Running out of Pain Management options -advice?

I'm struggling also. You are unique you have quite a plateful of conditions. Know your not alone.

Thanks so much for the info Suzie, good to hear from someone who has experience with them. I guess anytime the word "spinal" is used in the same context as surgery it conjures up fear. I think for me it is a mental barrier also as it really is the last resort meaning I have nothing left to fall back on, and that is a scary thought when I could conceivably have 30 years ahead to try and manage my pain.
I am concious that it really may be the only realistic option available and that I am really grasping at straws here but thought (hoped) maybe there was some new or innovative approach that I wasn't aware of.
Really good to hear that it's not a big deal though. That eases my mind about the surgery side of it for sure.
Thanks again.
L

Unfortunately rectally is out as due to (& sorry, I will try and make this as sanitised as I can) the short bowel syndrome leaves me with my bathroom visits being up to 15 times a day and pretty much liquid (think what happens when you have food poisoning and that's about where thinks are at!) so anything administered rectally would just get flushed out too quickly.

Hi Lily and welcome to HW and the CP forum, I hope you have posted as well in the crohns forum as there's many there that suffer from the same issues with absorption and they may have a few ideas we may not know about.

I think Susie has had her pump at least a decade and we have others that have them, yes its a last resort but its also a lasting solution so I would try to look at it that way. The placement is quick and outpatient for most barring any complications which are rare. With absorption issues such as yours and the bowel habits present your options are so limited as to delivery of medication into your system.

Roc gave you the scoop on flonase and I had heard from some folks I know still working that this is something they were doing with all forms of transdermal patch reactions. I suppose giving it a try, nothing really to lose. Especially if you had good Pain control with Fent but I might add at the dose you were on you were about to top out anyway so still were going to be at this point of looking at alternatives.

Could you get approved for actiq? It may be better than the sub q delivery and even with Roc having the ability to access her port for med delivery and it being better than the invasiveness of sub q delivery as far as bacteria risk that risk is greater the longer these methods are used.

I like the pump option for people like you with deteriorating illnesses because it gives you so much more control over your pain then say your CP counterparts who use oral meds. The PCA feature is a wonderful add on to the system although some Drs opt out of using it I'm guessing yours wouldn't. You would have the added support of the Tech with the pump and these folks are mostly great, they know their stuff, they've seen most all problems and have quick fixes, always are on call for a patient. Tech support with Medtronic is one of the best support from a medical standpoint I ever had the opportunity to utilize in 30 yrs working.

I know we don't seem to be coming up with many answers but simply repeating what you already know and its possible you have the answer before you and hearing how well it works for others may help in reassuring you some.

Glad you joined and just having support of others who understand is priceless.

I second Roccyd's suggestion to explore Palliative Care.

I, too, receive Palliative Care. It is an integrated approach to medical care for individuals who have serious/life-threatening medical conditions.

I have a laundry-list of medical conditions, most endocrine and auto-immune based (Addison's Disease; mixed-connective tissue disorder; permanent ileostomy due to extensive intestinal perforation; avascular necrosis of both hips; pan-hypopituitary (complete pituitary failure; et. al) and receive Palliative Care on an on-going basis. My medical MDs and ancillary clinicians (physical therapists, nutritionists) all communicate and coordinate my care through my Palliative Care MD. It is designed with an eye toward symptom management with the end-goal retaining quality of life to whatever degree possible. Many times, the Palliative Care team comes to my home. The Palliative Care team includes an MD (with specialized education on chronic disease management), a social worker, a psychologist, a chaplain, an art therapist, and a physical therapist. They also work with my family on processing their emotional response to my fragile health and research available social services (ex. respite care).

I find the Palliative Care experience to be warm and comforting. I do not have to exhaust my limited physical/emotional resources trying to explain my needs to my MDs/medical team. They "get it" - they understand the nuts-and-bolts reality of living with chronic illness. Their sole focus is on meeting my needs, whatever they may be in the moment. What a refreshing approach. Sometimes I just need the compassionate ear of the visiting chaplain or the resources of the social worker to fast track a needed appointment for a CT scan. I bless their services.

