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Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/13/2009 10:35 AM (GMT -6)   
Hi everyone. I can't tell you how much I have missed this forum. Have thought of you often and wondering how your summers went. I was not around computers much for the last few weeks and it seems like forever. Wow modern technology is great!!

After 3 weeks from surgery my friend who is an OR nurse came to take care of me and we went to a family cabin in the mountains. It was beautiful and quiet when others weren't there. One weekend there were twenty people and it was kinda crazy. It all made me a nervous wreck. What's with that?

After they left,I went for walks, had blended food, slept and read. It really was idellic. So the nurse got to me after oh..three days. She stayed 2 1/2 weeks.

She is my best friend but I wanted to walk and she would say she couldn't go any further. Not sure if that was for me but decided it was because she is so out of shape and has bad feet. Is 2 miles that far? You are always hearing walk, walk, walk, and so I have. I couldn't do any hikes that I usually do (10-15 miles a day is a fun time day hike for me, when well) and I was itching to be out in the nice weather. Felt rather like a caged animal. Again, nerves got to me. I feel crabby and short tempered. I am not usually like this. Should I go back on the Effexor I took for a while before the surgery? Don't really want to but...

Oh Surgeon left one staple in my bum and had to go to ER in small town near by to get it taken out. Also had low grade bladder infection so got antibiotics for that.

SO it's 5 weeks and I am still rather miserable. I ache in my back and mid section, around my stoma burns like razors are slicing at it. My stomach hurts when I eat very much. Am afraid of foods I have to chew too much, so I blend everything. The bag has fallen off in my sleep and this is just not fun. Someone said they leave the stoma open to the air for a while before they put the new flange on. How long is enough?

I read about the fold around hole and need to look into that. My stoma is 1 inch and then has a little bump on the side. Don't know whether to cover it with paste or cut around it. It hits right at my pants waist line. Why does bag have to go above the stoma? Are there any that don't?

I have been using Holllister two piece system but want to try some others. Big bag hangs half-way down thigh and little bag is hard to point stuff in right direction. I have resorted to kneeling in front of toilet with seat up and emptying out stuff and then with squirt bottle rinsing until water is clear. Then wiping edge so none leaks out when I close it. Both clip and velcro(fold up) dig into my leg at times and make marks. Man I am not well adjusted. Everyone in my family want me to go back to my normal cleaning, cooking and being happy and I am NOT. Clients want me to start training them again. Wish I could do what I tell them to do. I liked being in good shape, as a posed to now.

Sorry to come back and be a downer. I am just not copying very well. It's so hard to smile and be nice, feeling lousy and knowing it's suppose to be all better now.

I love reading how well you all are doing and how positive you are. I keep praying I'll get there too. Not sure if I should even send this whinny thing but if you have suggestions I could sure use them. God bless you all. I truely admire your determination and sharing hearts.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/13/2009 11:03 AM (GMT -6)   
Well for someone who has bad feet 2 miles is pretty far, and if its just been five weeks, walking that far at one time is probably adding to your back pain.
THe back pain comes from, even though you probably dont realize it, when you walk you are leaning forward to compensate for the pain in your stomach, and since you had your bottom done, you are also sitting funny.
I had pain in my back for months, and funny feelings around my stoma for about 2 months.
You reall dont have to blend everything though, i dont, just chew it, and drink LOTS of water if you eat sometihng like fresh veggies, esp until you have had your bag for a while.
When it fell off at night, did the bag itself just pop off, or did the wafer come off too?
If it was the wafer too, try using the hair dryer to heat it, if you are still using skin prep, try not using that, that will give you better wear time.
If it was just the bag, make sure you check it sometimes and make sure it is clicked on good. I am sooo OCD about it, lol. Also, i tape the top of the bag to my stomach, which keeps it from hanging down, and then it feels better on me. As for the tail digging into your leg. this is hard to explain, but take some tape, and when you have it folded shut, use medical tape to cover all the plastic, dont tape it shut though, lol. That makes it softer and it doesnt hurt as much AND its much easier to close that way! As for emptying it, i just sit on the toilet and point it in there and empty it, i dont mess with rinsing it and all.

As for going back to your normal routine, as hard as it is, if you can get back into it, you will start to feel better, although i dont suggest the 15 mile hikes just now,lol.

Hope you get to feeling better!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/13/2009 12:45 PM (GMT -6)   
Trigirl---5 weeks is not a lot of time post op...give yourself time!!!! As a 'pro' to abdominal surgeries, I thought I would sail through my proctocolectomy and I was basically couch bound for 12 weeks shocked Like summerstorm said, you are compensating in ways you don't realize. Your body needs time to heal, and while walking is great, two miles is A LOT for someone who had surgery 5 weeks ago. My walking was to the bathroom, to the kitchen and IF I was lucky to the mailbox...enough to keep the body moving, but not too much to tire me out (my opinion was I needed more strength to heal).

Your body will tell you when it is ready for the heavy duty stuff...don't punish yourself until that happens.

As far as the nighttime issue, I ditto summerstorm's questions...wafer or pouch came off? And, the pain around your stoma, have you remeasured? when a stoma is new it can shrink a lot and if you are using an old measurement, it may be too big now.

