Possible AS - want to treat inflammation with NSAID but have IBD

Hey Afdiz,

Right now I am really contemplating taking an NSAID. I too probably have AS now and my tailbone/butt bones hurt. I also have sciatica pain due to this. I'm so distraught that I could possibly have two diseases now. My eyes feel so icky. What are you doing for your AS and what are your symptoms?

I am not currently doing anything about AS, I have a long laundry list of health problems and other things have taken priority but I am going to be seeing a rheumatologist soon. My brother is having the same problems as I am, his doctors think he has AS but he has to go through the VA so its taking a long time for them to figure it out. But they have him on Embrel and he says it has helped since he started it.
My back gets really stiff, sleeping is very painful for me and it is very difficult for me to get out of bed. If I don't take something to bring down the inflammation, breathing gets difficult because my ribs start to swell. I can't stand up straight, but that could be because I have scoliosis (about a 30 degree curve) in my lower back, but my boyfriend says that sometimes he can see a slight hump in my upper back. I have problems with my sciatica as well, I don't know how to correct that, I usually just stick it out and whine about it until it goes away.
As far as my eyes go, I haven't had an Iritis flare in a few months, but sometimes my vision shifts or gets blurry. I blink a few times and it usually corrects itself.

My mom has AS AS is scarier than Crohns to me right now. So far AS has caused me heart pain, lower back pains, buttocks pain, thigh pain, muscle spasms, burning in my spine, eye inflammation, dizzy, short of breath....it all happened so quickly. I'm so depressed and at a lost. My body is self destructing and I'm pretty sure I won't be alive much longer. I look at my son and cry everyday; I can't concentrate on school anymore. I'm in constant discomfort now. Crohns and AS all in a year and AS seems to be spreading fast. I thought Crohns was going to kill me but now, not so sure

Disease progession can be slowed down and managed with treatment, try to get in with a doctor soon so you can start the process. Alot of the things you described can be caused by Crohn's too, how are you doing in that area?

My Crohns is very quiet right now and I was hoping that it was Crohns related but its not possible being that my symptoms are almost non-existent. I'm so tired of fighting my body. Heading to my doctor in an hour....

Hi, I'm on this forum because my 5 yr old has this disease.
She also suffers from Juvenile Idiopathic Arthritis (Polyarthicular).
Her Rheumatologist can not rule out AS or other kinds of arthritis due to her having IBD.
Right now we're just taking one day at a time. Her pain can be debilitating and she suffers from most of the symptoms you do.

We were giving the OK to use arthritis rubs (tiger balm and Icy Hot to name a few) that have NSAID's in them BUT we were told since it's applied to the skin that the NSAID's don't affect her GI track as much. Grace has had no increase of GI problems since doing this. Now some GI's will say NO WAY to rubs. SO you'll have to ask but nothing helps my 5 year old and I wasn't going to watch her scream at night. The rubs does help my Grace a bit. It takes the edge off.

Hugs, it will get better, Just hang in there.

Hi Jaja,
I too have issue with my sacroiliac joints which gives me pain in my buttocks/hip and sometimes irradiate to what is similar to sciatica. Luckily, my condition is bearable, I can generally manage it with cold, heat, tylenol, emugel and physical therapy/ exercice.

Several options where given to me by my rheumatologist (in her opinion, it is easier to bring a quality of life to people with rheumatological disease than it can be for people with GI issue, we have both, joyful but what I am saying is that these conditions can normally be adressed with a decent results).

What option were given to you? Any mentions of using methotrexate, or biologics to treat your condition? Sometimes, corticosteroid injections in the faulty articulations can bring benefits. Certain specific exercises that adresses for exemple the transverse abdominis can be quite helpful at reducing the excess of mobility (that you maybe have, I know I have it and it can be quite common with crohn) in the sacroiliac joint by increasing its stability.

It's worth considering all these options.

I was in remission when all of the extra intestinal manifestations came on, so I wouldn't rule it out as being Crohn's related or something else. It could be both, or one or the other. Its hard to determine what is causing what. But the most important thing is is that you are experiencing it regardless of what is causing it. Like Farmwife said, NSAIDS that are not ingested are recommended for arthritic pain, I have patches that I put on my back. I felt like it did help, but it took a long time and because I move so much (because of the pain) the patch wasn't staying on very well
I have been taking fish oil every night for the last 5 days, I feel like that has made a big difference, I felt better today than I have in at least a year.

Afidz, from what I read on the CCFA page, AS flares even when CD is in remission. I don't feel like this is Crohns related although in my heart, I wish it were. I am going to find out about the patches when I get to see my rheumy. I hope I can get it. I reordered my fish oil also, thanks so much for writing to me. I am dealing with so much depression at the moment and fears. I am crying all day at ever moment I get to be by myself. I just can't cope with the possibility of having two diseases and AS is extremely scary to me. The flares are so much worse than my Crohns flares. Don't ever google what spinal fusions look like, you will cry for hours if you're anything like me....

