So much worse than Crohn's

[chrisnsteph1022]

I've been in a flare for 19 months. It sucks. But even through heavy bleeding, diarrhea 15-20 times/day and daily use of oxycodone, I was still able to go to work. I only missed one day because I was in the ER.

Last week, we went to the beach. I have a history of herniated discs in my back and it flares up every 6 months or so. It just causes a lot of pain, but I can still function. Well, I did something our last night at the beach. I gave my 5yo, 42lb daughter a piggy-back ride down the beach for 10-15 minutes. My back started kinda aching that night. We drove 12 hours home on Thursday and my back was really hurting, but tolerable. I laid in an uncomfortable hospital bed for 4 hours Friday for my remicade infusion (doubled the dose and it seems to be working! yay!). Saturday morning, I couldn't walk. I kinda lurched around, holding my husband's arm for support. Sunday was a little worse. Monday, I was supposed to go back to work for the first time in over a week. Instead, I went to the ER.

They gave me an IV of dialuded and taradol (?) and did an MRI. I still couldn't walk (they had me in a wheelchair). Another dose of dilauded and sent me home with a script for muscle relaxers and pain pills and a referral to an ortho. They didn't help. I called the orthopedist they referred me to and couldn't get an appointment until mid-July, 3 weeks away!! Meanwhile, it's getting worse. Tuesday, I went to a chiropractor and got an adjustment. Wednesday it was worse. Went back for another adjustment. Today is worse yet. All I can do is lay here and cry. My mom and MIL are taking shifts to take care of me because hubby has to work. After not being to walk, even with support, he got me a walker (yesterday). It hurts to even walk with the walker, but at least I'm not collapsing.

I'm supposed to go back tomorrow for another adjustment, and I found another ortho that can see me on Tuesday. My boss is being very understanding and letting me work from home. It's month-end and I couldn't take sick time even if I had enough. Too much to do. I've never been gone from work this long, though and it's driving me crazy. The pain I get from Crohn's is usually 5-7 on a scale of 10. This is an 8 when not moving, 10 when moving. I literally canNOT put my weight on my left leg. I just don't believe this is just a couple herniated discs and sciatica. Like I said, I've been dealing with that for 13 years, off and on. A couple days of rest and it clears up. This has been over a week with muscle relaxers and doing NOTHING but laying with a medical wedge under my knees and ONLY getting up to potty.

Sitting for more than 5 minutes makes it much worse (which is why I can't go to work). I only had diarrhea 1-2 times Sat-Tues, but yesterday and today, it's up to 5. Surely the double remicade isn't wearing off already?? You know how hard it to wipe your butt when you can't reach it due to back pain? I have never felt this much pain in my life. I wish they'd just admit me so I could get constant pain relief and nurses to help me potty. I just can't ask my hubby or mom to wipe my butt.:blush:

Anyway, I just needed to vent. Obviously, I'm not going back to work anytime soon. I'm scared the chiro is just making things worse, but several people have urged me to trust the chiro, so I'm giving it a shot. At least until I see the ortho. I'm way too young to need a walker!! (I'm 32)

 

[GrumpyGuts]

So sorry to hear about your current plight ChrisnSteph1022. Sounds like you are really going through it, but hopefully you will be better soon!

I had a major car accident(hit from behind) last year and it was horrible not being able to get around, especially the potty. I'm lucky I have an ostomy so pooping is easier for me.

Hopefully the double Remicade will get you into remission so that you won't have to deal with both at once!

Hugs to you!

 

[Slim Johnson]

I might get flamed for this, I don't believe that a chiropractor is a legitimate business.

You stated yourself that your back pain was worse after both trips to get adjusted. I have heard stories about people being severely injured after going to a chiropractor. Disk damage, nerve damage, broken bones.

It's possible that they made things worse, rather than better.

Regardless, I hope you can get things sorted, and get back on your feet.

