All I Want for Christmas is My Colon Back

... well, with the way I'm feeling these days, my version is "all I want for Christmas is my colon back!"
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Yes - like many of you, my ileo was a life saving op ... but dang I hate it sometimes. Just want to rip the whole mess right off!

And now that I know I have an even more concentrated UC in the rectal stump and will be needing another op in the new year ... shite.

Plus, why do I have less energy now ... shouldn't I be feeling generally better now that I don't have a large colon full of UC?

Ok, whine over.

But are there any of you singing my revised carol
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along with me??

Beatrice

Dear Beatrice,

Once you remove the rectal stump you will be fine.........

I wonder why you say remove the whole damn thing referring to the pouch,  but my only guess would be that you are being reminded by your bottom of the miserable ness of UC......Remove the bottom and you will then be able to focus on all the good the pouch bring s without any of the negatives..........

so gather up your strength and remove the bottom,  and I will hope that you find the goodness in that ,  that I have found........ITs truly the best decision I have ever made.............Never a physical issue anymore and never a pill and never a reminder of my illness......All gone.........Keep me in the loop:))))))))))))))  Michael

Hi Beatrice
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  Hi Michael
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  ...hey Bea I used to sing that years ago, something similiar anyway lol "...allllllll I want for Christmas izz my ost-o-meee gonnnne"    (that was me singin' lmao)  but these days I agree with Michael and am actually grateful for my ostomy, not without the bummer days from time to time, but not at all like it used to be for me.  As of late when depression gets me down it's no longer the osty that is the problem, .....but totally understand what you mean sweetie pie  
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....but also remember the important functions of the colon and now that we no longer have one it stands to reason our bodies don't always feel as good or up to par as it did in the past, we need to drink more for one thing, and maybe a good idea to get regular 6 month blood tests to make sure you're not lacking anything, keeping the body boosted can sometimes, with some of us, be more of a challenge.....and at times liquid vitamins help in addition to a little extra work keeping our bodies properly hydrated
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~Love from your Doe

Hey Beatrice the Doe has hit the nail on the head with the blood testing comment. Following an emergency operation last year for a perforated bowel it was discovered that I had a thyroid problem. This entailed regular blood tests to monitor hormone levels etc and will continue for the rest of my life.

I had a colostomy formed and when this was reversed an ileostomy put in place to allow the colon to heal. Following this op my endocrinoligist and I decided to widen the testing regime to allow us to monitor deficiencies as a result of no longer utilising my colon. This proved to be very beneficial and explained at times the way I was feeling physically and allowed me to be more proactive in controlling my feeling of well being.

I wish you all the best Beatrice. Take care.
Ken.

https://www.youtube.com/watch?v=KyWiiDxbk-A&feature=fvw

My Ostomy Journey: LeeAnne | Hollister

I'm having my Jpouch and bottom sewn up in Jan.  It's so final and scary. I talk to friends but, unless your dealing with it they don't get it.  I've had an iliostomy 2x before.  Seems now there is so much more out there to help.  I just want to still use my hot tub.  Any advice with this would be appreciated.

dONT GET THE STUMP OUT I HAVE BEEN TO HELL AND BACK AND TO HELL WOUND STILL HASNT HEALED SO MUCUS WEEPS OUT OF BUM THAT ISNT THERE BUT THERE BUT AINT I WOULD HAVE RATHER NOT BEEN TO HOS..NEVER BEEN DO HOOKED ON PAINKILLRS FROM 2008 ASK THEM ABOUT THE HEALING OF THE STUMP I HAD CROHNS SO BIT BY BIT IT HAD 2 COME OUT ..GOODLUCK
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  CHEERS MARE-MOOZA

I think everyone has different experiences regarding rectal stump removal, I have heard some horror stories and some really good outcome stories.  I have had my completion proctocolectomy October this year so I am recovering and have to say I have never felt better.  I was so ill before my operation, taking steriods and morphine, I had diversion colitis which was getting worse by the week, so opted to have my rectum removed and have to say it is the best thing I have done, Barr deciding to have my ileostomy formed.  Yes I wouldn't say that having your rectum removed is pain free because its not, but I feel 100% better than I did before my surgery.  

I wouldn't say to someone 'dont have it done' as everyone heals differently, you may have a bad experience or problems or is could be a breeze and have no problems, like I am experiencing at the moment.  Good luck for the New Year and I am sure that everything will be fine
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Ok how different does it feel not to have a rectum? Does sitting feel different?

Thanks  Lynn

I can give you my experience but no doubt someone will have a different experience.  

I found or still find at the moment sitting on hard surfaces a bit tricky, but my stitches are still dissolving.  But it is getting better by the week, when I first had it done, like everything else it is sore and you cant get comfortable, but the hospital gave me some Instillagel to put on my stitches that has a local anaesthetic in and it worked great,  I have to say the rectum wound was more sore than the laparotomy wound or drain site, but I have been having salt baths to keep the wound clean, have had no infections and it is healing great, i have had the very odd sensation of 'phantom rectum' but it has been few and far between, so generally I have had no problems.

xx

hi all i,m with wounded doe drink more, especially budweisers as for your butt sewn up the first six months were tough, but no problems since and i,ve had my ileo. for almost 26yrs.   ron in mich

Hi all!

