Should I be worried?

So glad it all went smoothly! And you "sound" wonderful and perky. Sounds like you are ready to get back to a life without pain and all the other horrible effects of this stupid disease.

Your account and excitement make it easier for the rest of us still hanging on to our diseased colons realize that losing them might not be as bad as we imagine! Thank you especially for that!

Please keep updating us when you can.

I am so glad you got through it all and it went well...

How are you getting on?

Poppie said...
I am so glad you got through it all and it went well...

How are you getting on?

Hey Poppie! Hello all!

I have posted on the Crohn's forum and also the Ostomy forum, and had intended to update this thread since it was my original thread.

A week post-op, I am doing very well. I cannot believe how sick I was prior to surgery--and how much better I feel now! The ostomy takes some getting used to, but I've found an appliance I like (sensura mio 2 piece drainable) and I am able to change my bag myself. I have no problem emptying it in a public restroom. So far, so good. I also have been shopping for undergarments and found various types at Dillards and target--will report on those later, just testing them out.

I have my husband home with me through the middle of next week, which is good because I do not feel quite ready to be with toddler by myself all day--she has been a real handful lately, bless her little heart--totally normal toddler attitude and asserting her independence, but draining none the less.

I have a lovely home health nurse that will visit me tomorrow and continue 2 days per week for a couple weeks. I see my CRS and Ostomy nurse on Monday. I am curious to know what the pathology report has to say about my diseased colon.

But 100% certain, it was time for surgery and I have no regrets. I don't regret trying drug therapy either--it was worth a shot--but I am SO glad to be off the Stelara (my hair is slowly growing back) and weaning off the prednisone (down to 27.5mg so far). My peri-rectal fistula seems to be healing since the surgery and I'm enjoying not dealing with incontinence, hemorrhoids, fistulas and fissures. Ironically, I am much "cleaner" with an ostomy than I was walking around incontinent and having explosive diarrhea all day long--the ostomy seems far more civilized.

If anyone has any questions or suggestions for me as an ostomate, I welcome those. XO

Plucky said...
In general though, I am still vastly improved from being sick. I can eat and drink and go about my life."

Good to hear that you're doping much better!

Wow so it was Crohn's disease, I assume you'll just stick with the end-ileo and appliance then?

I can't believe your pathology showed Crohn's. Did you have your upper checked before having surgery? I did, but I guess you could have no involvement there and have Crohn's. My biopsies were always very conclusively UC. I had the blood test too, which was really high on the UC side. My final colon pathology showed UC. I was really thankful when I received the report. cupcakes has Crohn's and an ileo and she's done fantastically well. She was really struggling when she was reconnected briefly, but I am sure other people have done well. I am sorry that about the pahtology, but I am happy you're doing well & living life.

I'm glad your QoL is moving upward. You were sick for so long! I'm sure youre going through a big adjustment both mentally and physically plus weaning off pred! No wonder you're feeling down. It takes the body a lot longer to heal than we expect especially after the pain of surgery itself is gone we think that means were healed but the body is still adjusting. Don't worry too much about lack of energy. Just try to rest and enjoy that you have a good excuse for not feeling like doing anything. As your body adjusts and recovers your energy will return! Especially now that you can eat!

Plucky,

Weaning from the devils tic tacs will make you lethargic and depressed. Hang in there and do the best that you can.

I am thinking of you!

Hugs!!
Clo

Hey NSSG and friends!
Happy New Year! Since I gelt the best I had in years, I was really busy over the holidays, entertaining in my home and doing lots of fun stuff with toddler. I drank wine! I had not been able to drink in years, as the colon didn't like it. I've been drinking lots of coffee too--starbucks got plenty of my money this holiday seasonon all their specialty drinks (the colon also begrudged me coffee). I cooked, baked and ate ALL the food as well, so I'm ringing in 2018 fat, but happy. And finally ready to go back to the gym (I felt somewhat fragile until about 8-10 weeks post-op). In addition to walking, I've lifted light weights and done a barre class without any issues (except soreness, which happens after a gym hiatus).