 

[chrisnsteph1022]

No flames from me. I kinda think they're quacks, too, to be honest. But SO many people have pushed it on me, including my very well-meaning hubby. I promised I'd give it until I see the ortho. So tomorrow or Monday may be my last adjustment. I told the chiro it was worse and he said sometimes it gets worse before it gets better, but he was SURE he could fix me in a few weeks. I just don't know if I can wait that long. My mom has severe back/neck problems (has had 3-4 surgeries, including a couple donor discs) and she does NOT trust chiros. She wants me to see a neurosurgeon, but apparently, I need a referral to see one. The ER referred me to an ortho.

 

[Slim Johnson]

Well, I am happy you have a good support system. At least they can help minimize your suffering to some extent. I also hope the ortho can get you some answers.

 

[chrisnsteph1022]

Oh, I definitely have good support. Between my mom, mother-in-law and husband, I have had full-time care all week. I'm not really able to function on my own at this time.

 

[Slim Johnson]

Oh, I definitely have good support. Between my mom, mother-in-law and husband, I have had full-time care all week.

Good for you!

Having people to help you get through the day can make the difference in your recovery. And don't be afraid to ask any of them to help you with whatever (including cleaning those hard to get to places. :wink I am sure your mom has already seen it all, and I am sure your husband would not mind either. I would do it for my wife. Without a hesitation.

Being out of work for an extended period sucks too. I have spent months on end, just laying on the couch feeling miserable. I just look for ways to occupy my mind (like this forum for example) and pass the idle time.

Have you had a recent dexascan? Any osteopenia/osteoporosis? Spinal stenosis? Steroid use has given me osteoporosis, and spondylitis. Granted I don't have near the pain that you are going through now, I do have these issues, thanks to the Crohn's:voodoo:, and it's related drugs.

 

[chrisnsteph1022]

Never had any bone scans. I had an xray 9 years ago that showed arthritis from the Crohn's in my right hip, which is a huge source of pain right now. Middle of my back to around my right hip, especially when I step down on my left leg (weird, huh?). They did the MRI at the ER, but no xrays to check the hip.

 

[Slim Johnson]

May I suggest you ask the osteo about doing a dexascan? I am not sure what is causing you pain, however we Chronies have issues with bone density. In part to the medication, and also due to the poor absorption of minerals and nutrients our guts are known for.

 

[RFarmer]

I had a friend who got an MRI done of her hip, because it was hurting her. Nothing showed up. But for six weeks, she could barely walk. Always with a limp. Always with a cane. Never far either.

They took her back in, after her doc found out she was still in pain. The MRI'd her again. Her hip had been fractured the whole time.


I'm not quite sure how she lived, because I was under the impression that most blood-making was in the hip. If it was fractured, blood would have leaked out. She should have atleast noticed that her leg was red.

Point being, you might want to get a second opinion.

Also, I agree with Slim. Stay away from chiropractory. Atleast, in your condition. If you want to experiment with weird stuff (it's thoroughly weird), be my guest. Just don't do it when you're in this much pain already.

Feel better soon

 

[Gra]

Dear Stephanie, I am really sorry to hear that you are in so much pain and having so many difficulties. Sending hopes and good wishes to you.

Gra

 

[Miss Underestimated]

I just saw this. Have you checked into the newer laser surgery for back injuries? Some doctors just opened a clinic here and they're getting rave reviews - back surgery and almost no down time.

 

[kllyeve]

Sending hugs and best wishes for a speedy recovery!! So glad you have so much help.

 

[mnijihc]

I would suggest trying out physiotherapy. I agree with the others when it comes to chiro. I know people who have been really hurt by them. Physio is different and may provide some relief at least.

When you injure something the muscles in the area go "AH!" and then tense up and spasm to try to protect the injured area. Heating pads or hot water bottles may provide some relief to the muscle spasm side of things, it may be worth it to try laying on it and even if it isn't lasting relief it may feel nice at least while you are laying on it.