Thanks for the replies ...

Mentally, emotionally - I'm not in as good a place as I was earlier in the year - or even just after the surgery for that matter. Guess I expected too much to improve from my ileo surgery. To go thru "all that" and still have major rectal UC has bummed me out; and that in itself makes me feel bad because I know that so many go through much worse after their surgeries.

Physically, I just feel plain old and worn out. Bloodwork looks fine - nothing amiss. I think I just expected to feel stronger and more energetic than this 1-year post op. So used to being very active.

And yes, it's the horror stories about rectal removal that have me worried and stymied. I'm thinking ... what if the result is even worse than what I'm experiencing now?

Trying to phsych myself up a bit for our 25th Anniversary holiday trip to Hawaii in Jan.

Beyondpar - I think you're right. The bum is reminding me of the pouch and I'm lumping it all into the "nuisance/grrrr" category.

Doe - we can sing together
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!

Time to laugh a bit today. Maybe head out to one of my local yarn shops and yak it up with the ladies for awhile.

All the best,
Beatrice
p.s. I would appreciate hearing about both good and bad rectal removal stories

( Doe slides across the floor in her socks ...gets shoulder-to-shoulder with Beatrice 'n starts singin'  
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  )

"Take those old records off the shelf ..."
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I read everyone's posts with interest.  For me, the removal of the rectum was more than 40 years ago, and I've never regretted it for a moment.  I was 15 when I had my ostomy ( for UC)  but the doctor left the rectum for a possible hook up.  By 16, I knew I never wanted to be hooked up , but my parents & doctors refused to even consider another surgery at that time.  I lived with that miserable stump for 4 years, going through all types of treatments, pills, drips, enemas, etc, trying to get it to heal.  It bled, it oozed, it was painful, and it interferred with a spontaneous teenage life.  I'd have to have a medicinal enema, and remain in bed with butt elevated. holding it in for at least 1/2 an hour a few nights a week.   Then, I'd get up, dressed and made up so I could go out with friends at 8pm.   At 18, I "demanded" the surgery, but again, my parents & doctors told me to wait another year.  So I started college with the "stump".  A year later, they finally consented and so it was scheduled.  I can't say things went well.  Of all things, I had an allergic reaction to the tape that was used, and so along with the the scar that had to heal, I had oozing hives/ lesions.  It was a mess.  I also sustained some damage to the nerves to the  bladder, which took awhile to resolve.  But  in the end, all went well.    One funny incident.....  When I had the first of my ( nearly 9 lb) babies, friends would ask me if the episiotomy was bothering me.  Would you believe, that after all the previous surgeries, I never even felt the aftermath of that procedure.  

I hope this helps with your decision

Hi Beatrice! I have had an ileostomy and total rectal removal for over 30 years now. It was all done at the same time as UC had gone from my rectum all the way to my small intestines. My experience with the removal of my rectum was horrible at first. It would not heal, constantly draining nasty-smelling mucus and developing abscesses from hair getting blocked up in the open hole left for the drainage. I had to have several surgeries to remove abscesses and they packed the hole each time hoping it would heal. Finally, my surgeon said that I was just going to have to live with it. I did for many years. Wearing pads so the drainage would not come through my pants and then having to deal with the chafing from being wet all the time. Then one day I went to a woman (no offense guys) colon and rectal doctor because my doc had retired. When she examined my butt, she asked what I was doing to clean the area. I told her sitz baths and that was it. What she told me to do, changed my life forever!!!!!! She told me to get a baby enema bulb from the drug store. Make a solution of 1/2 water and 1/2 hydrogen peroxide and to fill the bulb and then squirt the solution into the holes. I had three holes that were all tunneled somehow inside. When I squirted in one hole, it came out the other hole with all sorts of hair and gook. Then she told me to take a long wooden sterile Q-tip (you get them from medical supply stores) and go up in the holes and clean them out. OMG! It felt so good and after a few months of doing this like 2 to 3 times a week, the dripping stopped, the smell stopped. Also, she told me to shave in my crack and around the holes so hair would not go up in there. Now when I start to feel itchy and get a little drainage, I just take the Q-tip with some water and go up in there and clean it out. All the holes are still open. They never really closed, but I don't have the drip and abscesses anymore. Hope this helps you. I would not let it sway your decision. Like everyone is saying... everyone heals differently and everyone's situation is not the same. Good luck to you and I will say a prayer for you. Pat

Dear ucmama77 -- thank you so much for your post ... it was the tipping point for me in my dilemma.

If what happened to you post-op, happened to me ... I'd be done. Yeah, I know -- I'd have to handle it somehow and probably would. But I know myself well enough and where my emotional/mental strength is right now ... an outcome like you experienced would do too much damage to me in many ways.

A couple years down the road ... it might be different. But for right now, I'll continue as I'm doing - and approach my GI docs in the early new year re possible other meds/treatments for the rectal UC.

So thankyou for sharing your experience. I'm so sorry you had to go through that ... but know that you've helped me make a decision that does feel right for now.

