you'll be able to.

Good luck and God Bless,
Rick
Posted 8/6/2013 6:02 AM (GMT 0)
Hello Myrne! So sorry that you are having to go through this, but at least there is a plan in place and hopefully the surgery will give you some long-term relief. As for the pain medication, just follow your doc's instructions and you will be fine. After the surgery and initial recovery period, they will taper you off of the pain meds. How long are they estimating, until your surgery? From what you describe, it doesn't sound like it will be too long. I don't think tolerance is going to be an issue for you, especially if the surgery is in the next couple of months. I'm sure they will help you manage your pain after surgery - but don't be afraid to speak up if they don't! Either way, don't worry about what's going to happen after your operation - just take care of yourself now.

What mg. is the Oxycontin? Is the Percocet the 5/325mg? Here's a couple of suggestions. Don't let the pain get too bad before you take your b/t med, it works better that way - instead of 'chasing' the pain, you want to stay a step ahead of it. Doing it this way, you will usually take/require less medication. Also, you know that your max b/t dose is 8/day - aim for less whenever you can. The goal is to always try and take the least amount of medication to keep you comfortable. Hope this helps a bit. Hope you are feeling better soon!

Have a peaceful day.
Posted 8/6/2013 1:26 PM (GMT 0)
Thank you so much! I am feeling more comfortable just hearing from you two! The OxyContin is 10 mg and I have been taking that every 12 hours. I can definitely feel it wearing off around 8 hours, but just rough it out for a few more hours. That seems to take the edge off and then I will usually take 2 5mg percocets when I start cramping up and get more noticeable pain (usually after eating). This routine is keeping me out of the hospital but I am still often uncomfortable and really hoping surgery is the fix! Thank you agin for your input.
Posted 8/6/2013 11:46 PM (GMT 0)
Another thing I forgot to mention is that my insurance does not want to pay for the Oxycontin but would rather me start on Fentanyl or extended morphine?  Aren't those stronger?  I would rather not jump to something too strong considering I am not going to be on these drugs long.  We just paid the full price this month and may just do the same for another month, but I guess it's something to discuss further with my surgeon.
Posted 8/7/2013 5:24 PM (GMT 0)
Hi Myrne, so sorry to hear that you are feeling so poorly. I know we always hate the thought of surgery but in your case hopefully you will feel so much better after surgery. I am assuming that you are going to have a small bowel resection. I had to have an emergency small bowel resection because of an abscess and flew home 6 days after surgery.

I would not worry about coming off of the oxycontin. Tolerance to meds usually happens after long term use. Fentanyl is stronger but it comes in a 12.5mcg, 25mcg and up. A lot of the people here are on both of these meds. I really doubt you will be on pain meds very long after your surgery too, so you should not be worrying about this. Your Percocet is given for what they call break through pain, this is because of pain spikes and your Percocet should only be taken when this happens. Yes, it is real common the extended release meds only last 8 hours instead of 12.

Keep us posted on how you are doing...Susie
Posted 8/7/2013 5:59 PM (GMT 0)
Is that a type-o, 8 perc's per day? Aren't you close to exceeding the daily Acetaminophen limit? The max I believe is 3000MG's and if your Perc's are 325MG x 8 that's 2600MG's. Don't know how long you'll be taking these meds for but that's a lot to me. You'll def be in withdrawl as your taking what most take in 2-5 days in 1 day.
Posted 8/7/2013 7:22 PM (GMT 0)
The are several people on here that are prescribed fentnyl.You're on a pretty low dose of oxycontin right now at 10 mg.I would want to take what gives me the most relief.I don't like pain.Stomach pain,to me,is the worst.I'm totally out of action if my stomach hurts.

I understand your trepidation because these medicines are fairly strong narcotics.But they serve a very important purpose.Your situation requires them I would think.No need to suffer.

Have a great day,
Rick
Posted 8/7/2013 7:26 PM (GMT 0)
Thank you for your input! Straydog - I will be getting a small bowel resection (hopefully only about 1 foot) and I also have some strictures that will be opened via strictureplasty. I have about a foot of small intestine that is majorly inflamed and only responding to high doses of prednisone (which is driving me insane!!). The real pain I think is the strictures as food cannot pass through without gut-wrenching pain. I am confident these procedures will help with all of this! Did you find your procedure successful?

8 Oxycodone a day does seem excessive. That is the max dose the prescription allows. I think I was taking about 6/day initially (2 5mg about 3 times per day), but have noticed that I haven't needed any today yet. Maybe it is the Oxcontin building up (does that need to happen?) or the prednisone kicking in more. Either way, my pain is less and my appetite/mood is out of control. I will be tapering the pred soon in preparation for the surgery, just hope it doesn't increase the pain.

