Full body spasm- Crohn's Disease

[Ashley]

Hey there!
This is my first post!
I was just wondering if anyone has any suggestions to help my belly today.
To start:
I was diagnosed with CD on my 18th birthday after suffering for a year or two with terrible stomach pains, loss of energy, frequent trips to the washroom and all sorts of other nasty stuff.
I am 23 now and have been dealing with the disease for 5 years now. I tried lots of therapies in the beginning, natural medicines, Pentasa, Entocort, Prednisone etc before finally settling on Remicade, which I have been on now for about 3 1/2 years.
Ususally the Remicade infusion, which I have every 6 weeks, works quite well and I see great improvement in my health for a while. Usually about 4 weeks into my 6-week cycle I start to feel the drug wear off and my symptoms return. Very occasionally, like this cycle, the Remicade doesn't seem to work at all. I recieved no relief from this last infusion and my symptoms have been gradually getting worse for the last month or so.

Now for my question:
During these times when I am running to the washroom constantly, in pain, I sit there and my entire body seizes up in a spasm. oo: My face goes red, even my fingers stiffen. It is so painful and usually nothing come.... well you know "out"
... or very little.

During these times I try to drink tons of water and put a heating pad on my belly to help soothe it but I was wondering if anyone here has any tips as some of you have been managing your disease a long time and have surely come up with some helpers!

Thanks!

 

[Crohn's 35]

HI Ashley Welcome :welcome:.

Sorry you are having problems and you have come to the right place for information and support. As for spasms, you could ask your doctor for Buscopan, it works for some other Crohnies, it worked for me but I dont get them any more. Maybe your Gi could get your doses closer together so you dont suffer so much.

Heating pads do work but not fully. I have assumed you have tried imodium even in low doses it has a anti bloat and cramp for the short time of pain you get.

Lots of people here to assisst you. I havent been on Remicade for 2 years and only a short time. Good luck.

 

[Peaches]

Hi Ashley and *welcome*! You and I are kinda in the same boat sounds like?? I have been on Remi for over 6 years - and for quite a while now I have had problems with the effect not lasting the entire time. They recently increased my dosage from 5mg/kg to 7.5mg/kg. I also had to do a very short prednisone taper for the first time in over 6 years back in the middle of December. This made me realize how long I have been "putting up" with being symptomatic and made me realize that I have active disease process going on - even on the Remi - NOT good. My intervals are every 8 weeks, and it wears off at about week 6 for me.

My recommendation is to see if they can either increase your dose of Remi or maybe shorten your interval (although it is already shorter than "normal"). If you continue to have problems like this - it may be that you are losing your response to Remi and need to try a different medication (Humira or Cimzia??). This is my route should the increase not keep my disease quiet.

I'm wondering if bathroom issue/pain you are experiencing is a possible stricture/narrowing somewhere. Again- possibly active disease that is causing you problems - which is why I'm making the suggestion above. You need to let your doctor know as you don't want any damage done that would possibly make you need surgery in the future. Good luck!!

EDIT: Just read Jetta's post - just wanted to say *be careful* with using Imodium if you aren't fully sure if you have a narrowed area or not - as you could get yourself into a situation with a blockage on the Imodium.

 

[Ashley]

Thanks ladies!
I have booked an appointment with my GI on Monday before my Remicade. Hopefully he will have some words of wisdom (and a better attitude- does anyone else have a Dr. who is kind of a jerk? He is supposed to be the best in the city though...)
Jettalady, do you happen to know if I need a perscription for Buscopan?

 

[Crohn's 35]

Thanks ladies!
I have booked an appointment with my GI on Monday before my Remicade. Hopefully he will have some words of wisdom (and a better attitude- does anyone else have a Dr. who is kind of a jerk? He is supposed to be the best in the city though...)
Jettalady, do you happen to know if I need a perscription for Buscopan?

Yes you do! Should be no problem!

 

[Fog Ducker]

Welcome Ashley. I had those same pains a few years ago before I was put on Remi, I used to call it "My labour pain" Even though I will never have to go through child birth, the pain is what I imagined it to be like. It was brutal! Id sit on the toilet for ever doubled over and groaning in agony. But luckily I havent had it since I started on Remicade 2 years ago.
I startd on 5mg/kg every 8 weeks as seems to be the norm, but I also found it not lasting the full time, so I was changed to 10mg/kg every 6 weeks and it has helped a lot! I am also on methotrexate.
You should talk to your GI about increasing the dose, it might help.

I know what you mean about having a jerk doc. But Im in the same boat, he is apparentely the best in the area. I have even had discussions with other patients and nurses, that he is a genius when it comes to this stuff, but just doesnt deal with people well. Its a trade off I welcome though. Bettter than someone who knows nothing but can tell you in a nice way! I find it helps to bring someone with me to my appointments, cause sometimes I get so frazzled I forget the questions and concerns I had at the begning.

Good luck! I dont wish that kind of pain on anyone! I hope it settlesdown real quick.

 

[Ashley]

Thanks Fog
I don't have any kids yet but from what I have heard from friends the pain does sound similar... eekkk
I am already on a super high dose of the Remicade (5 vials every 6 weeks and I am only 130 lbs) so I don't think that they will increase the dose or frequency much more. I am thinking about talking to him about adding an addition drug (not ideal but might be worth it) to see if that helps.

 

[Fog Ducker]

No prob.
Im only 170lbs I was at 4 vials and now at 8!

Ask about pairing it with an immunosupressant like methotrexate or others. My GI believes Remi works better when you have both. I dont really like being on all kinds of stuf but gotta do what you gotta do, right?

 

[Ashley]

Wow, just did some reading about methotrexate, that is sort of scary stuff!!

 

[uli]

Hi,
Even with Humira I seem to have the same spasms occasionally as you Ashley. My whole body shakes especially my legs and the result of the "effort" is usually close to nothing. Painful and annoying when it happens.