If your hubby is into it you can also try to get him to rub or massage a different part of your body or just lightly rub your back. It can help to distract you a bit tactily and provide from relief too.

I have CP and I know a thing or two able muscle spasms - these things can be coping tools at the very least! It sucks a lot though and I hope you get some relief soon!!!!!

 

[Ckt]

Well I may be the one to get shot down but I do love my chiropractor! He's my biggest cheerleader when it comes to everything including crohns. Having said that, he hasn't really helped the crohns at all but has kept my back and neck in pretty good shape. But he isn't very aggressive either..doesn't do th big neck crunches even when I want them!
You know your body. If it fels like its hurting it more, don't go. See what th ortho has to say and if surgery is indicated..no offense, but I would go to a neurosurgeon. And there are many new treatments out there!
Hope you feel better soon!!

 

[tots]

My 22 year old son was in an accident a few yrs ago. He broke his back.


Long story short. Even if you dont have surg. The hardest surg/treatment for an orhtopedic dr is your back. The easiest thing for a nero dr is your back. Given those facts it was easy to pick. My husband aslo work for a spinal implant co. All the "top dogs" in the company reffered us to a neuro guy.

Lauren

 

[jami]

I see this is from July, I dont know how you are doing know, but I dont understand why they would send you to a ortho doctor, I work on an ortho floor and sometimes neuro. All our back pain admits always go to neurology. If the ortho doctors have not helped, maybe consider talking with a neurologist about the back issue!!

 

[chrisnsteph1022]

Well, I'm 'better' than I was, but still having severe hip pain. I've now seen two chiros, two orthopedic surgeons, had xrays and a bone scan. They can't find anything, other than the degenerative disc disease in my spine. One chiro just wanted to crack my back without testing motions, looking at xrays, etc. I got 4 adjustments in 7 days and it didn't help at all. The ortho wanted to an epidural steroid injection, but was denied by insurance (his facility wasn't covered, even though he was). So I went to another chiro, who wanted to charge $7k for spinal decompression and said I wasn't a good candidate for manual manipulation due to the severity. I went to another ortho who said to just wait it out and gave me muscle relaxers. Then I saw my GI for a regular check-up and he said I needed to see my primary doc for a referral to a rheumatologist. So I did that. The day of my rheum appt, on the way there, they called and cancelled my appointment. It was rescheduled for next week. So I have an appointment next Tuesday with the rheumatologist.

My back is ok, but my hips hurt all the time. I have not slept in my bed for months (can only sleep in recliner). We had to cut our vacation short because I could not sleep ALL night due to the pain. I use ice/heat daily, and usually an oxy along with that (sometimes for my Crohn's pain, sometimes for my hip). The muscle relaxers do nothing. The pain is in the front of my hip joints and sometimes down the front of my leg. Due to the location of the pain, the ortho said it could be referred pain from the back, but it's not directly related to the spine. Plus, the bulges are not severe enough to press on nerves. I don't know what to think anymore. Oh, and my toe joints hurt pretty bad, too, but they're so little, I guess it doesn't bother me too much.

I did miss 2 weeks of work, then went back part-time for another 2 weeks. I could not sit in my chair for more than 4 hours/day. I still have a hard time being here 8-9 hours and frequently leave early. I work from home every night/weekend anyway, so it's not a big deal to leave early.

I had another infusion 3 weeks ago and it didn't help/hurt the joint or Crohn's issues. Since it doesn't seem to be helping anymore, and my GI is out of options, I'm going to a specialty clinic for Crohn's next week. I haven't had to use my cane in a few weeks, but I try to really limit my activities. I spent two hours in the grocery store yesterday and could barely walk last night.

Honestly, I don't think my back is the issue. Yes, there's a problem there, but they're saying it's mild (though advanced for my age-32). Mild enough that it shouldn't be causing the degree of pain that it is. Plus, the pain is in the wrong 'spot.' But the xrays on my hips were normal. I fear that it's RA, but wouldn't that show up on an xray??