Getting Close to Normal!

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ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 4/6/2009 3:24 PM (GMT -6)   
OK, so its one day shy now of 3 weeks since my colon was removed.  The last few days have seen some big improvements and I guess I am sharing as it gives me a boost to tell people who understand/have been through it.
 
 
Thursday night - had my first visitors round to see me at home.  Was a little shy about seeing people after the Op but 2 of my friends popped in with some shoping for me.  It really did cheers me up.
 
Friday Lunch - another friend from work popped in to see me at lunch time.
 
Friday night - had a chinese takeaway at home with my best friend!  It was a very basic rice, chicken and sweet/soure sauce thing but tasted good!!
 
Sunday - Went out!! Yay!!  had lunch at my dads house which was really good to get out of my house.
 
And today (monday) - one of the biggest things for me to do - get in my car and drive myself round town this evening :) I feel free now I feel strong enough to drive again. (got to watch out for the bumps in the road - ouch!!)
 
Got a good balance of meds going helping hold off the pain and inflammation.  I am starting to feel normal again!!
 
Still got some major issues with the stump that is left which is keeping me on a high dose of steriods but I am hoping something will be able to get done about that. 
 
I feel like I have got some Rocky type training anthem playing in my head!  Eye of the tiger and all that!!!
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions
No Joy!
 
Colon Removed 18 March 1:30pm!
Ileostomy
Option for Jpouch but have not made my mind up yet!


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/6/2009 5:56 PM (GMT -6)   
Elli
We had surgery about the same time...

I had surgery 3 weeks and 3 days ago. Everyday I feel a little better even though I have had some setbacks. My skin around the stoma is irritated and it is hurting. My other lap sites are still healing. I think these are taking a long time to heal. The longer bikini incision is healing better.

I just took my last pain meds a little while ago. Tylenol does nothing for me. Are you still on pain meds? Which ones?

I am getting the hang of changing the bag. TOday it only took me about 25 minutes . The first time it took me an hour because the stoma was very active. I have learned when the best time to change is...


Are you still in pain? Where? I am curious because I am afraid I am still in too much pain for three weeks.


I know what you mean about the speed bumps and the ditches in the road. Ouch!
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/6/2009 7:42 PM (GMT -6)   
It is good to hear you two comparing notes.. your surgeries were so close and all. You are both doing wonderfully. One day at a time.....
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 4/6/2009 10:10 PM (GMT -6)   
Hi Jackie - good to hear from you.

Yes I am still in pain! Its just got half past 4 in the morning here in the UK and I have just made a hot water bottle to rest of my right side. The biggest pain I get is on my right side below a site where they cut into me. Not sure if it is small bowel or muscle. Its like having a really bad stich after I have been running too hard. I have had everything shutdown a couple of times for 5 hours, but coffee seems to bring it back to like. Hope that stops happening as its really painful when it does.

The rest of my sites are OK-ish. The one through my belly button is a little ***** now - think I need a trip to the doc to get that sorted.

I am on paracetamol (2 500mg) every meal time (3 throughtout the day) and declfanec - again the same dosage. I am also on prednisolone 10mg in the morning and 10 in the evening. whether i think i need one of those doses at the time i take it anyway. I have always been told the best pain management is prevention. The Declefenac is an anti inflammetary pain killer. I had to go back to the doctors last week to get more of this as I was in agony.

I still have very rough days like tonight. Havent slept yet all night so I know tomorrow is going to be hard. Its still taking me a huge effort to get washed and showered but I am finding I can fit other things in the day now with that - such as the things i mentioned above.

Change bags still takes a bit of a physiological build up. It was the first thing i mastered the second day after the Op. I knew my stay in the hosp would come down to how quickly I could manage myself so on the second day I changed myself. It takes me around 20 mins to lay everything out, take off, clean, dry, knew one on. A little longer if I need to shave the area. I change every 2 days whether I think it needs it or not. I am not going to be one of those people to really push wear time - I need the confidence in the bag. When I got itchy after one day I changed even though when I did it all looked pretty clean. Good washing around the skin is something I am hoping will help with the skin. I am not using any other products at the moment other than the glue that is already on the bag. Its funny that we both timed ourselves on the change. I guess I just wanted to know how much time it will add to my day! 20 mins to deal with the actual stoma every 2 days is not so bad.

