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The Great Unknown

Posted by SharkFan, on Thu Mar 12, 2020 10:01 pm

Greetings to you.  I'm assuming you are here for the same reason I was on January 6, 2020.  On that date I went to my GI for a sigmoidoscopy.  I had been dealing with UC for 16 years or so.  I was on prednisone on and off, 6 straight years in one instance, Remicade, Entyvio, Simponi and most recently Xeljanz  (I was even offered a chance to join a clinical trial).  These drugs caused a variety of problems such as Insomnia, "Moon Face" and most recently Rosasea.  I grew up with acne til my 20's and it resurfaced at 57 yrs old.  The Rosasea was worse than any condition of acne I'd ever had.  I'd been thinking of surgery for the last few years as there were no other "Wonder Drugs" if Xeljanz failed to work. 

In the Summer of 2019 my local baseball team, the Oakland Athletics, traded for a pitcher named Jake Dieckman.  Jake had been in town for a few weeks when he was interviewed about his foundation called "Gut it out".  It turns out he had an ileoscopy a few years earlier and wanted to bring attention to IBS and it's stigma.  I checked out the webpage and saw that Jake was posing with his bag attached and wearing a "Gut it out" t-shirt.  Needless to say I bought the shirt and thought, "If a Major League pitcher can play with a bag, I can live my life with one."  Thanks Jake for being an inspiration for me and others.

Now, back to January 6.  Prior to the Sigmoidoscopy I met with my doc and told her that "I can't trust my body anymore".  The sense of urgency was coming far too often.  I was still able to work without bringing attention to myself, play golf (stopping at every outhouse) and get around.  I did bail on friends numerous times during the holiday season.  I would go to the bathroom 6-8 times the first 1 1/2 hrs after waking.  Trips to the bathroom would then be every two hours or so.  My symptoms caused inconvenience to me.  However, I would later find that they were nothing compared to the many others in the "Meet an Ostomate" Community.  The Sigmoidoscopy was done and the doc returned to my room to meet with my Wife and I.  She told her there was nothing else she could do for me.  I was being referred to a surgeon.  This was a strange relief. 

I met with the surgeon who told me I was going to have an ilioscopy and proctolectomy.  She explained what these were.  I then went on line and found "Meet an Ostomate" , "VeganOstomate" and "Lets talk IBD" on YouTube.  I was, and still am, amazed at the way people open up about such a private condition.  Learning from others who have been there is huge.  This knowledge gave me intelligent (I hope) questions to ask the medical staff, and a feeling of what to expect.  People's stories of pain, disappointment and frustration prepared me for the worst.  I was contacted by member PETey 13 who offered to send me a variety of supplies.  Other advice was to wear a pouch for a day or so in order to find a prospective stoma placement and to see what wearing a pouch was like.  I did this and found that it wasn't as bad as I thought it would be.  My daughter came over for dinner that night and didn't even notice I was wearing the appliance.  This was a great relief.  As I've been told, no one will know I'm wearing this unless I tell them.  I also found a few books about the proceedure and people's struggles with IBD etc.  If you have the luxury of prior notice, and it is a luxury, use it to educate yourself.  There are plenty of members who went to the hospital for stomach problems and woke up with a stoma.  No prior notice, no prior preparation and plenty of pain.  I consider myself extremely lucky and admire the strength of those of you who woke up in pain, surprised and confused.  

The days prior to surgery were kind of strange.  Alot of friends and former co-workers are aging.  I lose about one every couple of months (I also run with a older crowd and worked with a large group).  I began wondering about my own affairs.  Things like passwords for computers, bank accounts, on-line bill pay etc. needed to be written down for my wife.  I'm also an officer with a charity and wondered who would inherit my job if I were to pass.  I wrote down a list of contacts, duties etc.  It then got weirder when I thought about what my final services would be like.  As a family we've causally and jokingly talked about this.  I noted what songs I'd like to have played, who to officiate etc. This also was a chance to write down a little note to my kids and wife giving them one last piece of advice and telling them what they mean to me.  I bring this up in the event you have the same thoughts and concerns.  I'd like to think they are common.  If you too have had these thoughts and don't think it's normal, at least you know you're not alone.    I had never had surgery and found myself suddenly concerned about "what if".  I placed this in an envelope, marked it "in case of the worst" and put it in our Family Trust binder.

