Becoming steroid dependent & need help on pain management!

[Keepingfaith]

I've been flaring for almost 3 years and I've been on Prednisone for almost a year at pretty high doses. I've been on so many medications for Crohn's and the only medication(other than what little relief Humira gave me)that allows me to function is Prednisone. I really hate it but I'm miserable without it. I just had a GI appointment yesterday(not my regular GI because their office was closed) and he told me to continue tapering and call him if I get any worse so he can admitt me.

I tapered down to 15mg yesterday and last night/today has been a nightmare. I'm on the swim team and have practice 4 days a week PLUS Insanity(it's a popular intense workout)and I feel like that and this taper is killing me. In the past 24 hours I've taken 4 Lortabs, about 5 tramadol, my Cimzia and my regular medications. Only once in the past 24 hours have I had noticable relief. That's crazy! :ywow: I usually take maybe 4 lortabs a MONTH. Much less in a 24 hour period. I had to call my mom to take me home from school because I couldn't drive. The on call GI was going to admitt me but he freaking raised my dose of Prednisone!! So I'm back to 20mg.:thumbdown: He told me yesterday he would rather save my bones and let me have uncontrolled disease then keep me on Prednisone any longer. Yet he raised my dose.

What ELSE can I do? Since starting the swim team at my school I have had less of an appetite but my diet has improved a lot. Yet my symptoms haven't. I'm hoping Cimzia will kick in within the next few weeks but what do I do if it doesn't? Do I just continue in this flare until it eventually goes away? And my big question:

What pain management options are available for someone in highschool? Obviously at the moment my current pain treatment sucks. I don't like taking narcotics and Tramadol is losing effectiveness.

I just wish I could plan everything out with this disease. I hate the unknown! I would love to know if I'm going to be in remission anytime soon or be in the hospital so I can plan around it. A Crohnie can only wish! :ylol:

Any support/advice/opinion is welcome!

 

[Adam1971]

Hi there. I am so sorry you're having to face this bs. I wish that things would improve and you could be off prednisone. I don't have any advice, just warm regard and prayer good wishes. Hang in there...it has to get better.

 

[Keepingfaith]

Thank you Adam Support and prayers is just as good, if not better, than any advice can offer! I hope you're making it okay yourself!

 

[Adam1971]

I'm actually slowly getting worse I have an mri on Wednesday to see if my small intestine is tied in a knot. The doc I think is thinking that I have a stricture that is worse and I can't help but think I'm headed toward resection discussions.

 

[Keepingfaith]

Just sent you a private message! Urghhh. You're already on a increased dose of Humira too, right? I'm sorry you're getting worse. If your intestines are starting to twist it definately sounds like you might need to see a surgeon and another GI to get a second opinion. It always helps to compare options.

 

[Thermo]

Keepingfaith how many surgeries have you had? As you guessed the reason he raised your dose is because you are steroid dependent and they are probably trying to get you stable in preparation for something as staying on the steroids long term is the worst thing you can do. Did he say anything about what is next? Where are you feeling so much pain from? Usually when you feel pain it is due to a complication from the Crohns not usually just the disease itself. Fistuals and abscess seem to cause most of the extra pain.

 

[Keepingfaith]

I haven't had any surgeries other than one to have my gallbladder removed at 13.

I'm having gastritis pain, lower right abdominal pain(ileum), lower left abdominal pain(sigmoid), rectum pain AND vaginal pain. I've had a rectovaginal fistula in the past so I'm hoping it's not back. My joints hurt too but it's tolerable. Because he isn't my GI he didn't say much. He said he'll see me in 6 weeks to make sure I'm stable. Doubt I'll go back to him.

I see my regular GI in a few weeks.

 

[Thermo]

I'm sorry to hear all of this, how sure are you that its sigmoid pain? In my experience I have mistaken sigmoid pain for small bowel distention due to obstruction and vice verse after my surgery due to the draining and sewing of my ileosigmoid fistulae. Not that it really matters as pain is pain. Have you discussed surgery? I really don't like that they are keeping you on steroids so long. You have so much life to live and steroids really puts a damper on it.

 

[Keepingfaith]

I feel the same way...Other than my ileum, my sigmoid is the worse inflammation wise. I've learned where the pain is coming from over the years. Heck, I told my pediatrician my rectum was really inflamed and I thought I had a fistula(my first & only fistula) and after a CT it confirmed what I thought. I know my body really well after a I've been through with this crud.

I've had many obstructions and they hurt so bad but I usually just go on a liquid diet and then it goes away. I also have delayed gastric empty sometimes because my gastritis is so bad. Fistula and obstruction pain are 2 completely different feelings from what I've experienced.
I've had a few doctors tell me they believe I'll never be in remission. A few GI's have told me I don't qualify for surgery yet because the disease is too widedpread so I don't know what to do. I just want more quality of life. I have JRA too and my Rhuematologist and GI are trying to make me as comfortable as possible but sometimes I really want them to cut me open...

