My c-scope results and hip injections...

Scope results for general biopsies are unremarkable. Architectural changes from decades ago have returned to normal as of the past 3 scopes. Didn't realise it was a possibility, but my GI explained...since my flares are extremely mild and I'm on top of it regarding treatment, the 5ASA has been doing its thing over the 33 years of use. Because I don't let the inflammation get to a prolonged more advanced state, it doesn't continue to change the cellular structures and has had time to heal. He reminded me that if I were to go off the meds, I would be back to square one and worse.

I asked, joking but serious, if he was going to give me to another GI because Im not a complicated patient...he laughed and said "no, because if I did...that GI would probably not believe I had UC". So we are good, and he continues to rx with lots of refills for me to use at my discretion. I'm grateful.

Regarding the polyps...2 in the hepatic flexure. One was inflammatory (4mm), and the other was was tubular adenoma negative for high-grade dysplasia (7mm). I wonder, but didn't ask because I hadn't seen the report yet, does this mean it might have been positive for low or mid-grade dysplasia???

The steroid hip shots were guided and into the hip joint through the groin... one week apart. Left one initially because it was the worst pain-wise...I felt improvement over the first 3 days, but on the 4th day I turned/twisted wrong, and now the muscles around the hip are locking more and very painful, and the throbbing of varying areas in my leg is atrocious. Soooo, I suppose it means most of my issues aren't joint. The right hip is good at this point. Both doctors who did the shots commented that my hips arent bad at all. Go figure...but worth the "shot" to find out if it would help.

I went to the chiro on Thursday, and he was soooo not happy I got the shots. Desperation is extremely misunderstood. I asked him once again what he thought was exactly going on...he said he couldnt explain without imaging of the area since my complaints are numerous. (I've seen him for 29 years!!!) I repeated I have x-rays, but have countlessly begged for CT or MRI of hips for soft tissue for other possibilities...no doc would comply. Only for my lower back...which I have obvious life-long issues confirmed as per CT. I'm hoping the soon to be back MRI will go low enough and encompass my hips as well. The mental energy of my brain on constant pain and disappointment is overwhelming, and certainly not helpful for my depression. TENS and cold packs and Robaxacet and Robaxin, Celebrex, LDN and CBD and the specific exercises seem somewhat helpful. I'm nowhere in the realm of pain I experienced with my right hip last summer (physio made it worse)...again, Im grateful.

Anyhoo...those are my results. The saga continues....I'm mentally and emotionally exhausted 😩 after 6 years of this BS.

q

Could still be a joint issue..nothing you have posted rules that out......steroid injections fail at 40% rate even in good cases....MRI and CT scan likely will not clear this up and will only show wear and tear and make overall diagnosis more difficult....you do have IBD so are a candidate for IBD arthritis issues in the hip, back and SI joints....that coupled with your Sjorgens which tends to produce a lot of muscle and joint issues of a non-descript form....these can be quite erosive though

Something to stay on top of and something you will have to manage....maybe consider counselling if depression is affected....wish you well with it

Quincy, thanks for the update.

Re: the hip and low back pain, have you looked into pain reprocessing theory? Last month I read the book The Way Out, and I’m intrigued (as one who has suffered awful neck pain and now evidently SI pain, along with arthritic degeneration to joints pretty uncommon for a 38-y.o. Waiting on a rheumatology appt and told it may be six months).

I CANNOT TOLERATE being told pain is “all in my head” or that I’m a “high-strung” woman of a certain sort. But the theory of neuroplastic pain—that the brain gets stuck in pain/unconscious fear and can be at least partially retrained—is growing scientific momentum.

I know some of my pain is structural and inflammatory, and I would suspect plenty of yours is too, but I’m hopeful at the hypothesis that there could be interventions to lessen SOME of the more neuroplastic pain since there are so few pain management options accessible for folks with UC. Maybe check out the book? The intervention is a self-guided practice of bringing neutral awareness to the pain sensations and then reminding oneself that one is safe, which sounds woo-woo to me but has some excellent evidence to back it up.

And I’m so happy to hear that the years of careful UC treatment have resulted in some healing!

Thanks Sara 😁

GH..😁 thankfully, I've never been told it's in my head. I will check out the book you suggested. I understand the pain memory aspect, and on the days it's different or I have those nice throbbing reminders down my legs or biting in areas that are unrelenting, it absolutely can be intolerable. I have found icing areas of referred pain sometimes can break that cycle...as does a TENS.
I'm grateful for just only movement pain rather than included resting pain. Each day varies depending on activity levels. And I admit my activity levels arent enough of the right kindmsince shutting down is much easier 🙄

q

Dear Q,
I am sorry for all the pain! I can't offer much advice, just want to say I empathize. I had troch. bursitis after a fall on the ice once; eventually a steroid injection into the bursa area took care of it. And before I had my right hip replaced I had that guided injection into the hip joint via groin - not fun, but for me it helped for months. So my story was much less complicated. But still, I can remember the pain and I feel for you!
The scoping sounds pretty good - I do remember having the odd cell crop up over the years and being scared by it. In my case, I wish I'd done surgery earlier, because the cancer was apparently between walls of the colon so it wasn't detectable by scoping samples - but I think I'm the oddball and not the rule!
I loved the line about your GI saying that another GI wouldn't think you had UC. Good work with your patient treatment from both ends! For so many years of this, you've done such a good job!