PsychoJane, I am scheduling appointments tomorrow. I am seeing so many specialists now. It's consuming my life...

Farmwife, your child is my hero bc honestly, I am not doing so well mentally and I cannot imagine feeling this pain at such a young age. My GYN thinks I am too young to have so many diseases but it's pretty obvious to me that it's happening to people much younger than me. I'm crying right now, maybe I was not built for this....

Hi Jajabinks,
Both my girls has AS and my younger one also has Crohn's. They've both had a really hard time with AS (the older one missed a whole semester of college and the younger one has barely been to school all year). They've both tried most of the biologics available - Enbrel, Simponi, Remicade and Humira. The older one is doing great on methotrexate and Humira and the younger one is just beginning to feel better on Humira and Sulfasalazine.
The younger one was been allowed to use NSAIDs even though she has Crohn's. In her case, the Crohn's is mild and the AS is severe, so benefits of NSAIDs outweigh the risks.
AS is a very scary disease but spinal fusion is quite rare and now the newest studies are beginning to show that biologics actually prevent disease progression.

Also - muscle relaxants are very helpful for muscle spasms. Both my girls take flexeril.

Thanks but you have more strength then you know.
As I tell Grace while in pain, is start climbing the mountain and you will make it to the top.
Once the pain is gone I ask how the sun looks.
That's simple and maybe stupid but she/we get the point.

As far as all the specialist (Grace has 9) try to make them on the same day, One day is easier to think about than a bunch of days strung out?

Does your family go with you to the doctors?

Listen to Maya,
She's the only reason I haven't lost my mind with Grace's JRA.

Jajabinks, I think there is a bit of miscommunication, probably on my part. I am not saying that Crohn's is causing your back problems, but it could be possible that Crohn's is causing your symptoms (like your eye problems) ANyways, its not really important, I just didn't want to confuse anyone. I apologize if I did.
As for your depression, I completely understand. I have been uncontrollably crying for a few weeks now, most of the time, my health is simply too much to bear. But, you are a strong person, don't ever forget it. It takes a lot of strength to deal with what we have to on a daily basis. Crying makes you human. We are all here for each
other, just don't forget that you are never alone

Yes, I understood you fine. It's okay. I just really hope I don't have AS but so far, it seems I do. I am in a lot of pain today. I did some light exercises yesterday and today my body hurts and I have a headache (brain fog also). I've been crying all day today again, this has been the worse thing to happen to me. I was able to deal with Crohns but AS chronic pain is doing a number on my mental health. I am at a lost. It is affecting my family and I am really scared guys.

Thank you Maya, I really wish my PCP prescribed me flexeril instead of Celebrex. I opted for Celebrex bc I wanted to attack the inflammation. I am doing so poorly right now.

jajabinks, is there a way for you to seek help from a therapist? It might help you a lot with putting things into perspective and maybe lifting some of that fog. We all have our breaking points, I had mine a few weeks ago. There is no shame in seeking help, its encouraged for people like us. Being sick is hard

I definitely agree that seeing a therapist could help. Both my girls see therapists work with kids with chronic illnesses.
You could take Flexeril and Celebrex together since Flexeril is a muscle relaxant, and Celebrex is a NSAID. My older daughter has taken both in the past (at the same time).
Also, I think it's important to remember that though things might seem really bad now, they could get a lot better. Plenty of people with AS live normal, fairly painless lives.
My older daughter, for example, missed a semester of college and spent that time in a wheelchair. I was honestly very worried that her hips were permanently damaged and she would need replacements in the next year. However, once we got her on the right combination of meds (Humira and mtx), she's able to walk, run and play soccer. She's basically a normal college student.
Hang in there:ghug:

Thats great to hear Maya, thank you so much for sharing that. I don't know about anyone else, but it gives me hope.
I dont really know how AS works, I haven't done too much research on it yet. Is it tlike Crohn's where you flare and go into states of remission?

Yes, exactly like that. My younger daughter has both though and they seem to sometimes flare together and sometimes at different times. She's only had Crohn's a year though, so it's difficult to tell.

Hello everyone,

Sorry it took so long to respond, things have been a little crazy for me (trying to make it through this semester with good grades). I really appreciate all your words of encouragement. I began seeing a therapist and I tried to get Celebrex but my insurance is giving me a hard time so I am seeing my PCP about this tomorrow. My spine feels like it has a fever today and my legs are weak. What do you think about this? I am also dealing with brain fog and it is worrying me bc I never had to deal with this. I feel so defeated guys. I just want to be happy and provide for my family. Health insurance is really annoying me these days.....

Farmwife, my dad accompanies me sometimes. My hubby is usually at work.

