I'm officially an OSTEOMATE

Hi everyone

Just thought I'd log in from my hosp bed to update you all! Well I finally had loop ileostomy on Tuesday, day 5 today and despite few respiratory complications am recovering well. I was fortunate to have op done laparoscopically although surgeon didn't know whether he'd have to do open until I was on table. They removed my sacral nerve stimulator too and confirmed that most of small bowel in pelvis was adhered to wall so they did extensive adhesionlysis too. Couldn't reach all of adhesions so not sure whether remaining ones will cause problems. Small bowel above ileorectal anastamosis was dilated 10 x what it should be and looked bigger than what large bowel should be!! No wonder radiologists kept reporting with all my X-rays with all sub acute bowel obstructions that large bowel present and dilated!! Not that I even have a colon, it was all removed 7 years ago!!
Small bowel was, apart from adhesions and dilated, was also twisted! No wonder I've been battling so much recently!

Anyway on bright side I'm looking forward to eating solids again as haven't done so in 7 years. Yay and excited not to have to do bidaily bowel washouts.

Bit emotional today when the Sr changed bag for first time and saw the stoma! Got quite a shock as it's much bigger than I thought, swollen and dark red! Just need to get the hang of it and take baby steps everyday and just take one step at a time. Next challenge will be going home tomorrow or Tues and managing the stoma on my own. Fortunately I have a wonderfully supportive husband and 2 very understanding daughters!!

Thanks for all your advice leading up to my ileo, support was so encouraging

Still smiling
Lolly

Great news and great to hear you sounding so positive. The stoma will go down in size as the swelling reduces but it can be a bit of a shock when you first see it poking out of your stomach. It will soon become just 'part of you'. Some people find it helpful to give their stoma a name. My son named mine 'Squirtle' from Pokemon.

Really really hope this solves the problems for you and you can look forward to better quality of life! Hang in there and best wishes for a speedy recovery.

We're all here for any questions regarding the stoma etc so just fire away. Go slowly with the eating to begin with.

Big hugs x

Thanks guys! I don't seem to have much of an appetite anyway so only eating small portions of soft. Dr will send me home on soft diet but I can't seem to ascertain as to when I should introduce more hard or normal foods? And should I introduce one thing at a time like you would a baby to identify problem foods? That may take forever?

Sarah, thanks for advice, I love your stoma's name! So cute! I named mine before surgery already so I could start bonding already! I've named her Lilly. The water lily (lotus flower) is a symbol for rebirth or transformation. Thought it appropriate as the stoma is really the beginning of a new better quality of life!!

Love lolly and lilly

Hello L&L...glad to hear you're coming along. Yes that stoma will go down in size as everyone is saying.

Protein is a very big thing to help faster healing. Even if your appetite is very low..eat higher proteing things to help you. I swear by the Slim Fast powdered shake mix ith 8oz of milk to give you 15 grams per serving and if you like Greek Yogurt that is usually about 14 grams a serving.

The day after my husband was realeased from the hospital we stayed in the area for another 4 days just in case we needed the hospital for anything since it was a 3 hr drive away. (I would have been a nutcase if I had to drive him back there if something went haywire so soon after discharge as I have read happening here and there.)

An older home care nurse from the nursing services that was ordered for my husband was the one who really emphasized about the protein. I think I recall her saying 60-70 grams of protein a day would do wonders. (Husband's weight was about 175 lbs) Not easy to get that much ingested via food especially with no real appetite which was also my husband's case while recuperating. I am sure it helped him by focusing & concentrating on the protein intake for those first few weeks even when he didn't want to bother...lol.

Happy for you and always praying for everyone on heres recovery and especially yours now! Everything always works out in time just stay positive a you are and take your time recovering!!!

God Bless!!

Lolly,

Soo good to read this. I was shocked at one of your other posts how many sbo's you have had. HOPEFULLY this will reduce or eliminate those. What doc did all this for you? They sound good. Did they use any adhesion barrier? Hope you are able to eat solids the act of chewing right now I really miss. Best wishes. Rosemary

Hey LL.. How you doing?
x

oh bless your heart.. so sorry to hear that. Not surprising I guess given everything you've gone through, but still so tough. Have been thinking about you lots and just hope you can start to see the light at the end of the tunnel soon.

I doubt it's bacterial overgrowth, but probably your bowel wondering what on earth is going on and needing time to wake up or settle down! Hang in there.. you'll get there. As you say one day at a time.. awesome attitude.. that'll help lots.