Thanks again for you advice!!
Posted 8/7/2013 8:04 PM (GMT 0)
Hi Myrne! Yes, Fentanyl is a strong medication but like Straydog said, the available dosages start at 12.5mcg. It's not recommended for short-term or 'acute' use. As for the Morphine, I personally don't like it - pain relief is minimal, it's constipating, and it upsets my stomach. However, many people (including HW members) find that it works great, with minimal side effects. So it's really about what works for you. If your insurance won't cover the Oxycontin and it's too hard on your budget, I would definitely consider the Morphine ER. As for the Percocet, the amount prescribed to you is not excessive. Even at 8 tabs/day, you are still under the max. of 3,000mg of acetaminophen. The FDA has ruled that 2,600mg is what the liver (main concern) can safely process each day. I took that exact amount for a very long time, with no adverse effects. And even IF you take the max amount per day that your doctor has prescribed, of both the Oxycontin and the Percocet, that puts you at 60mg of oxycodone and that is also not excessive.

So just take the least amount of the b/t med that you need to get comfortable - you may even find after a few days, that the Oxycontin covers a good part of the pain! Have a peaceful day.....

Post Edited (Splashdancer) : 8/7/2013 2:07:56 PM (GMT-6)

Posted 8/8/2013 8:20 PM (GMT 0)
I completely agree with Splashdancer. I also want to add that before the guidelines were changed, and 4,000mgs was the RDA, many many people stuck to THAT reference with no problems. It all comes down to overall health and how many sources of acetaminophen you use.
Posted 8/8/2013 8:37 PM (GMT 0)
Currently, my docs have told me not to exceed 4 grams/day, including all sources. So I do a lot of math as I will alternate Percocet and Tylenol and occasionally I take fioricet. Sooooo, it adds up quickly. Thus my love affair with my ice pads.

Sookie
Posted 8/15/2013 3:33 AM (GMT 0)
Hi All - Just an update. I met with my surgeon Monday. My nutrition levels are improving, but still not where they need to be. I have been having trouble staying hydrated, which I think is due to my prednisone taper, but either way I have now had to add IV fluids to my picc line, which is annoying because it's just more time I'm tethered to an IV pole.

I am currently down to 35mg prednisone and will most like attempt to go down to 30 by Friday. I really want to get down as low as possible for surgery to ensure a successful surgery. My surgeon is not confident I will get off the pred for surgery and therefore does not think she will be able to do it laproscopically. I have communicated that my pain increases with every decrease in pred, so she says just increase my pain meds as needed, as we can focus on tapering those after surgery. This pain management is stressful! I start to feel ok and try to wean down a little on the breakthrough meds, but then find if my pain gets too high and a 10 mg Percocet doesn't even help that much. My pain is always at its worst in the morning, I think when the oxycontin wears off and I'm due for another. I am SOOOO ready for this surgery and some relief. It really makes me feel for those who do not have other forms of relief to look forward to.

Sookie - I find a lot of relief in my heating pad, but was advised to cool it with that for surgery as it may burn the skin? I have been using it "Sparingly". I also love hot baths for relief but haven't had one of those lately due to my picc line.

I also talked to my surgeon about the acetaminophen and she too wasn't worried at all. She offered to just prescribe oxycodone without the acetaminophen, but thought that the acetaminophen was actually helpful in the overall pain relief. She was impressed I wasn't taking the full 8/day as prescribed, so that lessened my fear of taking "too much".
Posted 8/15/2013 6:50 AM (GMT 0)
Your surgeon sounds like a smart lady!

I'm glad you feel better about what you're taking...sometimes we create undo stress for ourselves and that can end up making the pain worse too!

I know I personally feel a lot better when my doc tells me I'm on the right track and that she's happy with where I am in terms of how much meds I take.

If you end up switching to Fentanyl or extended release morphine, the doses would be adjusted according to what you need.

The meds themselves aren't necessarily "stronger" persay they're just different. For example, the Fentanyl patches are usually worn for 2 or 3 days each, so although the medication is technically stronger, that fact is offset by how long you wear each patch. The morphine is more comparable to the Oxycontin, because it's taken every 8-12 hours as well. I believe the lowest dose is 15mgs, and even though that's 5 more mgs, my guess is it would just mean you wouldn't find yourself needing as many percocet. :)

I've been on all three, I started with the morphine, then switched to the Fentanyl, then switched to Oxycontin, and each transition was smooth and the doses were adjusted as needed, but I was able to start on the lowest dose each med had to offer and then was able to increase if/as needed.