OH 🙂...my RF is tested by my rheumatologist. When I first saw her, I was at my worst with both hips and groin/pelvis area...the RF was high. No RA tho.
Since then, RF has been low. I best see if it's on my blood requisition, and If not, I'll call to request it.

Definitely sciatica...but from impingement at spine or muscle pressing on it or both?
For sure no fun at all!

I've tried the RX Voltaren, but no base is without stickiness. It helped, but very expensive to not be used beause it's uncomfortable under clothes.
I have an aversion to most fragrances in products, so it's trial and more trial. I'll look into Icy hot...do they have an unscented version?
So far so good re salicylates for me. I do use them on my face as well.
Good advice to ask my GP about after I check it out.
Hanging tough for sure!

songlady...I'd fallen on/down the stairs more than a few times over the years...bodyshaping by Heather...I would suspect some of my issues are from that and when I was a kid falling on my tailbone on the ice a lot!

I'm definitely feeling a lessening of symptoms today...but one wrong move of my left hip flexor area could do me in again. At least no spasming or constant throbbing...I'm grateful for that break, and I hope that means healing. When I can sleep on my left side...it will mean I'm good for a while (I hope).

I don't remember your cancer being between the walls...you had lots of testing, and the dye, and a polyp of a specific kind and was it CT that revealed the one not visible via scope? I think the oddballs are who make the doctors raise their eyebrows and take good notice.

Thank you regarding the both ends approach...I've never had to regret my first GI's med approach. I hope it continues...

q

Glad you had a good scope!

I use the prescription generic version of voltaren gel. It dries after about 5-10 minutes and then my clothes don't stick to it.

So sorry to hear of your hip problems. Hopefully the shots will help.

Is there any way to check if your joint and back issues are UC related? What does your GI think about it? I know people tend to think of these things as age related and things that they have inherited or carried over from their youth but since you have been living with UC for years and these joints in particular do tend to get affected by UC, it does seem like quite a coincidence. I come across UCers on forums who say they have been in remission for years but then mention some pain related thing they are dealing with which invariably is in proximity of the area. Even on this forum there are people who have written of the disease changing course in one way or the other even after the diseased site was removed completely. Just wondering if something like that could be possible then in this case too - when you you have kept things super controlled in the colon . Perhaps the disease is sneaking up elsewhere ? Did your Gastro share his thoughts around these joint/muscles or whatever issues ?

For the pain could you try alternating hot and cold treatment to the areas with a wet cloth wrapped around it and see if you find that more helpful? You could alternate with a cold towel from the freezer and then a hot towel or cloth. It seems quite a bit of a work but the alternative would be to first sit in a cold tub and then a hot tub. Or if you have access to a fitness club or spa like place where they have an Ice pool and jacuzzi you could try it there too.
You can also get massage gun like devices on Amazon which offer more targeted relief but with the kind of pain you are describing not sure how helpful they would be.

Also how about supplementing with Vit D and Calcium and perhaps Turmeric/Curcumin if these won’t interfere with your meds? I have read of people finding Liver capsules useful in joint /ligament /muscle pain too.

Voltaren has always been useless in my experience but the brand Deep Heat Max Strength if you can get that is very good. It contains Methyl Salicylate and menthol. Has a rather strong smell though.

Maybe try things like massage and acupuncture in between for some relief too? Swimming for an activity would be perfect too in time. These days there are lots of aqua classes for water exercises that support gentle mobility. And if you live near the sea and can swim in it, nothing likely the sea’s salt water for ultimate relaxation and pain therapy. Maybe plan a holiday to the sea side

On the list of "have you tried..." I have had a lot of relief from dry needling aka intramuscular stimulation for back pain and muscle spasms. Nothing else worked for me, and I tried a lot of things.
The guy who "invented" it is in Canada so should be relatively easy to find a practitioner.

Hi CC...I've had rx for 8% Voltaren...way too sticky penetrating bases for the, so comfort is an issue when my clothes stick to my skin, and it's especially expensive.

Pd...my niece has had dry needling. I'll enquire regarding who she saw. Thanks!

Interesting...while sitting here, I crossed my leg and something clicked where I've been getting sharp spasming when moving in some positions...feels somewhat better, maybe this will be a less intense day. 😳

Thank you all for the suggestions and support!
q

Thanks Seeker...I'll check it out. Wondering if stomach pain comes with using it. I definitely do with NAC if I go over 600mg daily.

q

Update...Im on 1200 daily at this point and no issues. Haven't tried turmeric supplements yet..but I do have turmeric tea.

thats very interesting....can i ask are you limited in your movements or activities in life in any way by the removal of the hip bursa?