I see a lot of you folks had surgery/are having surgery recently so I'll tell you about life with an ostomy. It's waaaay better than being sick. But it is an adjustment and no, I don't love it. I empty it fairly often (probably about 8x daily) and I have thick output so it's a PIA to clean the opening each time. I am lucky in that I have "chsllenged" my stoma by eating 'taboo' things like steak, mushrooms, nuts, brocolli/asparagus/brussell sprouts, salad--you name it. *But* when I eat a lot and/or eat the wrong stuff I have to deal with the aftermath...thick output/high volume=super messy leaks (poop e'rywhere). And nuts feel like little shards of glass--just take my advice and stick to nut butters.
I might go several days without changing my appliance and then I'll fluck up and have a leak and another and another--I changed my bag 4x in one day on Tuesday. My skin was super irritated from that and I was paranoid to leave the house (like PTSD from bag blow-outs). Warm liquid helps move things along and thin output so I indulge in coffee more often. Marshmallows about 10 minutes prior to bag change helps stop output. Always have ostomy supplies + extra change of clothes close by. My favorite appliances are from coloplast and current favorite is a 2 piece drainable, item #'s 11462 and 10502. When you find an appliance you like *learn the item number* because there are SO many and it's impossible to order more without the exact code. For my leaks I've used paste and more recently barrier strips--very helpful--I find seals do not work for me.
Weaning off the prednisone has gotten easier *but* I'm still tired some days, still craving sugar, relying on coffee as a pick-me-up, and taking tylenol or vicodin for joint pain/back pain/healing pain. I just ordered some Charlotte's Web CBD oil though (everyday advanced) and looking forward to trying it for pain and anxiety--my docs won't give me any more vicodin and honestly I'd rather not take it. I think the pain will subside more after my adrenal glands recover from the "flood" of prednisone in 2017--I read it takes at least as long as you were on it to fully recover afterwards, so that will be awhile for me. But that's ok, it's still waaaaay better than being sick.

Gotta go, but best wishes to you all and holler if you need me. XO

The coloplast barrier strips work really well. Try the coloplast protective sheets. It is the first thing that you put on your skin and build up from there with the waffer. It really protected my skin if there were leaks.

If you are getting liquid output there are liquid absorption crystals that you can put in your bag to limit the number of times that you need to empty. If the output is too dry there are lubricants that you can add to the bag to make it easier to empty.

You’ll get the hang of it as time goes on. In another couple of months you intestine will further heal and the output will slow and become more reliable.

Have you tried an ostomy belt?

So glad you're able to eat and enjoy life more! I guess nothing is perfect once you have IBD but at least youre able to enjoy yourself more than before.

Thanks for checking in Plucky. What a wonderful update! So happy for you as I know you struggled for so darn long! Take extra time to enjoy the spring flowers and all of the little things you've missed, now that you feel well enough to

Have you decided to go the j-pouch-route or go with a permanent-end-ileo? Any more surgeries in your future for those goals?

Stinks on the persistent skin issues and odd pains...

iPoop said...
Thanks for checking in Plucky. What a wonderful update! So happy for you as I know you struggled for so darn long! Take extra time to enjoy the spring flowers and all of the little things you've missed, now that you feel well enough to

Have you decided to go the j-pouch-route or go with a permanent-end-ileo? Any more surgeries in your future for those goals?

Stinks on the persistent skin issues and odd pains...

Hey ipoop!

I really feel that a permanent ostomy is the right decision for me. Because my diagnosis was changed from UC to Crohn's Colitis, due to severe perianal disease--I'm sure you remember but for the folks who don't know--I was suffering from a perianal fistula, thrombosed hemorrhoids, fissures, and incontinence prior to surgery. And unfortunately there was not anything the doctors could do to "fix" it or make my life better, because I failed all the medications I tried (which was a lot).

The total colectomy saved my life and made my quality of life exponentially better.

I *could* try a j-pouch, but chances are that I would continue to have complications of perianal disease (as evidenced by the fact that I still have very active disease in my rectal stump). If I keep my ostomy and have my rectal stump removed, chances are I will be able to live a "normal" life (mostly) free of complications of disease and the medications required to treat it.

So I choose freedom. I choose a permanent ostomy.

It's still hard for me to accept this as my fate, but those are the cards I was dealt. And it could be worse. I'm very lucky that an ostomy can offer me a good quality of life. So I'll take it!