Feeling down ....

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ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/21/2009 9:04 PM (GMT -6)   
So it's been exactly 2 weeks since my surgery today and I'm recovering pretty well I believe.
My pain level has diminished but I am still taking some pain killers once in a while when I have moments where i can't stand the uncomfortable or painful feelings.

I have a wonderful wife and mother taking care of me ... yet I feel sad very often. I've been homebound for the past 2 weeks, which includes 4 days of hospital stay. I can't drive yet cuz I'm on pain meds and just not up to leaving to go anywhere just yet. I don't think I'm fully comfortable with the bag yet either. Nights I worry that the bag will leak, or I will have some leakage from "under there", which is quite embarassing. This whole thing has been such an experience. I went from doing almost EVERYTHING to just laying there and staring at the TV or the walls waiting for the day to pass.

My back pain is almost gone, but I have a very uncomfortable feeling once in a while in my tummy area. I believe the stitches are healing well, they are scabbing. Can the steri strips (the sticky things) come off now? Would it be ok to pull them off now? It's been 2 weeks ...

Also, I'm tired of the boring bland food I've been eating with the low-residue diet. Stripped chicken salad, mashed potatoes, cream of wheat are just not cutting it anymore. The nurse said I can start introducing some regular foods but I am scared. Any suggestions on what type of foods I can start eating now?

Also, I've lost a lot of weight. My belly is almost flat! I mean I'm not complaining at all but is it safe? I've been hydrating myself a lot but there is this pulling feeling in my belly when I reach upward or do my belly breathing. Could it be the stiches? I'm just being paranoid right?

I think I needed to vent, I cry almost every other day just feeling down. I know I am SO much better and already have my date set for my reversal surgery (June 3rd). I'm counting down the days.....

Just needed a shoulder to lean or and an ear to listen. I don't want to worry my pregnant wife nor my mom who's been SO strong thru this whole thing.

Thank you ....

pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 4/21/2009 9:17 PM (GMT -6)   
I sure hope you feel happier soon! It might take a little while to get used to the bag, but you will.
Its good you have good caregivers!

Feel better.
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.
If you want to know more, just ask me!
"Don't worry about failure, worry about the chances you miss when you don't even try"
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/21/2009 10:16 PM (GMT -6)   
The pullign feeling is your muscles goingback together. Its really annoying, lol.
Dont pull the strips off,just leave them be i know they are getting on your nerves, they annoyed me too.
You can eat stuff other than what you have been eating, you could have been eating stuff other than that all along! Pasta is good, fried chicken would be fine, hamburgers (just watch the onions, lol) fries, potato chips, ice cream, cake, candy, milkshakes, pork (stay away from BBQ and hotdogs for now), even pizza (just be prepared it may give you gas) I'm trying to think of other things you can eat but here's what to NOT eat, dont' eat any fresh fruits and veggies (cooked to smushy are fine), no nuts, seeds, popcorn, stringy meat (bbq, roast beef) no meats with skins, unless you take the skin off, like sausage or hotdogs. and you might want to watch spicy stuff, for the nexxt couple of weeks, they can cause gas. i would add one thing at breakfast, maybe throw in a banana, see how that goes, for lunch some pasta, see how that goes, for dinner a hamburger or something. Just one thing at a time. that way you can see if something is going ot give you trouble.
Dont' focus on the leaks, i know that is sooo hard to do. You may have som leaks at first, i did, it's one of those things it takes some practice to get exactly right. It wont take you logn though. Get some waterproof pads to sleep on at night, it will make you feel more secure and you will sleep better. then if you do have a leak, it will just go on the pad and no big deal!
Its ok to be laying around right now, you did just lose a body part, lol. Dont beat yourself up over that.
Keep thinking about that baby thats coming and what a better parent this surgery is gonna make you!
Hope you feel better!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/21/2009 10:16 PM (GMT -6)   
The pullign feeling is your muscles goingback together. Its really annoying, lol.
Dont pull the strips off,just leave them be i know they are getting on your nerves, they annoyed me too.
You can eat stuff other than what you have been eating, you could have been eating stuff other than that all along! Pasta is good, fried chicken would be fine, hamburgers (just watch the onions, lol) fries, potato chips, ice cream, cake, candy, milkshakes, pork (stay away from BBQ and hotdogs for now), even pizza (just be prepared it may give you gas) I'm trying to think of other things you can eat but here's what to NOT eat, dont' eat any fresh fruits and veggies (cooked to smushy are fine), no nuts, seeds, popcorn, stringy meat (bbq, roast beef) no meats with skins, unless you take the skin off, like sausage or hotdogs. and you might want to watch spicy stuff, for the nexxt couple of weeks, they can cause gas. i would add one thing at breakfast, maybe throw in a banana, see how that goes, for lunch some pasta, see how that goes, for dinner a hamburger or something. Just one thing at a time. that way you can see if something is going ot give you trouble.
Dont' focus on the leaks, i know that is sooo hard to do. You may have som leaks at first, i did, it's one of those things it takes some practice to get exactly right. It wont take you logn though. Get some waterproof pads to sleep on at night, it will make you feel more secure and you will sleep better. then if you do have a leak, it will just go on the pad and no big deal!
Its ok to be laying around right now, you did just lose a body part, lol. Dont beat yourself up over that.
Keep thinking about that baby thats coming and what a better parent this surgery is gonna make you!
Hope you feel better!