You may find another brand might work better for your body, call around for samples. I'd suggest the Convatec Durahesive Mouldables that way you don't have to worry about the little bump (it just conforms all by itself). It is kind of trial and error skull I used to use medical tape and tape the tail up, then tuck the pouch in my underwear...now I just tuck up the tail under my underwear...lazy, I cannot be bothered with tape (but it's been 10+ years!!) :-)

Oh, and for the blending - don't - just enjoy your food:) your body will be okay as long as you aren't swallowing whole walnuts or anything...focus on enjoying things that used to cause pain! You may just need small amounts until a little farther postop.

Here's a (((HUG))) to get you started!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/13/2009 2:28 PM (GMT -6)   
Thanks you both for the comments.

I didn't know what was good enough and now I think maybe I won't push so hard to get further.

It's the bag(pouch) itself that comes off the flange. The whole thing is right on my pants line and so if I'm not careful it can flick open I guess. I haven't been using skin prep, just the adhesive cream around the edge of cut. The stoma (named it "Bubbles") has gone down in width quite a bit. Now it's 1 inch. But it sticks way out and feels like it rubs on bag sometimes. I will try to tape the bag on and see if that helps because it feels like it is pulling skin all the time, even when there is nothing in it.

Those mouldable appliances sound great! I will phone about that tomorrow. Missed getting there on Sat. afternoon by 7 min. and really wanted to get something different to try. Know my adventure is for Monday.

The blending does make eating easier. I ate grapes and thought for sure I had blocked it up, and was pretty scared for a few hours. I am trying to drink 3 to 4 liters of water and juice a day but man I feel like I'm urinating all the time. Is there some trick to having water go to proper place. I like the output runnier rather than thick as mashed potatoes, that has to be squished out. OK this is gross, sorry.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/14/2009 5:10 AM (GMT -6)   
Have you tried coffee? I know its not all that healthy, but it does get things moving if you need it to!

Don't feel bad about grapes...I eat everything, and I mean everything, but I will only eat grapes IF I peel them and only a few at a time...needless to say, I don't have the patience:(

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/14/2009 9:00 AM (GMT -6)   
Peel the Grapes!!! How much work is that!?! wonder how they are blended up?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/14/2009 1:29 PM (GMT -6)   
oh you dont have to peel them, just squeeze them into your mouth!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/16/2009 9:48 AM (GMT -6)   

TriGirl-

I really feel for how you are feeling and if you look back I was the same way. I am just not 5 months post-op and still at times seem to have days that are bad and days that are good. I grieved for a long time and it completely affected my life in every aspect. I did have to go on an antidepressant and it helped. I am off it now and wondering if that was a good idea. I have a nasty stoma which accounts for a lot of my recent bad days. Mine is retracted and so small a wafer will not stay on and I have leaking, skin breakdown, and skin infections. It has been this way for a few months and with trial and error If I were you I would try a new appliance. I tried the Convatec durahesive moldable. It forms a turtle neck around your stoma and if yours protrudes this would probably work well for you. The bag is opaque and aomewhere in the middle in size between the min and reg hollister bag.  I hope you can find something that works better for you.

As far as back and belly pain I would try easing up on the waling a bit for now. Your body is healing and recovery. Walking is important, but maybe your overdoing it a little. I swear by my heating pad still....on my belly and back. I also went to a chiropractor and found out that I was severly crooked from over-compensating for my belly.

I still have days of anger and frustration and I felt just as you do. I went on meds for 3 months and I have stopeed them and wondering if this was the right decision. I am still easily irritated and emotional, both which are not characteristic of my personality. Please let me know if you ever need to talk.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Reversal scheduled- Sept 28, 2009
 
"The Greatest Healing Therapy is Friendship and Love"


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/16/2009 6:33 PM (GMT -6)   
Thanks Lizzie for replying.

It is great to know I am not crazy. I don't want to be mourning, but I guess really I still am. Yeah my life is completely affected too. I can't even hang out with most of my friends because they are so active and I can't be like that right now. My house gets messy and I can't clean it and no one else cares. I have turned into this agitated, unhappy person. I want to change this downward spiral. I try to think positive and know it's a phase?

After reading about the moldable wafer, I went to the health store and ask about it. They said I had to go back to the ET nurse to get it OKed. What a pain, but if I want to have some amount paid for that's how it works here.

I will try the heating pad tonight. The stick-on heat things work for a while during the day.

Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 9/16/2009 7:29 PM (GMT -6)   
Trigirl said...
They said I had to go back to the ET nurse to get it OKed.
Try giving them a call first.  I talked to them today and they called in my order without me actually having to go in.  I'm going from using Hollister with a good stoma to Convatec with a stoma that my own surgeon told me I'm going to hate.  He's right.
 
Good luck!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/17/2009 4:35 AM (GMT -6)   
Trigirl--don't bother with going back just for that...do you order from an online company? I'd either call Convatec and ask for a sample (they'll send several wafers and pouches) or another supplier. They can confirm with your doc's office, if needed. I've tried several different brands/sizes/types without getting it ok'd by my WOC Nurse. It's probably just that store's policy.

You are healing, so give yourself a little time and before you know it you'll be out and about doing all the things you used to! Just remember this is healing and your body needs your mind to get through it...the mess isn't permanent so don't let it get you down nono when you are farther along you'll get it back into shape!
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