Going back to an ileostomy....

Marie, I'm so sorry to hear this.  But to be honest, I don't know how you have done it for so long.  This disease just sucks the life out of everyone.  But you need to have a life, and being tied to the bathroom is not a life.  I know this was a very difficult decision for you to make and I wish you all the best and a good, quick recovery.  When will you be having the surgery? 

 

Dianne

I'm so, so sorry.

I don't think this disease *always* sucks the life out of everyone. IBD is so random, you know?  Some do so well, some not so much. It's an unfair disease.

Honestly, I had 20 years of truthfully extremely minimal issue. I was lucky to spend my young adult life with a rockstar pouch.

It's a disease with treatments that = Russian Roulette.

I agree. You are tougher than me. I probably would have thrown in the towel long ago. I have chronic issues too, but they are mostly things you cannot address with ileostomy (arthritis). My gut problems are more episodic and respond to meds, so I am OK with that.

 

i know that this is the result you have been fighting hard to avoid, but agree that you cannot spend your entire life either in the bathroom or the doctor's office! Life is too short for that.

 

Take care, and I hope the surgery is a cake walk!

 

Jan

 

 

I feel like I'm right there with you at this point. I've dealt with chronic Pouchitis, fistulas, fissures for almost 2 years now and I'm about at my wits end. The Crohn's re-diagnosis didn't help at all either.

I hear you going that route as well now have stress fractures due to pred for so long if not was unable to eat inlet was inflamed due to what is now Crohns.  Had my pouch since 1986 wish I had access to all this info back then seen my surgeon once after and was on my own it was a hard year till things settled down the last five have been problematic and have finally made decision waiting going on five months for a surg. date that is disappointing.  I hope you all goes well for you and soon are on the other side of this.

Best wishes for a speedy recovery. Sorry it came down to this. But now you'll be free of the bathroom and all the doctors once and for all.....and more importantly you will be free of the pain and discomfort. Good luck!

Thank you all for your continued support.   I can not imagine going through obtaining a j-pouch and all that follows without having this group of caring people. I feel so sad for you shawne.  You are strong.  I'm glad you found this group.  Better late than never.

TE Marie .. I think we are all lucky to have an ileostomy alternative, honestly!  While I am on my third pouch (all is well, knock, knock) I was always thankful for how well I felt with the ileostomy.  Best wishes and look forward to feeling good again!

 

KNKLHEAD, It sounds like so far your newer revised plumbing is working well! I hope it stays that way.  You are a pioneer having had newer procedures than many of us have had.  It's folks like you that blaze the treatment way.

 

I'm on the other end of the weight problem as I never lost the prednisone weight until my surgeries. I lost a lot of weight and have gained some back. The net effect is I am 40 lbs lighter than when I had my temp stoma.  My abs are sliced and diced resulting in flab.  I'm meeting with my surgeon and then the stoma nurse Wednesday so am going to leave it in the hands of the professionals.  I wonder if she could do a tummy tuck too and say it was medically necessary for the ileostomy 

 

I opened the last tube of calmoseptine.  I remember when a couple of us bought them in 3 packs from amazon.com.  I have a nice stock pile of medications too. I cancelled 4 on auto fill and hid them from the active list.  That felt good   I have some stock piles of others that are as needed.  I went from needing Loperamide (Imodium) to having strictures almost overnight so have a lifetime supply of them.  I'm trying to find positives besides getting rid of the pain and the constant enemas  I will finally be off of my soft food diet.  Nothing sounds good but I'm sure I won't fade away with it.  I will be able to travel without my enema kit  bye!

I look forward to hearing from others as they go back to stomas. I am going to try to not be a big baby this time. 

I'm a few weeks out and still a Big Baby! I hope you do better than me.

Hey AllyKat, that's okay, we can have a pity party 

It's only been 3 months since my surgery but I feel the way you do. I had an anaphylactic reaction to cipro and the flagyl doesn't seem to be working. I got so used to my ileostomy that I didn't mind it at all. I could work, workout, eat anything I wanted. I had the freedom from the bathroom. And now I feel like I have bad UC again. I have another appt with my surgeon and I am going to discuss getting an ileostomy again. I want to know how it goes for you. Good luck!

jmama, Do you mean 3 months since you started using your j-pouch?  If so then you should see your doctor to see if you have anything that needs treating, for example, c.diff, cuffitis, pouchitis etc.  People told me it would take at least a year to recover.  I really never did recover.  Another j-poucher that got his around the same time I got mine did go back to a temp ileo around month 5 because of chronic cuffitis and a physical demanding profession. So far he hasn't gone back to using his pouch. That was around 4 years ago. I hope things improve for you.

rachaelraven, I agree that it doesn't always "suck".  I had UC for at least a decade before it got bad enough to be diagnosed.  I thought it was IBS.  I was fortunate that I didn't have problems earlier.  I had 2 healthy children in H.S. when diagnosed.  There are no familial links so I am hoping the buck stopped here.  