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 4/21/2009 10:38 PM (GMT -6)   
I'm glad for the most you are feeling well. You've been through major surgery, major trauma to your body and mind. Give yourself time to heal. Use this forum as a sounding board. Let your wife and mom take care of you (they probably need to as much as you need them). I think the tightening you feel when you stretch is your body healing. I know Bratcat had that feeling. It's OK to feel unsure about so many things. This is very new to you. And by the time you figure it out, you will have your reversal surgery lol!
Like summerstorm said, keep remembering that you're going to be a healthy parent for your child. Also remember that a lot of what you feel now, your wife will feel after she has the baby! Aches and pains from delivery, body fluids coming from many different places, hormones kicking into high gear. This surgery just gives you a taste of empathy for her!
I hope you feel better each coming day.
--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Mike B
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/21/2009 11:00 PM (GMT -6)   
I knowq Just how you feel it took me a long time to "get back in the swing of things" so give yourself time to heal and you'll by ok don't rush it.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/22/2009 3:48 AM (GMT -6)   
I'm just going to say "what they said" because they are right! It takes time...you ARE doing wonderfully for being two week out, hang in there!

Definitely DON'T pull the steri-strips off...that just causes more pain/problems...if they start to peal up, cut that part off...the part that is still sticking has a will of its own and will scar your skin if you try to take it off now!

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/22/2009 5:29 AM (GMT -6)   
Ditto to everything that has been said--- Everything you are feeling is normal. I went through that sadness feeling right around 2 week post surgery. I think it is the realization that you have lost something and now will deal with a new normal. You will feel better and you will get used to the bag- trust me. I thought there was NO way I would get used to it. I have a young friend with Crohn's and she had an ileostomy for a yr. She really helped me a lot. She told me how she hated it at first but then it got to be part of her routine. I don't love it by any means, but I know that it is temporary and there are good things about it too.

The stomach pain is normal too.
By the way, I am eating almost everything at this point. I have gained weight back- not that I needed to. I don't eat popcorn or nuts and really cheew everything. I even began drinking soda once in a while.


PLease know that you are not alone and that the even the crying is part of the process. I took Xanax for about two weeks and it helped. Now I am ready to go back to work-----
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

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


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 4/22/2009 6:54 AM (GMT -6)   
You're right on track! wink You've just described my first two weeks (I'm at the end of week 7). I echo all said here. GLAD you have an appetite so add in those foods summerstorm listed a little at a time. As OHIO76 assured me, I assure you, it's OK and normal to be sad. Do you have some family visiting? Even though I am 37 my parents have been visiting once a week and stuff the fridge and freezer. My brother has been visiting once a week to get me out to the grocery or to lunch, do some errands around the house, etc.. My in-laws have been coming to cook a meal and keep me company. It has helped my emotional state immensely. I thought I'd have read a zillion books by now--but it's hard. I'm so preoccupied with what I should do to be well and worries about the bag, etc.. Like you, we are all getting used to our "new" bodies. Good luck and know you are not alone!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/22/2009 11:13 AM (GMT -6)   
Gosh.
You guys are awesome. This is exactly what I needed to wake up to this morning. I wake up very tired, dehydrated and hungry. However, I just don't have the energy to get out of bed to eat or drink any water! I'm quickly getting over that tho.

I had cereal this morning :-) Going crazy for Cocoa Krispies! With some banana as well .. not too much. I'm feeling good so far, a little nauseous but not too bad. I walk about 5 rounds around the pool twice a day.

I'm going to try and have pizza for lunch today. Plain cheese pizza .. gosh ...mmmmm the thought of it makes me salivate!!! I don't like watching TV cuz I see the KFC and Taco Bell ads on tv and all I want to do it jump in my car and go get some when I know I can't :(

This board has been amazing .. I wish I could re-pay you guys in some way.

Last question ... I tried the Hollister wafer and bag with the paste. It was extremely itchy!!! I mean REALLY bad. The nurse came yesterday and helped me change it and I decided to put on the one they gave me at the hospital before I left. These are SO much more comfortable. I mean, they don't feel as secure, but not as itchy and tight. It took me almost 25 mins with the little glue remover to take the Hollister wafer off!!!

