How long before the pain eases?

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andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/25/2009 4:30 AM (GMT -6)   
Hi All,
I hope you are all well :-) . I had a proctocolectomy done on July 30 and I still have a sore butt. Also bleeding and stinging quite a bit, I thought by now it would have been all good so was hoping you could all let me know how long it took before you felt ok after that surgery. I also am happy to now have an ileostomy as it has helped my quality of life but since going off all the meds I was on for the crohns/colitis my joints and eyes have been giving me hell, I am back on methotrexate for my joints and steroid eye drops for my iritis and as soon as I stop using the eye drops it comes back again, I am so frustrated and find myself in tears so often wondering why this wont let up. I even have down times to the point of not wanting to be here anymore, my doc put me on patches for pain but I find they make me very sleepy so I dont use them and just try to deal with the pain myself. I have also been given a referal to see a counsellor but have'nt called to make an appointment yet, I do know I need to but I dont know that I want to chat with a perfect stranger about this, at least on here its not face to face. I get so angry at myself for letting it get to me and not being stronger but dealing with this disease for the past 21 years has taken its toll. I am back at work and love it but get tired so fast. Will I ever feel good again? I seriously can't remember when the last time was. Sorry to be such a misery guts but need to pour my heart out somewhere. Thanks for listening, take care

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/25/2009 4:57 AM (GMT -6)   
andorable...PLEASE make an appointment with your counsellor...just remember, they won't be a stranger after the first session! Could your doc prescribe an antidepressant to get you through this difficult time?

To be honest, when I had my proctocolectomy, it was a good 3-4 months before I felt like my self and got my energy back. It was MAJOR surgery that you had and your body has to adjust and heal. Give yourself time. I had a lot of joint pain before my surgery and it did go away for me, but it took time, it wasn't an instant change.

Hang in there we are here for you

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/25/2009 12:15 PM (GMT -6)   
Andorable I wish I could hug you and make you feel better. I had a proctocolectomy on Aug. 4th and feel the same way you do. I am asking myself the same questions and hating life at the moment. I don't like this bag yet, but hope I can get something that fits and doesn't hurt all the time.

I didn't want to take so many drugs but I am still on pain pills to help heal. I got told the body has to fight too hard if it's in pain. It won't heal like we want. This is an autoimmune disease and so we have to change the things we can, to take good care of our body and mind. I haven't figured out how yet, so really I don't have any great advice, just thoughts that are roaming around in my head. I am trying to reshape my behaviors and attitudes.

I take soak time everyday for my bum, sometimes twice. A bath and then just a bowl with epsom salts in. I think that helped the stitches down there. It's still tender but I actually rode my bike yesterday and felt OK. (just a little tender)

My joints and eyes are giving me grief right now too. I think I need to get new glasses, again. They itch and ache too. May have to talk to my Dr. about eye drops. I heard they can improve but it goes back to-are you going to take care of that autoimmune disorder or go back to your old way of life? I really liked my old way of life in lots of ways and it's hard to change old habits and relationships but I want to try to do my part in this recovery. We sure all get different situations. I want to get healthy again.

Why fight the sleep? That is the best time that your body recovers? Get as much as you can. I took the advice of this forum to walk lots and sleep lots and that has helped keep me sane. I have a goal to get out each day and take a loop of the neighborhood.

I think the counselor is a good idea but don't do what I did and talk to someone who knows nothing about what you have been thru. He asked all these questions on what it was and how they do it. It felt weird to have to explain to a Dr. even if he is in a different area of expertise. They have specific therapists who deal with people in our situation. I am going to find one of them.

"Will I ever feel good again?" I ask those exact words!! I told my GP yesterday that I still feel worse than before the surgery, and he said it all takes time. I didn't like the answer but I know he's right. Worry is very counter productive so try not to do it. I decided to be thankful I can sleep in now that I have no job, even though I miss my job and stuff. I am try to keep a positive list, so if you have some to share, I 'd love to hear them. My list keeps getting over shadowed by my negatives.

Truely hope you get things worked out. I ditto OHIO76's last comment "HANG IN THERE, WE ARE HERE FOR YOU!"

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/26/2009 6:08 PM (GMT -6)   
(((BIG HUG))) Andorable, it will get so much better, I promise!

I was out of work for 3 months after my proctocolectomy, because at 7 weeks post-op, I ended up with an infection in the area where they removed my rectum. It hurt/stung really bad, so you should definitely have your surgeon take a look at that to make sure that isn't what's going on with you.

While you're there, ask them for a different pain reliever (like Vicodin). For me, it took the pain away and pepped me up.

I had to pack my butt wound for about 6 months before it completely healed up, which was frustrating, but once it was over, it was totally worth it! My surgeon told me that Crohn's patients heal slower than others.

Also, make sure you're taking sublingual B vitamins or getting B12 shots. It's very common for those of us with ileostomies to have poor vitamin B absorption, which is a natural mood enhancer. So is St. John's Wort. :-)

Hang in there, take time every morning to count your blessings, and know that we're here for you!

Love,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/27/2009 3:17 AM (GMT -6)   

Thanks all for being there for me I really appreciate your advice and kind words. I am already on antidepressants but feel they dont help much I still get very down but I will get motivated and make that appointment with the counsellor very soon, I know I need it badly. I dont have an appointment with my surgeon until next month so perhaps I need to get my regular doc to take a look at it for me cause the stinging is awful, but Im on antibiotics at the moment for a sinus infection so I would have thought that would fix any problems I may be having down there. I think I also went back to work too soon, I really am a bad one for overdoing things then paying the price later on, but I truely hate sitting around doing nothing, or at least thats how it feels. I have no idea what vicoden is as I am in Australia and maybe its known as a different name here but most of the pain pills they have given me in the past are all narcotics and I feel doped up taking them. Thanks again for your help

Take care


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/29/2009 9:42 PM (GMT -6)   
Andorable,
If you can get in to see your surgeon sooner, please do, because an infection in the wound area can be dangerous, as it can get into your bloodstream. The wound area shouldn't sting, and mine did only when it was infected, so that's why I'm concerned.

They say it can take antidepressants up to a few months to start working, so keep taking them, and they will hopefully start working soon. If you can get outside and take a walk a few times a week, that might help, too.

Vicodin is made from acetaminophen (like Tylenol) and comes in doses of 500 or 750 milligrams. If you don't like prescription pain relievers, you can always take over the counter Tylenol for pain relief. Again, please try to get in to see your surgeon, so he can take a look at your surgical site.

Take care,

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

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