 

allykat,

I hope you are doing well.  I haven't been using my laptop very much.  My new career is that of changing my stoma appliance and it's taking hours daily.  I have an appointment with a Stoma nurse next week and got advice over the phone yesterday afternoon.  It was changed just about every day when I was in the hospital - or 6 days.  We had to redo it twice one day. The stoma nurses thought I was a quick learner - you know like riding a bike.  Around the middle of my stay I heard one nurse telling the next shift one that they never had to empty my pouch as I did it when needed. I'm glad they appreciated that as I developed complications.  

 

I got dehydrated this time too.  My projectile vomiting technique is still there. They put in an NG tube late one night while I was shivering to death.  I think they brought in at least 16 warm blankets and I had the temp of the room turned up as high as I could control.  (I loved that feature. I've never been in a hospital that allowed me to control the room temp.) Around 2 a.m. a nice lady took me for an x-ray to make sure that damn tube was correctly placed and it was.  She commandeered around 5 warm blankets on that floor to bring back to my ward as the warmer was empty.  It was across the hall from my door.  Then she put several on me.  I was shivering so bad it was difficult to hold still enough for an x-ray.  They had to take 2 as the first was too blurry.  All they needed to see was that the tube was in my stomach......  After pleading with them to remove that tube I removed it.  I was expecting some stern words but they were fine with it.  The NP in charge of the floor told me the next evening that I'd had it in there long enough to get most of  'it' out.  (A man looking like a mortician took me down for x-rays of my lungs the next morning. That was to verify the pneumonia. It was really creepy and funny. Autopsy and X-ray departments are often in the bowels of the hospital. I almost said why didn't he just put me in a wheelchair. My husband saw several other men dressed like him transporting patients so it wasn't as funny as I thought it was.) 

 

The fever replaced the chills and I've decided I like fevers better.  I had/have a major UTI and what they thought was aspiration caused pneumonia.  They'd already given me one kind of IVantibiotic when they came in with another. I'm amazed that I even asked what it was.  It was Cipro and I can't use it.  I should have it and Flagyl on my list of medications I can't take. 

 

I also had a difficult time breathing earlier and pressed the call button. A male nurse came in to help and I said I was having a hard time breathing.  He asked why I was standing up then.  I think it makes sense to stand up to see if my breathing would improve.  That is a scary feeling.  I have a greater empathy for my BBF who has asthma.  They put me on oxygen as I flunked the pulse-ox finger test. I need it for a few days.  

 

So these are reasons why my estimated 2 night stay turned into 6.  The night after the shivering experience and 103 degree fever I didn't get to eat of drink anything other than ice chips and sips.  I didn't care as starving is better than nausea, IMO.  Pain is usually better than nausea too.  That day I refused my vitamins and supplements. After my release I noted that the policy is to not give patients their supplements while in the hospital, unless the doctor orders them. I'd never had them after other surgeries and thought it was nice they were giving me some of them. Now I know which ones are deemed as appropriate. 

 

Now I have around the stoma skin problems.  I've gone through this before.  It was the right call to just divert to an ileostomy and not to remove my j-pouch too.

 

I forgot to mention that my surgeon also diagnosed me with pelvic floor dysfunction too. I was tested for it several years ago and everything was okay so my pouch was just failing all over. In her operating report she described taking 3 hours to lyse my adhesions. I hope they don't return and think it's good that she did it all laproscopally. My abdominal pain is already less than it was before the surgeries.

 

Take care 

 

Wow Sweetie,

You have been through the mill, over the hill, around the block and then some...I am so sorry...that was one rocky ride (then agian nothing ever goes according to plan with you so why should this be the exception???)

So, if I understand, you are home now...how are you feeling? Are you getting any broth down? It is good for both those tummy aches and rehydration because it contains the right kind of sodium...heating pads (unless you have been warned against them) help a lot too...expecially behind the back (that week in a hospital bed usually puts pay to my back) and under the butt.

I am so happy that she did it with a laporoscopy but I am with you...she should of done a medically necessary tummy tuck on you to flatten out all of that excess skin and give you an even surface to work with. (sometimes they do automatically others they are afraid of cross contamination of the region especially if they are doing it with lap).

Get hubby to go out and get you some carrot juice, green goo and pommy (pomegranite juice)...they are all nice and tasty, will give your energy and healing a boost and will not make your ileo run like water...they are astringient and tend to slow things down a bit...not too acidy either.

Keep that zone nice and clean/dry too...don't forget the blow dryer trick if you are getting itchy, red and sore (my dad taught me that one), sun lamps are even better...they help to heal the area better than any cream if you can plug it for 5 mins and put the light on it.

All of my hopes for a swift and perfect recovery...And that you rediscover good health and freedom again.

Sharon 

Thanks for your advice Sharon. I started seeing stoma NP twice a week as my skin was disintegrating under the stoma wafer.  After 2 weeks I feel much better but it is still painful/burning.  

 

I'm back to my super duper fruit/veggie plant based protein smoothies daily except I am only making one a day and slowly adding other foods back into my diet.  Pasta really tastes good.  I couldn't even stand to smell a good sauce before my surgery.  The UTI I picked up in the hospital is back.  That is painful!  Hopefully my PCP will have the urine test ordered for tomorrow.  He could just prescribe the antibiotic for me and skip the test  When you'd had them now and then for 30 years you know what they feel like but I don't have a medical degree.