I'm wondering where to order these bags from .. the ones from the hospital. I'll call the stoma nurse and try to find out but in case you guys knew or can recommend any better ones from EdgePark?

Thanks !!!!

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 4/22/2009 6:30 PM (GMT -6)   
The bag you have on should have a name and number on it (ie. hollister 88400 or Coloplast 15521). If you call your insurance company, they might have a distributor they prefer or deal with. I tried my 4th type of bag this week--it's a journey, eh?

Glad you are eating. For the first 6 weeks (ie. up until this week), I had to eat every 2-3 hours. I was sleeping in the guest room and would call my husband on his cell phone. He'd go downstairs and get me an eggo, a plain muffin, toast and butter, pudding, watered down oj, powerade etc.. After a while, I realized I should keep a few items near the bed so I could "Serve myself" (arrowroot cookies, waffle cookies, social tea biscuits, pretzels, or pita chips) because sometimes I just needed a little something. My visiting nurse even suggested a cooler with oj or powerade. If you're hungry, EAT!

Right now, I have 2 bottles of water, one pack of waffle cookies, and a few dum dum lollipops near the bed. I get up to change the bag and drink water which is helping me from being dehydrated. Also, I usually eat a little something before going downstairs for breakfast.

How did you do with the pizza?
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/22/2009 7:26 PM (GMT -6)   
lol sammies, i wish i had thought of calling people when i needed something. My husband laughs at me now cause i text him things from the other room.

You could get a small dorm fridge and keep juices and stuff in it.

Yeah i am wondering how the pizza went, my first pizza experince wasnt that great, hope yours went better!

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/22/2009 7:30 PM (GMT -6)   
ex uc-
didn't the stoma nurses order stuff for you? Dr. Weiss's nurses made the first order for me with the company that my insurance accepts and gave me the info so I could then order later. I called the company anyway to double check on the order and got the supplies within 1 week of coming home from the hospital.

I use the convatec 2 piece opaque bags. I find that the opaque bags help me deal with the ick factor. I feel better emotionally since using these.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 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 4/22/2009 8:00 PM (GMT -6)   

ex.uc-kp    you are doing very well.  Your payback is just to heal, stay healthy, enjoy your new life to the fullest, and then "pay it forward" ... just post your help and suggestions!  

jblue   I also use the 2 pc Convatec opaque bags.  That is what I was sent home with almost 25 years ago and still use them.  I really like them and have tried others on occasion, but always come back to these.  I guess it's just what I got used to using.

I have a bottle of water in my nightstand drawer always.  That way, I don't even have to get out of bed if I wake up thirsty in the middle of the night.  I know it's not cold, but I'll sacrifice that if I don't have to get OUT of bed to get it!!!!!  Seriously, I also leave my xanax in there in case my mind is racing and I can't get to sleep.  Just roll over, open the drawer and there it is.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/22/2009 8:54 PM (GMT -6)   
What a day! I MADE my own pizza and then had TWO slices :-)
Granted it was only cheese pizza but what a change from the mushy mashed potatoes and what not! Ughh.

I felt ok after it ... a little acid reflux but took a Pepcid AC and am feeling great so far.

Now I dread sleeping, or trying to sleep, I'm out of the Ambien the doctor gave me and have to sleep on my own now. I am extremely uncomfortable in bed as I used to sleep on my side and now I have to sleep on my back! If I roll on my side I get all crampy in my lower back. It's getting better I think. I walked about 10 rounds around my pool today too .. so I'm looking forward to tomorrow being as good as today. I have yet to have 2 consecutive good days! Fingers crossed!!!!

I spoke with the doctor about anal leakage and having "regular" bowel movements. They did remove my rectum and my colon and he said it was normal to have the urge to go t the bathroom and have mucus and blood come out. I've noticed that more and more mucus and blood is coming out and was wondering how long this lasts for? Anyone experienced this?

Jackie: The stoma nurse was awesome. She sent me home with some pre-cut wafers, bags (clear and opaque), eakin seals, scissors, a small mirror, the works! She also put in an order for me with EdgePark and I did receive it. I tried the Hollister bags and wafers and they caused me to itch like crazy!!!!
I switched back to the ones I got in the hospital and now I only have 2 left. I'm going to look thru the EdgePark ordering guide to see if I can exchange or order the right ones for me.

Time to bed ... oh boy .... :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/22/2009 9:32 PM (GMT -6)   
YAY i am so glad you had a good day today!
You will be able to sleep on your side or tummy soon.
I will keep my fingers crossed for you havinga good day tomorrow!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/23/2009 5:42 AM (GMT -6)   
You can only return unopened boxes...I've done it many times after thinking I liked a brand/style, ended up hating it and going back to a Convatec two piece! Just call them and they'll let you know what to do.