I have AS and Crohns. Humira resolved my AS symptoms within 24 hours - I played ice hockey the day after I took my loading injections. I have not looked back since. If AS is your primary issue, run, do not walk, to the pharmacy to get Humira.

Farmwife said:

Hi, I'm on this forum because my 5 yr old has this disease.
She also suffers from Juvenile Idiopathic Arthritis (Polyarthicular).
Her Rheumatologist can not rule out AS or other kinds of arthritis due to her having IBD.
Right now we're just taking one day at a time. Her pain can be debilitating and she suffers from most of the symptoms you do.

We were giving the OK to use arthritis rubs (tiger balm and Icy Hot to name a few) that have NSAID's in them BUT we were told since it's applied to the skin that the NSAID's don't affect her GI track as much. Grace has had no increase of GI problems since doing this. Now some GI's will say NO WAY to rubs. SO you'll have to ask but nothing helps my 5 year old and I wasn't going to watch her scream at night. The rubs does help my Grace a bit. It takes the edge off.

Hugs, it will get better, Just hang in there.

Click to expand...

Do you know about o24?

However, with a child, please be careful of the dose. It's much more powerful than Tiger Balm and can easily make her dizzy and nauseous. I use it when my spinal pain gets out of hand, but lately my TENS unit is taking over that job. Still, the TENS can't cover as much area as the spray can. I mostly use the TENS near the tailbone, and the spray, over the area near where the ribcage meets the spine.

The nausea isn't caused by inhaling it, it's because she can absorb too much through the skin. So don't cover too much body area... I learned that lesson the hard way. It does kill pain very well.

LDN is used for both conditions.

Dan

Hi. I can empathize with you. I have recently been wondering if i have AS as well. I found this on a website that i thought was very interesting:

http://perfecthealthdiet.com/category/disease/ankylosing-spondylitis/

Another Crohnie recommended this diet to me and I have been on it for about a month. I thought this man's story was inspirational. I am getting ready to ask my doctors about AS. I had not heard of it before, but have deformed vertebra, fusions, and scoliosis... not sure if it is strictly congenatal or if there is an association with AS. Either way, if this helps me as much as it seems to have helped him, I will be grateful on many levels. I am a mother of two and often feel defeated as well. I feel like I can't be the mother/wife I want to be with this disease. I often have bouts of depression, etc...

I send positive thoughts your way. One day at a time, one breath at a time. That is the only way I get by. Good luck.

I'm surprised your doctor only has you on celebrex. Has he spoken to you regarding methotrexate, plaquneil (sp?) or Imuran and / or Humira, Enbrel or Remicade. You should also be getting muscle relaxers (baclofen, methocarbomol) and some sort of pain meds.
I take Remicade and Imuran along w/ Lidocaine 5% patches and methocarbomol. I am unable to take NSAIDS due to having type 1 diabetes and can't take any narcotic pain meds due to allergies. Please talk to your doctor about these types of medications, they could really make a difference.

Poop2Much how did AS present itself to you? I am dealing with horrible sciatica pain. I can't sit for long. If I go about my day normally with a little walking and sitting in class I am bedbound the next day. What were your symptoms?

Calmcolon that is exactly how I feel. I am a spontaneous and adventurous mom and these new condition has really changed me. I can barely do much anymore and the laundry and dishes are stacking. My home has never looked like this. I am so distraught. I am dealing with really bad depression. Never in my life have I felt this blue!

Alba, I am self medicating at the moment until I see a Rheumy in on the 10th. Hopefully I can get some help bc I have hit rockbottom...

This forum really helps me, thank you so much everyone, honestly...

D Bergy do you have AS? Has LDN helped with it?

No I don't have AS. I did use LDN for a couple of years but it did not work as well as I had hoped it would. Imuran also failed. I use an alternative treatment now that I had several years of experience with prior to my diagnosis. It appears to be working better than the other two.

I recall that LDN was used for AS as well as Crohns. Since you have both, it would seem to be something to consider. I also know of an alternative treatment for AS but it has only been used on one group of people that I aware of, but it is claimed that the results were good. I can't verify personally since I do not have AS.

Dan

Just checking in. How has it been going? Were you able to get out and do a little something?

My Grace was on LDN. It wasn't enough to help. Really the mtx and humira are the drugs that help the most. I hate giving them but you should see her play now. She doesn't spend her life in the bathroom or in bed. As a mom that's worth giving these shots.

Hugs

Thank you for having me in your thoughts Farmwife. I'm not doing well. Just got out of the hospital yesterday; I was in there since Saturday for an obstruction. Not sure if the peanuts or Naproxen caused it. Now I'm in bed with burning body pain all over my legs, ribs and back. I pinch myself sometimes to see if ill wake up from this nightmare. I miss my old body so much it's depressing....my rheumatologist appt is tomorrow. I'm so glad your daughter is out and about, no one deserves this pain. It's horrible. I have lost myself in all of this.