Keep a close eye on the bag.. you don't want it burning. If output sneaks under the wafer and gets on your skin it will burn and break down and get v sore. Get the nurse to change the bag it if it starts to feel burning or sore. Orahesive powder is great for helping sore skin settle, not sure about paste just yet. It's early days though, so there'll still be stitches etc and it'll be sore while it heals. I'd change the bag every day at the moment to keep an eye on it.

Watch out for the stoma shrinking over the next few days/week and make sure the hole in the wafer is cut smaller as it changes shape.

I'm sure you already are, but try to walk walk walk as much as you can without exhausting yourself and get rid of that gas.

Hang in there sweetie, you'll get there. Deep breath. Sending hugs from the UK. {{}}

ah that's great, so glad you're doing a bit better. Sounds like your bowel is just freaking out and will just take time to settle. Liquids for another week is tough though, but I guess you'll just have to reintroduce soft food super slowly and go really easy. Must be tough, you must be desperate to scoff a huge meal!

At this stage I'd change the flange every day just to keep an eye on the skin. Just be gentle as you remove it. The hole in the flange needs to be cut so it fits exactly around the stoma and you might need to look at convex bags if you keep having leaks, but it might be a bit early for that. Hang in there and hope things continue to improve! just keep walking that gas off!

I'm struggling on thanks for asking.. seeing my surgeon on Friday and it can't come soon enough. I'm really hoping he can get me in super quick and re-do my stoma. It seems that it's narrowed or kinked or something, and I'm on liquids at the moment as the minute I try to eat I get obstructed. It's not easy trying to manage kids, getting them ready for new schools, doing bits of work and feeling like pants! as well you know. Anyway.. hang in there and keep us posted with your progress.. good luck for the discharge and enjoy being at home. hugs xx

Hello Lolly!! And welcome!! I am Mollie!

I live in the Mississippi Delta and had my colectomy, ileostomy, hysterectomy, and the diagnosis of ovarian cancer all in March 2011. I am just wanting to tell you, it will all be ok! It may take a while, I remember thinking my life would never be normal, or the same again. But even with cancer, life with an ileostomy is much better than the problems I had before.

There are many wonderful people here, and you will find almost all the answers you need! Just ask away!

I wish you the best!
Mollie

Hi Mollie and Rosemary.
Thanks for the words of encouragement and advice. The doc said it's probably due to not having eaten properly in 7 years, says bowel is hyperirritated and swollen. I'll just take it easy and take one day at a time. Bag filled with so much air last night that it almost popped, couldn't even sit up! Luckily nurse could empty it for me. It was accompanied by gut wrenching cramps again. Think it was result of soup they gave me last night, god only knows what was in there. Anyway he discharged me so I'll be going home later today. Said I can be more in control of what I eat at home. Looking forward but also scared, feel quite protected in the wings of the hospital walls! Big wide world out there and feel really vulnerable and afraid but know that I'll actually be fine. It's an inevitable step that I have to take!!

Thanks for advice, don't feel quite so alone knowing you are all a "post" away!!

Hugs
Lolly

Hi Rosemary

I live with my hubby and two daughters aged 14 and 10. Have a very helpful mother-in-law who lives just down the Rd. She has been a star doing all the cooking and shopping while I was in hops, so have a lot of support. I really am very blessed!

It's going well at home. Still on bland fluids / soups. Will try a little butternut or gemsquash tomorrow seeing as that is bulk of my soup anyway. Gas much less, still minimal drainage, maybe 200 ml, if that, in a 24 hr period. Seems to drain more at night so get up 2 to 3 times to empty it which probably isn't nec but so scared it bursts or messes everywhere in my sleep.

Still have quite a bit of pain and cramps, esp inside just beneath stoma and also feel like I get muscle spasms in and around stoma if that's possible.

Ended up changing bags, due to daily leaks, with help of colleague (R/N) and have had 3 leak free. Skin looks great and I'm coping well with new bags. Yet to change the base plate / flange myself but will give it a try tomorrow. Just difficult to see what I'm doing, especially under the stoma. Not sure if I should change it sitting, lying on bed or standing in bathroom. The srs have been doing it while I was lying in hosp bed and also at home it was changed whilst I was lying but think for long term standing in bathroom makes more sense. Any ideas?

Today was first day that I got properly dressed, not just in pyjamas, and was thrilled when first outfit I tried on fits without the bag even showing!! Although u have loads of very tight fitting t shirts and dresses which I dont think are going to work!

How are you doing Rosemary? And Sarah, how did your appt go yest? Will quickly check to see if there are any updates on the forum.

Happy Spring to all

Love Lolly