Hang on...you'll be able to sleep on your side again SOON!! Some of us even sleep on our stomachs:)

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/23/2009 8:36 AM (GMT -6)   
Ex uc-
you are doing very well. Keep walking- I know it makes me feel better.

The back pain/cramping will stop. I had it too and thought it was weird, but it went away after about 10 days.

I am glad you had something good to eat. I am enjoying eating again... even though I really need to lose weight. I hope that once I am completely the prednisone, i will lose some of that weight.

I am down to 5mg. and feeling grumpy, irritated, headachey and sick. Oh well! I will be off of it within another week after 7 months of that crap.

As far as having good/bad days. I would have 1 good day and then 1 or 2 bd days and then it started being fewer bad days and more good days. Now I have all good days...... You sound so much like me and what I went through.

It is good to know I wasn't hallucinating all of those bad feelings and weird pains. smilewinkgrin

Take care :))
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

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


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/23/2009 1:07 PM (GMT -6)   
Yeap the prednisone is definitely a wonder drug eh ? :-)
It fixes things in a jiffy but screws up so many other things!

I've been pensive recently. Thinking about whether or not this was the right thing to do or not. Whether I was really THAT bad that I had to get the surgery. I read a bit more about the takedown and how long it's going to take to recover from that surgery. I'm finally starting to feel a bit better from this one, I don't want to have the bag on me but the thought of anal leakage and having to rush to the bathroom 20 times a day initially scares me :-/

I mean, I was sick before and the prednisone used to "fix" it. I ate anything I wanted, I did have problems and was bleeding and such tho .... My mom and wife are trying to be as positive as possible right now. They say I look better than I did before my surgery already. I have not even recovered completely yet. I have not even shaved since my surgery!!! I'm still tapering off my prednisone too and am on 15mg.

I have an appointment with the stoma nurse tomorrow, she called me back today and recommended I come in and make sure everything is ok. She also said the mucus and the blood is normal and the frequency is normal as I am coming off my pain meds. Pain meds apparently cause the bowels to slow down.

I have to now figure out what I have an appetite for!!!

Oh ... and I had bought one of those long pillows for my wife for her pregnancy and I'm using it :-) I got to sleep on my side last night!!!! Woke up with some aches and pains tho :-/

ta !

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/23/2009 3:45 PM (GMT -6)   
I don't know what meds you tried, but if you needed pred to keep you in control than you were not in a good place. As you know, you can't keep taking prednisone for an extended period of time.

I think about what the jpouch will be like- trust me, I am worried too. Lots of horror stories about jpouch problems. Dr. Weiss says that there is a very high percentage of success for jpouch surgery- something like 95%.

WHy can't we be part of that 95%?

Remember you are just 2 weeks post surgery. Give yourself a break.... tongue
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

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


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/23/2009 3:48 PM (GMT -6)   
I don't know what meds you tried, but if you needed pred to keep you in control than you were not in a good place. As you know, you can't keep taking prednisone for an extended period of time.

I think about what the jpouch will be like- trust me, I am worried too. Lots of horror stories about jpouch problems. Dr. Weiss says that there is a very high percentage of success for jpouch surgery- something like 95%.

WHy can't we be part of that 95%?

Remember you are just 2 weeks post surgery. Give yourself a break.... tongue
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

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


chelebel
Regular Member


Date Joined Mar 2009
Total Posts : 26
   Posted 4/25/2009 1:07 PM (GMT -6)   
Hi ex.uc-kp

Good to hear that your surgery went well. I haven't been on the site for a while, I am now 3 weeks post-op and am feeling so much like you, I was beginning to worry about how I was feeling, but after reading your post is seems its pretty normal. I have been recovering well, had 10 days in hospital, had open surgery but wounds healing really well. I thought I would cope so much better than I have with the bag, but the thought of changing it freaks me out everytime. Having problems with the seal due to big dips either side, so little bit of trial and error going on there and my skin is beginning to get kinda sore. Also the food, I too feeling very anxious about what to eat and have been sticking to bland mashed foods and white bread. Getting to that stage of whether or not I am going to be able to enjoy my food and feel normal ever again ( I know its early days, but its a struggle sometimes). I didn't realise that I would have back pain, but that seems to have been easing off, I was using a heat pad for it whilst in hospital which really helped.

Got to go back into hospital on Monday to try and get my catheter removed and hopefully my bladder will work this time!

Anyway sorry I have had a wee vent, didn't mean too. Hope you are doing well now and feeling a little more yourself. June 3rd will be here before you know - good luck for that x
Panproctocolectomy scheduled for 3rd April.  Diagnosed Ulcerative Colitis 18 years ago.

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