The day before surgery was the traditional bowel prep.  It seemed to take better effect than those in the past.  I started it earlier in the day than normal. As much "fun" as it was, I kept telling myself I'd never have to do this again.  I made it through the prep, drank my broth, showered with Hibiclens and tried to sleep.  Laying in bed all night watching reruns,it was soon time to get up.  Time for another shower then off across the bridge to the hospital.  I went to the hospital with my Daughter and Wife.  We checked in a 6:00 am.  The waiting room was packed.  It was kind of concerning that so many others were going to have the same type of day as I was.  I was next led into the surgery ward and given more antiseptic towels to wipe down with.  I changed into my paper gown and went to the bathroom as my gut was really rumbling.  I tried to go but couldn't.  I wiped myself and had a funny thought, "I'll never have to do this again.  Our budget for toilet paper will be cut in half at least.  I went back to my Daughter and Wife and we had a good laugh.  

A short time later the surgeon and surgery team came in and introduced themselves and told us what they were going to do.  I was wheeled out and said "see you in a while" to my Wife and Daughter.  We entered the OR and I saw everyone I just met.  I was lifted onto the surgery table.  The table was something out of a Sci-Fi movie.  Nothing like a traditional bed.  I was lifted onto this and that was the last I remembered.  I awoke about six hours later in recovery.  My joints were stiff and aching.  I was told to keep moving them, stretch as much as I can that it will get better.  I had laproscopic surgery and was told that gas was pumped into my body cavity.  The pain was due to residual gas.  Once that pain went away I felt pretty good.  No pain in the throat, no tubes down my nose and no headache, all of which I was prepared for.   A nurse asked if I had any questions.  I had just one, "Whats my room-mate like".  I realized how lucky I was compared to the many others that I have read about and received advice from.  

I went in on a Thursday and was told that I would get out on a Monday.  Meals during the first night and following day were broth, broth and more broth with Jello thrown in.  My bag was filling about every 2-3 hours.  Just what I was told to expect.  I was also told it would slow once I started eating real food.  I was cleared for a low fiber diet.  After eating and watching my bag, I saw that solid food was not necessarily helping.  I was ready for bag emptying every two hours or so.  This was being confirmed.  My biggest concern was not being able to get enough sleep after leaving the hospital.  One of the side effects of the Prenisone I had taken was insomnia.  I had since been placed on prescription strength sleeping meds.  Even with these, once I wake up I stay awake.  Having to empty a bag every few hours at night was a big concern.  Not having the discharge slow was disappointing.  

I met with doctors the next morning.  I was told I was doing "Amazingly well!"  This was told to me by all of the different docs and nurses that worked on me after.  I was told that I would be leaving a day earlier than expected if I'd like.  After surgery when I went to my room I began calling friends, parents and family.  They couldn't believe that I just came out of surgery.  This was a shock to me also.  I bring this up not to "pat myself on the back" but as a thanks for all who had posted their experiences. As I said earlier, I'm very lucky, fortunate etc.  The knowledge that others gave me prepped me for the worse.  Maybe it being better than expected was a sigh of relief.  I knnow there are rocky roads aheard. 

As I was leaving I was asked if I wanted a flu shot.  I usually get one so took the shot.  BAD mistake.  I returned home and spent the night nauseous and wondering how much it would hurt if I started hurling.  I had one dose of Zofran left from pre-op.  My advice, if offered the shot after surgery, pass on it. 

Once home I began drinking as much water and Gatorade as I could hold.  I couldn't get enough.  All the literature says have 6 small meals instead of 3 large.  I'm not a big eater as it was so I didn't pay much attention to that.  As a result, I became  "high output".  My bag was filling with a coffee colored liquid every couple of hours.    I was contacted by a follow up nurse who explained what fewer meals would do for me.  I had potatos with dinner.  The change was noticeable within a few hours.  I was also given the advice of not drinking water alone.  I added juice to the water so that it would pass through my system slower and "bind" easier with the contents of my stomach.  I still can't understand the mechanics of that.  It works, so I'm going to continue on with it.  Just having a handful of pretzels, rice etc. makes a huge differance.  The output is now thick and much reduced.  