 

[Lawyerboy]

Hi Keepingfaith, have you considered trial drugs like Vedolizumab or Ustekinumab? Ustekinumab seems to be working for people who are anti-tnf refractory.

 

[my little penguin]

Have you been to a pain clinic?
SOme pediatric IBD clinics have staff who also work in pain clinics.

See here

http://www.cincinnatichildrens.org/service/i/ibd/team/

not sure what is close to you.

Is there an ICN near you-they usually follow the same standard of care

https://improvecarenow.org/about/who-we-are


hope you get relief soon

 

[Keepingfaith]

MLP: I actually know of a few pain clinics down here where I live and a friend of mine with Crohn's loves her pain specialist but from what she tells me, I have to wait till I'm 18. :/ Thanks for the links! I'm about to look through them now! I'm going to ask my GI doctor about pain management when I see him in a few weeks.

Lawyerboy: My mom as actually looked into a few clinical trials for those drugs but none will let me in until I'm 18. An Abott drug rep spoke to me about getting into a trial with a drug that isn't Anti-TNF but of course...I have to wait till I'm 18. I can't wait 2 years. I was hoping to be in remission by 18!

 

[annawato]

Wow I'm sorry to hear what a tough time you've been having. Everyone has said some good things so sorry if I repeat. I think getting in to see a pain management specialist is very important. Its so easy with all the pain that crohn's delivers for us to become dependant and then tolerant of pain meds and thats not somewhere you want to be. I'm sure there must be someone who'll see under 18's.
Reducing pred is also a great idea but first you have to give time for the cimzia to work so that you are not left without any meds on board. it takes a long time to reduce pred when you have been on it awhile - sometimes it just does need to be done more slowly. Hopefully when your regular GI gets back he can help you out with a better plan.
i was wondering if you were trying to do too much exercise at the moment. After all we are told to rest when we have the common cold to help healing and I'm sure the same applies to any disease. Perhaps just giving up the Intense class until your body has got over this flareup will help. Don't get me wrong, exercise is great but sometimes the body needs the balance of rest too.
Crohn's is a horrible disease and one of the most frustrating things is being unable to make or keep plans, but life tends to do that too.
Theres no point in worrying about something that may not happen. The cimzia might be the perfect drug for you and if not it then another one will. Just concentrate on the things you can control, stay positive, be proud of your accomplishments (like the swim team) and let the future look after itself for now. Its tough enough being a teenager without having to pt up with all the hassle of crohn's but know there are a lot of people here who aare thinking of you and hopeing that it all sorts out as quickly as possible.

 

[Keepingfaith]

Thank you so much Anna! It's great to hear support and advice from someone who understands. I think i may have been pushing myself too hard. I don't complain hardly at all but the other day at swim practice I got so frustrated at the coach. He knows oil have JRA & Crohn's and still doesn't get why I tire out more than others. So aggravating that people aren't willing to take 5 minutes to educate themselves.

My GI is affiliated with the Childrwn's hospital up north of my city so in hoping maybe they will have more pain management resources for people my age than in my town. It amazes me we don't have many pediatric pain specialists near where I live since it is a city!

 

[annawato]

i'm glad I could be of support even if just lending a friendly ear. I think that poor old body of yours is screaming out for a rest, so listen to it and be kind to yourself and just take thing a little more easily. oh yes, and stay in touch! smile.

 

[Catherine]

What are you doing in the tense class..

Sarah usally has no problems with the swimming, but she major problems with running in her 2 hour dry land session.

 

[Ckt]

Keepingfaith,I just wanted to send you a big hug and positive thoughts! I so admire your tenacity! Training on the swimming team and going about your school has got to be rough with both crohns and jra! Your positive attitude even while frustrated and feeling so rough gives me a lot of courage!and I'm so happy you have found so much support here.
No one should ever have to deal with debilitating pain and I do hope you can find resources close to you with those who handle pain issues in your age set..
I'll keep you in my thoughts and prayers! Cindy

 

[Keepingfaith]

Thank you CKT! I have found a lot of great support here! I'm just tired of being a slave to my Crohn's and missing all the milestones everyone else gets to do like getting their license, going to school dances etc. so I wanted this to be a school year of change. Hopefully I can finish out the season on the swim team

Thanks for the prayers! I pray daily for other Crohnies & their loved ones <3

 

[Ckt]

Keepingfatih, you're so sweet! I completely understand about not wanting to miss out on life/ it's really frustrating isn't it? I hate that you have to go through this at a time when I know you would rather be going to school,being social. I'm a lot older than you(51) but I feel the same way. I can't follow through with commitments because i am constantly in the bathroom,sick.
We can pray for each other and others who endure this awful disease