Post Edited (LexiRae) : 8/15/2013 12:53:51 AM (GMT-6)

Posted 8/15/2013 7:43 PM (GMT 0)
Myrne, they could not do my surgery by lap either. In fact when I went to ER they thought it was my appendix so they took them out only to find them fine. The surgeon opened me up lower and that is when he found the big mess. Both surgeries were open and I was in surgery a little over 4 hours. Keep in mind this happened out of the country in an area that did not have all of the modern equipment that we have here in the states. But, I had an excellent surgeon that took great care of me, never had a bit of pain, never once had to ask for any pain meds it was brought automatically. Nine days later I was on a plane home and feel certain the reason I was able travel is because I had excellent care while in the hospital. The recovery time was about 6 weeks, the best thing to do is get up walking as soon as you are able. You need to get up moving around to wake up your bowels.

Stick with easy on the gut foods for awhile too. I ate a lot of chicken & rice for a long time because of severe diarrhea. Also depending on where in the bowel they do the surgery you can end up with absorption problems this happened with me.

When is your surgery scheduled? I was off all pain meds when I left the hospital. Good luck...Susie
Posted 8/18/2013 5:11 AM (GMT 0)
Oh my gosh Straydog - Were you on vacation or something when you needed surgery?? My fear is ending up back in the hospital and needing the surgery emergently. Last night was a bad night for some reason and I couldn't get my pain under control (I feared an obstruction), but I finally got some relief around 3am and today has been much better. I am thinking about sticking to liquids for the next few days and just relying on the TPN for most of my nutritional needs. My surgery has not been scheduled yet because my overall Albumin levels are too low for "elective" surgery (I quote this because this surgery is my ultimate LAST choice in Crohn's treatment and I have put it off for about a year, but now cannot find a doctor anywhere that isn't recommending it, sigh) and we really need to get my dosage of prednisone down. I am now down to 30 mg and will taper again to 25 on Tuesday. This is a fairly aggressive taper (which is making my GI nervous), but my eye is on the prize - successful surgery. So far I haven't noticed an increase in my inflammation from the taper (although I'm still on a high dose of pred), but some other nasty side effects like joint pain and fever.

So anyway, to answer your question, surgery hasn't been scheduled definitely, but the goal is the middle of September. My end goal is to return to work the week after Thanksgiving and off all pain medications. Then ideally try for baby #2 by that summer, but now I'm getting way ahead of myself, lol . . .

Thank you again everyone for your input. I am used to dealing with the Crohn's, but being put on additional medications and awaiting a major surgery is new to me. They all tell me I am very sick, but I am having trouble grasping and accepting that and therefore having difficulty accepting that I need strong medications for pain or that I need to take time off from work just to wait for a surgery. I am trying to stay positive and remind myself that this is just a temporary struggle and I appreciate all your kind words and support!
Posted 8/18/2013 4:46 PM (GMT 0)
Hi Myrne. I'm so sorry that you're having so much pain. I'd try not to worry too much now about your taper, but I think it will be key for your doctor to taper your slowly. I'd be open and honest with him. If you feel like he's moving you down too quickly, let him know. That said, there are other medications that he can give you to help to make it easier, like clonidine (I think that's what it's called).

Hugs,

Flower
Posted 8/29/2013 7:35 PM (GMT 0)
Thank you Flower!  My surgery has finally been scheduled!!  September 11th.  I am sooo nervous about the surgery, but very happy to be moving forward.  My protein levels are still low, but I have gained a lot of weight.  I am not completely sold on this TPN - I feel like it's just making me fat and I just got a call from my surgeon's office saying they wanted to increase it from 12 hours to 16 hours in order to get me some additional fluids, as I've been getting dehydrated easily.  I haven't returned the call yet - putting off the inevitable (I just don't know if I can stomach the idea of carrying that bag around for an additional 4 hours.  I'm being a baby I know). 

I am down to 20mg on the prednisone and will taper down to 15mg again tomorrow.  My surgeon doesn't think I will get down past 15mg for the surgery - But I am going to try.  My pain this week has been pretty bad and I have stayed on mainly liquids and eggs all week.  At my appointment Monday my DR increased the Percocet from 10mg every 4 hours to 15mg every 4 hours.  This has helped some, but I find I really need to keep on top of the pain or the pills are not as effective or take a lot longer to kick in.  I am still taking the 10mg OxyContin every 12 hours.  Surprisingly, I woke up at 3am this morning and felt a lot better than I have in a while - and this was after going to bed last night feeling really horrible.  I hooked up to some extra fluids before bed, so maybe that was the reason, but in any case I have been having a much better day today with a lot less pain - even cleaned the downstairs and did a load of laundry, hubby will be impressed.  I am scared to take less pain meds, but have not taken my usual afternoon dose of breakthrough meds, we will see what happens . . .