Getting back to the subject of sleeping, here are another few things that have happened.  My second night at home, after the stool started thickening, I went to bed and set my alarm to go off in 2 1/2 hrs.  Expecting to wake up at 2:00am, I woke up at 4:15.  I expected to be laying in a mess.  Fortunately my bag was half full.  I have since set a secondary alarm to go off 5 min after the first in the event I turn off the first alarm instead of waking up.   What I've found is that bag emptying is not necessarily a time consuming event.  I have a little routine of laying out toilet paper, containers, paper towels etc.  I can get this all done in under 5 min.  I was even able to get 5 hrs. this morning.  

Stoma output was a question I had.  I have read how others plan their meals earlier so that they can get an empty in before going to bed.  For me, the process of passing heavier output takes about 4 hours providing I eat enough starches.  In this short time the consistency has gone from nearly all liquid to an oatmeal like thickness.  While thicker and heavier, there does tend to be a lot of output remaining in the bag. I'm able to rinse the bag to clear this fairly easy.  I've been shown how to wipe the bag with toilet paper as well as wet paper towels.  I'm still experimenting with each method to see how careful I can consistently be.  

I'm wearing the Holister two piece system.  This is what I was sent home with from the hospital.  I work a job where I wear equipment on a belt.  The two piece system allows for horizontal wearing of the bag.  This method, along with a support belt, is what I'm expecting to wear.  I also bought a cheap electric razor for shaving before barrier placement.  

I have showered every day since surgery.  I use no cover.  The barrier gets wet.  That didn't seem to bother the hospital staff.  Since returning home, I have dried the barrier and bag with a blow dryer.  I haave developed  a rash around the barrier and hope that drying it may help.  My Ostomy nurse also has me using powder.  

Odors and Gas:  Yes, I still fart.  It just comes from my stomach and with no warning.  I know there will be a day when I recline in the dentist chair and let one loose.  I've had the same dentint for nearly 40 yrs so he'll understand.  I have found that the odor of discharge isn't a fecal type.  I had fish one night and the bathroom filled with that odor when I opened the bag.  Nothing offensive but if you're in a public facility it will seem to all that they just walked into a fish restaurant.  Other discharge has been similar in odor to a kale, spinach, protien powder type of smoothie. 

 

My rehab plans are to walk on a treadmill a few times a day, working up to a slow jog in about a month.  I told my Phys therapist I want to be playing golf in two months.  He says he'll get me ready for this.  In the four days I've been home I found it's really easy to just sit and let the day pass by.  I hope to not get in this habit.  I'd like to be back to work within 6 weeks. 

If you are still with me after this rambling, thank you for your interest.   Hopefully you got something out of this.  I know that I did by just typing this out.  Once again, a big THANK YOU to the "Meet and Ostomate" Community.  I just signed up for the lifetime membership as my bag isn't leaving til I do.  

Good health and thoughts to all of you, 

Shark Fan

Reply by britathrt60, on Thu Mar 12, 2020 10:43 pm

Hi Shark

This is a great place to vent, rant, laugh at some of the comedians on here or just chillax reading notifications and getting awesome ostomy information.   Take care 

Ange  

Reply by lovely, on Thu Mar 12, 2020 11:14 pm

Hi Shark Fan, glad to hear your story I am sure it will help others, Glad you found nthis site and got some help.This is a good place for information and also to vent about things.

Reply by w30bob, on Fri Mar 13, 2020 12:31 am

Hi Shark,

  Glad to hear things have gone well for you!  It sure seems surgeons have made considerable advances in surgical procedures in the past few years. When I was interviewing surgeons before my surgery I always asked if I was a candidate for Laproscopic surgery.........and each one laughed.  All 3 of my surgeries have been "open", which adds a lot to the recovery time (and pain meds needed).  Welcome aboard my friend!!

 

Regards 

Bob

Reply by ron in mich, on Fri Mar 13, 2020 10:32 am

Hi Shark are you a fan of the san diego chargers if so then you might know of their old place kicker Rolf Berniske who had an ostomy, i heard about it from the uoaa.org site and he was on the cover of their magasine the phoenix.

Reply by Bill, on Fri Mar 13, 2020 4:37 pm

Hello SharkFan. 

Thank you so much for sharing your story, which I found to be an entertaining and 'enjoyable' read. I feel that if more people were to document their experiences in this way, then those who are awaiting surgery might be reassured and less anxious about the procedures and the after-effects.  I do hope that, now you are a paid up member you will continiue to write and let us know how you progress on this journey. 

Best wishes

Bill

Reply by SharkFan, on Fri Mar 13, 2020 7:33 pm
Bill wrote:

Hello SharkFan. 

