One more question, sorry.

Is it normal to wake up (when I can sleep) with aching pain in my stomach/back?  Its nothing terrible and it goes away with time -- I'd assumed it was from laying still for so long, but I didn't know for sure.

Thanks.

Hi Jeann!  Welcome to our group.  You have been trough a lot in your young life!  It's my son who has gone through pretty much what you have gone through.  The nausea, I'm not sure about.  Could be a lot of things.  As far as restless legs, I suffer from that. There is a medication for it, I don't remember what it is but check with your primary.  It didn't work for me.  Made things worse.  I take Klonipin for it. Klonipin is an anti anixity drug but it helps me sleep at lot.  Also, I'm getting into essential oils.  I put lavender and lemon in a defusior and go to sleep with that.  It's a calming formulation and I seem to be sleeping better.

as far as the back pain, could be from sleeping on your back.  I would check with your doctor unless someone else here can answer that question.

try to relax and I hope things go well.

dianne

Welcom Jeann- ever since I had my colon removed along with all my other surgeries, I get nauseous very easily too. My surgeon doesn't seem to have any issue prescribing Zofran. It helps tremendously! I cannot figure out why I get so nauseous, other than my plumbing has just completely changed. Dramamine helped me too when I didn't have a script, but Zofran works much better.  Kara

I have a j pouch. To prevent butt burn, I use a travel bidet. It's a plastic squeeze bottle with an angled nozzle available on Amazon.com or Amazon.ca for around $14. It has saved my life and sanity and tears. I use it every single time I go to the bathroom to clean the area completely. It is very easy to use. Then use toilet paper to gently pat, pat dry. Then Calmoseptine to stop any burn, or Cavilon to heal. Make sure the area is completely dry before applying barrier cream or you will end up sealing in the moisture and that will lead to irritation. Make sure your post takedown diet is healthy with lots of whole foods and protein to help you heal much faster. I ate lots of poached egg / tofu / rice/ bone broth to keep up the protein (for tissue healing) and B vitamins because loss of colon is related to vitamin B deficiency (the B vitamin complex helps manage stress). My doctor did bloodwork and found I was extremely low on vitamin D and recommended I take vitamin D in 1,000 international units daily , and that seems to help me sleep. Good luck to you. 

Also ginger is great for nausea.  Either in ginger ale or capsules or even suck on a piece of real ginger.  

Welcome, Jeann. You *might* have less butt burn than folks transitioning from a complete colon, but it's really probably best to prevent it in the beginning with a barrier cream applied after every BM. Once it develops it can be a bit of a torture show. The bidet idea is also a good one, whether it's a squirt bottle, an inexpensive toilet attachment (BioBidet has one for less than $35, though you can spend a lot more). I waited years to get a bidet, and even though I didn't have a big problem with butt burn I wish I hadn't waited.

Your nausea should (IMO) be diagnosed, if possible, rather than covered up. A common cause of chronic nausea is gastritis. Some docs do an upper GI scope to prove it, and others just try a few weeks of an acid blocker, like Zantac. If it's caused by the bacterium H. pylori then a combination of antibiotics can eliminate that - your doc would usually have to test for that.

You probably have a loop ileostomy. Your upcoming "takedown" actually means taking down the loop from the abdominal wall. Connecting (or reconnecting) an end ileostomy is a very different procedure.

Good luck!

Thanks for the answers, all of you, always good to have more information.

I'll have to look into a bidet, and the barrier cream -- and I've actually got an upper endoscopy in a few days (yay stomach pollyps) so maybe if there's something amiss otherwise, the GI doctor will find it.

Jeann, I'd suggest letting the endoscopist know about the nausea.

You have me thinking Scott & Jeann due to your insight! 

I was diagnosed with acid reflux in 2008 but have not had an endoscopy since then to determine if my nausea, heartburn, upset stomach could be something more. 

I take Dexilant and Nexium to keep my symptoms under control - and as mentioned, Zofran & Dramamine. So I may be 'masking' something different. I believed these symptoms to be typical with any IBD diagnosis, but I never really explored. 

Thanks to you both- It's got me thinking! ��

I wish you luck with finding out if you do end up exploring it, Kara, and yeah -- I've brought the nausea/dry heaves up to my GI before but I'll do so again, maybe he'll be able to find something. 

Kara, acid reflux usually doesn't have a deeper explanation, unfortunately, though occasionally it does. The nausea, though, needs to get explained enough to treat the cause. Anti-nausea medication is best limited to a short-term fix or when you're stuck with the underlying cause.

Restless Leg Syndrome I get horribly when I need iron badly!  My cells are starving for oxygen they tell me which causes the pain. If it gets too low you may need a blood transfusion.  I get iron via iv twice a year since about 5 years out with pouch.