The surgery will be done open, so I guess the recovery is substantial.  Surgeon says to plan on being in the hospital for 10 days, but could be less if I am doing well.  My husband is going to try to take a week off once I get out of the hospital to help me at home, but he has used up all of his vacation from my previous hospital stays and is relying on his company's sick bank (this has yet to be approved).  If he can't get time off (I really don't know if we can afford unpaid time off right now given that I have been off work for over a month now) my mom said she would take a week or 2 off to help.  My son is at daycare Mon-Thur and my parents and in-laws will help care for him when needed.  We will try to keep his schedule as normal as possible. 

Surgeon says not to plan on returning to work until Christmas time!  I am REALLY hoping I can go back sooner.  What am I going to do with myself?  Just being home the month of August has driven me crazy.  I also feel guilt that I am missing out on my time with my son.  I have managed to make "special time" with him - I get up with him most mornings (as long as it's not a "bad morning") and get him dressed and then we get back in bed for about an hour and eat breakfast and watch cartoons.  We go for a walk to the playground or park (with my husband), bathe, and watch a movie at night once he gets back from daycare.  But I still feel like I am missing out.  My mom brings him to daycare every morning (something I always did before work) and my husband picks him up, so I don't get to talk to his teachers and see how he's doing or what he did that day.  I used to have Fridays off and we would have the day together, now I'm lucky if I feel well enough to join him and my husband at the lake or pool on weekends when they go.  Fridays this summer he has spent the day at my in-laws.  We are blessed to have such a supportive family and my son loves his grandparents and spending time with them, I just wonder how this is effecting him.  I'm sorry - this has turned into a sob fest/pitty party.  Just wanted  to update on the surgery and my progress.  Thank you all for your support!

Posted 8/30/2013 1:41 AM (GMT 0)
Hey Myrne, glad to see they have your surgery scheduled. You will feel so much better after getting it done. However, one thing I will caution you on is this getting dehydrated, you are throwing your body & system into chaos when this happens. The electrolytes get out of balance and its just not good having all of this happening. So, do whatever the dr has asked.You really need to have yourself as healthy as possible for this surgery, I am talking before the surgery. Weight gain happens too you know being on steroids so do not let this be a concern, it will come off after the steroids get out of your system.

Yes, we were on vacation in Mexico when I got sick. We has rented a villa with three other couples 90 miles out of Cancun in a small town called Akumal. It is known for deep sea diving. I got sick the 2nd day there and went down hill rather quickly. I completely missed the vacation in the new villa we had rented,it was beautiful. Of course, I messed up hubby's time there too. The company that handles the property offered the villa to us for a huge reduced rate for an extra week, but by that time all we could think of was getting me home to the drs here.

Keep us posted....Susie

It sounds like your son is being very well cared for and his schedule has not been turned upside down. Kids are so adaptive even at a young age. I doubt very seriously this has any bearing on him at all. I think you are the one feeling guilty and I don't know why, its not like this is something you can control. You are still getting time with him every day and sounds like you are making the most of the time spent with him. So, stop kicking yourself it will all be fine.

I think if all goes well which I have no doubt it will, just take the recovery a day at a time. You may very well be able to return to work a lot sooner than the dr said. I was back at work in 6 weeks or so. The dr may be saying this for now just to cover himself. Was it the surgeon that told you this? The important thing is to follow the drs instructions to a letter when you get home from the hospital. How you take care of yourself determines your recovery time.

Keep us posted.
Posted 8/30/2013 3:59 AM (GMT 0)
Thanks Susie - Getting sick while on vacation is the worst. Do you have IBD?  We were up in the Adirondacks for a whopping 12 hours in July before driving back home (about 3 hours) and being admitted to the hospital for the second time this summer. Left my son behind, as we were there with my in-laws, it was a horrible feeling. Both my husband and I were in tears - more so out of frustration from the disease and my health, but also the upheaval it has had over out lives.

Yes, it was the surgeon that estimated my recovery.  I agree - she is lying out worst-case scenario.  She says 10 days in hospital, 3 months before work, 6-12 months before I feel 100%.  Granted, I am a somewhat complex case as my Crohn's is considered severe and there is a lot going on in there right now, but I am confident all will go well.  I know you are right about staying hydrated and will be doing the TPN for 16 hours starting Monday.  I am also anticipating some weight loss following the surgery, so hopefully the weight I have been gaining can counteract that a bit.