Thank you so much for sharing your story, which I found to be an entertaining and 'enjoyable' read. I feel that if more people were to document their experiences in this way, then those who are awaiting surgery might be reassured and less anxious about the procedures and the after-effects.  I do hope that, now you are a paid up member you will continiue to write and let us know how you progress on this journey. 

Best wishes

Bill


Hi Bill, 

 

Thanks for the comment.  I hope it helps those anticipating surgery will find this useful.  As one member commented on a past post.  Start the journey as a student then become the teacher.  I have a lot to learn and a long (hopefully) road to travel.  

 

Best to you, 

 

SF

Reply by SharkFan, on Fri Mar 13, 2020 7:35 pm
ron in mich wrote:

Hi Shark are you a fan of the san diego chargers if so then you might know of their old place kicker Rolf Berniske who had an ostomy, i heard about it from the uoaa.org site and he was on the cover of their magasine the phoenix.


Hi Ron, 

Yes, I remember Rolf.  I think he beat our Raiders a time or two.  I've read about him and seen that he has become a great advocate for our community.  

Good health to you, 

 

SF

 

Reply by veejay, on Sat Mar 14, 2020 2:59 am

Brilliant piece of writing Shark Fan…..exactly what this site is supposed to be about.

A place for people to exchange stories and seek advice.

There are some wonderful contributors on here.

As you said, just writing about your experiences so far was helpful to you, as it will be to your readers.

So I would like to officially welcome you to the world-wide “Altered Plumbing Society”. I do hope you post again.

All the best to you.

V.J.

P.S. The want to exercise will come. It all takes time.

 

Reply by Puppyluv56, on Sat Mar 14, 2020 9:45 am

Shark Fan, 

What a great story! Nice that you had notice and found our site prior to your surgery. This site is amazing and such a library of information through experience. You did mention you had a rash. In the event you have a problem clearing that up, you may want to contact Coloplast and Convetec to get some samples of their two piece systems. Your skin just may not like the Hollister adheasive. Worth a try to solve that issue. if you need more than the three pouches they send, let me know. If your stoma size is the same, I will be glad to send you more of each. I use both Coloplast and Convetec. Send me a private message if you Get to that point. 
Hope your recovery continues at the high speed rate! You may be on the golf course ahead of schedule! Keep us posted. 

Puppyluv

Reply by Little Lulu, on Sat Mar 14, 2020 7:45 pm

Hello, Shark Fan. Your post was a well documented, interesting read. I applaud you for doing all your research and preparing yourself. You have a wonderful attitude, which will certainly help you on this new journey. This is a great place to share information, ask questions, and get to know people with similar experiences. I hope you will continue to post and keep us all updated on your progress. The people on this site will make you laugh, enlighten you, entertain you, and they will always be there to listen. Welcome!  

Lucy

Reply by SharkFan, on Sat Mar 21, 2020 8:07 pm
Puppyluv56 wrote:

Shark Fan, 

What a great story! Nice that you had notice and found our site prior to your surgery. This site is amazing and such a library of information through experience. You did mention you had a rash. In the event you have a problem clearing that up, you may want to contact Coloplast and Convetec to get some samples of their two piece systems. Your skin just may not like the Hollister adheasive. Worth a try to solve that issue. if you need more than the three pouches they send, let me know. If your stoma size is the same, I will be glad to send you more of each. I use both Coloplast and Convetec. Send me a private message if you Get to that point. 
Hope your recovery continues at the high speed rate! You may be on the golf course ahead of schedule! Keep us posted. 

Puppyluv


Puppyluv,

 

I took your advice and now have samples of Coloplast.  It seems to be helping with the rash.  I did have my first episode of "ballooning" when I woke this morning.  Luckily I got up just in time.  Not much output, just alot of gas.  Looks like my filter may have clogged.  Holding my bag en route to the bathroom was like holding a firecracker that had just been lit.  Thanks for the advice. 

SF

Reply by Puppyluv56, on Mon Mar 23, 2020 10:20 pm

hey Sharkfan,
Glad to see It is working. Sometimes there are components in the makeup of the barriers that do not agree with our sensitive skin. And , just when we find one that works, they change it without telling us so, I always say, We are always evolving! Are you able to get an order in to your supplier or do you need me to send you some? Depending on your stoma size that is 
Puppyluv

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