My general feeling is one of sorness etc. Still having to push myself up with my arms, sort of side ways roll out of bed etc. I think the last few days have been more of a mental boost rather than a physical one. I was feeling very shutin etc (I live on my own).

The first couple of weeks seem to have been a discovery of lots of new problems. After being ill with UC for so long i thought i would walk through this. Its not been the case. Lots of new problems to deal with. I guess the good thing about it all this time is its more a last final struggle. I know i will need another surgery at some point to address the stump, but its a final feeling of this is the last time I am going to be up in the middle of the night with tummy pains etc. I am trying to stay very positive about the whole thing. I have had a lot of time to mentally prep myself for this and I am focussing on 2 months down the line.

Think of youself hooked up to all the drips etc in hosp and now look at yourself - I am sure you can see a big difference. I think patience is what is needed - not one of my strong suits! I am trying to let it all wash over me - some days are harder than others.

How are your spirits? Are you feeling low? Try and stay positive - the biggest battle is mental I sm sure.

Wow, didnt mean to ramble on so much so early in the morning!
Elli.

Thanks Peggy - this site is great. I check in throughout the day - really great people on here.
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions
No Joy!
 
Colon Removed 18 March 1:30pm!
Ileostomy
Option for Jpouch but have not made my mind up yet!


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/7/2009 7:12 AM (GMT -6)   
wow- I relate to everything you said. I am much older than you and feeling it... I thought that is why I wasn't healing quicker.

As far as my spirits, the day after I got home from the hospital I started experiencing anxiety. I have a history of anxiety and depression even though it has been under control for several years.

I think it was the realization of the magnitude of everything- the permanence of it all and of course dealing with the BAG....

I called the doctor and got a prescription for Xanax- an anti anxiety med.
It has helped considerably.

I am going for the jpouch--- I will have to have two more surgeries, though. I will find out more APril 20th when I see the surgeon.

Today, my husband, kids and I are going out to lunch for the first time. It is Spring Break from school and my husband is taking a weeks vacation.

The weather here in Florida is in the 70's and wonderful.....


Let's keep in touch---- We can share our progress.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/7/2009 7:31 AM (GMT -6)   
elli-once you have been doing this a little longer, it wont even be 20 minutes, i change mine in 8. that includes gettng everything laid out and cleaned
You will also probably start getting more wear time out of your bags. Once you are a little more comfortable with it.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/7/2009 6:44 PM (GMT -6)   
ElliUK,

"Its funny that we both timed ourselves on the change. I guess I just wanted to know how much time it will add to my day! 20 mins to deal with the actual stoma every 2 days is not so bad."

WOW!!! Would you have ever thought that you would be saying this so soon after surgery?! Good for you! How many hours a day were you in the bathroom with your UC? Even with the frequent (probably ?, since you are still so soon out of surgery), painless emptying of the bag throughout the day, I would bet that you have a little bit more free time on your hands.

" I think patience is what is needed - not one of my strong suits!"
I am so glad that you said this --- well, at least realize it, and don't get so upset with your recovery. It is really hard when you are NOT the patient sort of person to learn to think differently. Be kind to yourself and just remember .... a little patience now will pay off big in the end. You don't want to overdo it and have any setbacks along the way. Sufficient exercise (walking) is indeed important to help build your stamina. Just know when to stop. (I wasn't a real patient person either ... I have learned!)

You'll have to keep us updated on your "journey".
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/7/2009 6:58 PM (GMT -6)   

Elli,

I'm happy that you're doing so well! That's great that you and Jackie can support eachother as you both heal from surgery. Now, I've got the Eye of the Tiger song going through my mind! smilewinkgrin


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

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