We vacationed in Soliman Bay this past Christmas which I think is about 20 miles south of Akumal (I was able to make it through that vacation). I loved it there. Hope you were/are able to return again and have a fabulous time.

Post Edited (Myrne) : 8/29/2013 10:12:31 PM (GMT-6)

Posted 8/30/2013 3:16 PM (GMT 0)
Myrne so glad you will take care of the dehydration problem. The healthier you are when you have your surgery the easier your surgery will be. I think your dr is really trying to cover the bases. Yes, I have crohns and then in 2005 had another scope was also dx'd with UC. My gastro was just floored, he said I would never in a million years ever thought you would also get UC. Even though the flares are a lot alike there is a difference. When I got sick in 2005 I knew there was something different going on, just did not know what. I just knew it was different from my usual flare ups. My gastro says its something like 5% or 7% of this happening, he said only you, lol. I have a wonderful gastro.

Will keep following along with you and will also check on the crohns forum while you are in the hospital.

Susie
Posted 8/30/2013 3:35 PM (GMT 0)
Make sure they take a pre-op and post-op MRSA test. I got MRSA during my neck surgery and I'll have it forever. When it flares up (when immune is down) it causes migraines and blotches on my nose. One more thing I have to deal with. Got to stay an extra 5 days in the hospital then a few months later an emergency surgery to have the MRSA cyst removed from my right sinus.

Make a big deal about the MRSA and how you've read horror stories about getting this during surgeries. Maybe they will be extra careful with you because you mentioned it.

I'm still pissed years later. I have to tell people at Doctor visits, ER, etc. that I have MRSA. I usually get my own room (only benefit).
Posted 10/16/2013 9:01 PM (GMT 0)
Just wanted to drop in and update. My surgery was a success but much more involved than originally expected. They had to remove a lot of small bowel, which is causing some issues at the moment (frequency and cramping), but everyone says I just need to give it time for my body to get used to the change. I am 5 weeks post-op and feel a little better every week. My energy levels are still low, but I have been resting often. Hoping to get back to work part-time at the beginning of November.

I have been tapering my pain medication and prednisone simultaneously, which has been a little difficult because a drop in the prednisone has been causing major body aches. I am holding at 10mg prednisone until I restart my Crohn's meds, so hopefully the aches will go away soon. I am at about 60mg oxy/day now, stopped the OxyContin as soon as I got home from the hospital, so that is about half of what I was taking in the hospital. My goal is to drop 15mg/week, which has been doable, but some days are very hard because I am still in some pain. Does this seem like it's too fast? My surgeon is really just letting me set my own pace and she basically gives me what I need according to my own taper plan (I did share with her the plan and she thought 15mg/week was good, even said I could try faster if I was feeling up to it). My main goal is to get off of the pain meds all together, but if I continue to need them for a few more months to keep it to about 5-10mg at night before bed. I am hoping I continue to feel better and don't need any so we can try for another baby by summer. Should I still expect some discomfort on this taper? So far I haven't noticed much withdrawal other than maybe my stomach pain increases (but that can be due to surgery). Thanks for you input! Every time I try to look this stuff up online it is all about addicts trying to wean off massive doses of opiates after years and years of abuse, and that really doesn't relate to my situation (I hope!). Thanks again!
Posted 10/17/2013 12:57 AM (GMT 0)
Hi Myrne and am glad your surgery seems to be a success! The best rule when tapering is always slow and easy so you dont "shock " your system. If the 15 is comfortable that's what I would stick to. Dont be pushed into going faster then your comfortable with.

One of the 1st symptoms that your body's withdrawing too fast will be stomach cramping and diarrhea, you at 5 weeks bowel resect dont need either of those problems. If you find that you drop 5mgs and that causes issues then drop 2.5 mgs instead.

Drink plenty! Stay hydrated and good luck!
Posted 10/21/2013 7:22 PM (GMT 0)
Thanks for the advise Vickie! I am at 45mg this week. I definitely feel some withdrawal with my drops, but they are bearable. What do you think a reasonable dosage to just stop at is? Do I need to taper all the way down the like 2.5mg or can I stop at like 15mg? Will withdrawal be that bad given that I have tapered down and only used the meds for about 3 months? Getting off these meds is the final stage of my recovery, ad has been stressing me out! I feel like my doctors really don't have much information for me. My GI and surgeon both just say take it slow, but really, what does that mean?!
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