I recommend anyone with a serious/chronic illness to explore Palliative Care. It is not something to be afraid of.
- Karen -

Hi Lily,

I also had the same localized severe hypersensitivity reaction to the adhesive in the fentanyl patches (years later, I still have scars from some of the welts/blisters), as well as the adhesive in butrans patches (I warned my doc about the major issues I had with the patch adhesives, but he didn't listen & still insisted that I try them anyway...what a mess), so I can totally relate there. I tried the flonase trick, like roccky mentioned, when my doc put me on the butrans patches. The skin reaction was not quite as bad as with the fentanyl patches (and no flonase), but by the end of the week it was still pretty much unbearable. And it still took a couple weeks for my skin to return to normal after I removed the patch (vs. up to a couple months with the fentanyl patches).

If the intranasal ketamine works well for you for BT pain, have you and your doctor ever discussed IV ketamine infusions? Depending on the protocol/facility, they are either done outpatient (in a doctor's office equipped with an infusion suite or hospital/outpatient infusion clinic) or inpatient over several days & then repeated as needed (as often as every couple weeks initially, then ideally stretched out to every few months). I don't know anything about your disease, but ketamine infusions are most commonly used to treat treatment-resistant neuropathic pain and central sensitization, but they have been used to treat other types of refractory pain as well.

I started getting the ketamine infusions at the end of this past summer for my CRPS, and they've made a HUGE difference for me both in terms of my pain levels, fatigue, and quality of life. At the moment I go for 2 days of outpatient infusions (4 hrs/day) at my doctor's office once a month, but after January, we are going to try to stretch it out to 2-3 days every 2-3 mo (which I guess is the average length of time that the effects of the infusions tend to last). The infusions work way better for me than any opioid or other type of pain medication that I have ever been on. And as a bonus, they also help my depression a lot, too. Since starting the infusions, I've been able to get off all of the medications that I was on before the infusions (both opioids and antidepressants). The infusions are definitely tough physically, but I can't say enough good things about the results that I've gotten.

The only other medications that I take now are intranasal ketamine for BT pain (also tried sublingual ketamine, but the intranasal seems to work better for me) and low dose naltrexone ("LDN"). LDN has been another life saver for me, and is also something you might want to look into. It is used not only to treat neuropathic pain, neurogenic inflammation, and central sensitization, but some of the most significant research done on LDN has been in patients with Crohn's disease, MS, and other autoimmune diseases. And there is also some evidence that it can help with hypothyroidism from autoimmune thyroiditis (also pertinent in my case). Most mainstream doctors (at least here in the USA) don't know much if anything at all about LDN, so I am fortunate that my PM/anesthesiologist is very familiar/experienced with it. The only downside is that for some people it can take up to 6 mo to work (not the case with me -- and I think the majority of people -- although, I do think that it is helping more the longer I have been on it -- 4 mo now), and you have to be off all opioids before starting LDN, or at least take the two medications hours apart, because naltrexone is an opioid antagonist, and even at low levels it can theoretically cause withdrawals in patients taking opioids.

If you are interested, you can read more about LDN here: www.lowdosenaltrexone.org
And for a more scientific overview about how it works for chronic pain, see: www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Hope you are able to find something that helps.

Skeye

Hi Lily,

That stinks about the access issues. It is a problem here, too. The use of ketamine for the treatment of chronic pain is still pretty new here as well, and it is still considered experimental, or extra-label by the FDA. The infusions are only done by probably a few handfuls of doctors in the whole country, and intranasal and sublingual ketamine for BT pain are apparently prescribed by even fewer docs because besides being considered experimental, it is something that has to be compounded (as with the LDN, too) & most docs just don't know about it or how to prescribe it. Although with ketamine (both IV and intranasal) now also being used experimentally to treat treatment-resistant depression, it is becoming perhaps a little more common now. But still, I have to travel 2 states over to see my PM/get my infusions. And it was not easy to find someone willing to take my on as a patient in the first place. Because there are so few docs who do these infusions, some have over a year wait list, not to mention that depending on the facility, they can be very expensive due to the intensive monitoring involved. And many insurance companies do not cover the cost of the infusions because they are considered experimental. I was just very fortunate to have found an excellent, very experienced, very knowledgeable doctor, who thinks outside of the box, and to have insurance that covers the majority of the cost of my infusions, such that they are affordable.

Anyways, I hope that you are able to find something that helps. I feel for you. I also didn't have any luck with any of the other meds for neuropathic pain -- or really any meds at all, before those that I am on now. It essentially took me 9 yrs of countless failed medication trials and many doctors to finally find something that works well for me. All I can say is don't give up. Medicine is always evolving, and there is always hope.

Skeye