All the best,

Beatrice

Has anyone tried hyperbaric oxygen therapy to help in their healing? I have been doing daily treatments since October to help heal radiated tissue and fistulas.  I was hoping it might prevent my having to get a colostomy but it hasn't and I will be having surgery on the 20th.  Still, the doctors think it will help in healing after the surgery.  It seems that some of the problems I've seen described in these posts could be helped by hyperbaric treatments -- I'll ask my O₂ doc on Monday.

Beatrice:  I have been treated for Crohn's disease for 37 years.  Most of the time my problems were in my small intestine and I was treated with drugs and a couple of surgeries to remove large sections of my gut.  Several years ago I started having problems with anal fistulas.  These became so severe (impossible to repair surgically, chronic infections, etc.) that in 363 days ago I had a proctocolectomy.  After the surgery, I had a j-tube drain in each hip that were removed when the fluid drainage stopped (about 5 days post-op).  Physically, it has been a good experience.  I do not have trouble sitting or walking.  I have NO drainage.

I have had problems with stamina and often general malaise.  My biggest issue is the emotional adjustments and living life with a stoma. This site has been good to hear how others have dealt with similiar problems.  But that is mostly the issue of ostomies in general.  My perspective is the proctocolectomy fixed my physical problems.  Based on my experience, the permanent removal of my rectum has been a relief -- like pulling a bad tooth!  The stoma has been my issue--understanding how/when my body works, learning to care for my pouch in public places, learning how to dress to conceal without hurting the stoma, etc. etc.

HAHAHA!!!
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     ..... ..."I'll sit 'n listen to -em byyy myyyself....to-day's music ain't got the saaame soul....I like that oolllld time a-rock 'N -roll"......don't try-n take me to s DIS-CO ....... you'll never eeeven get me out on the floor....in ten minutes I'll be late for the door..... I like that olllld time a-rock-n-roll......."

   woohoo!!
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  ..... Bob Segar rocks......but my legs aren't as hairy as Tom Cruise's when he did his little Risky Business dance  lmao!!
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https://www.youtube.com/watch?v=G2UVsyVLLcE

Hi Traveling Lady
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.....wow, this is very interesting, I want to know more about this....I hope my comp holds out so I can research this a bit, never heard of it before....thanks for posting!
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I'm trying to read as many posts as I can before this computer crashes on me again,...and I just want to say, I feel so bad for all the things we sometimes need to endure, ..... I want everybody in this thread, and everyone on this site, to be happy
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....no matter what is going on in your life, no matter how much pain or how hard the struggle......life is a dance, sometimes the music sucks, but the important thing is, we must always keep on dancin'  
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~Love from your Doe

I always like to start with Wikipedia, regarding information on hyperbaric oxygen therapy (HBOT):
http://en.wikipedia.org/wiki/Hyperbaric_medicine
I didn't find any articles on healing of wounds other than foot wounds, but it seems that the same principles should be applicable.  I will ask tomorrow.

Hi Beatrice,

I wish you the best with your situation.  I am new to this site and after reading posts on these forums, etc. I am starting to wonder what is wrong with ME emotionally.  I have had my illeostomy for more years now than I did not have it and I have never "viewed" my situation as anything other than a blessing because without it I would not have lived.  While yes it has not always been easy, I have just dealt with the cards that were given to me so to speak.  I guess I thank God that my illness never came back.    I have gone through 2 pregnancies (which some doctors said don't do it and others said just live your life), snowboarding down a mountain, water skiing, camping, roller blading, and such.  I just don't view myself as different or limited by my bag.  

But I do understand not wanting to take a chance doing an operation and having it become worse.  However, Beatrice, it might turn out better than what you already have.  I am really not sure what symptoms or illness you experience with a UC rectum as mine was taken out with everything else.  

And I agree with you Wounded Doe, it saddens me to see so much pain and suffering on this site.  I guess the road for us is bumpy to rocky to just full of potholes, but for you newbies out there, it really does get better.  It takes time, adjustment in attitudes, alot of prayer and faith, and support from wonderful people, and a really good sense of humor.  I have been in countless situations where I just had to laugh at myself.  

Sending you hugs and much love,

ucmama77

Hi Beatrice, it's me again.  I just read your profile and I forgot to mention to you I snorkeled in the Caymen Islands, 6 months pregnant, with my illeostomy.  No problems.  I was even hugged by a stingray in the same waters!  Was all so fascinating.  The reefs were absolutely beautiful.  I was learning to scuba dive a year later and had to quit because I had problems with my ears every time I went down.  So my ears were the cause of me not being able to scuba dive!  Imagine that!  LOL  Anyway, just wanted to stop back and let you know that it is possible with an illeostomy!  God's speed my friend!

I will be thinking of you when I'm snorkelling in Hawaii in Jan! I can't wait.

UC in the rectum is alot like the UC I experienced when I had my colon as my disease was in the lower part of my bowel for many years till it took over the whole color during the later years. Pain, mucus, blood (no stool of course).

I have a feeling I'll know when the time is right for the rectal removal. It's not now. Maybe I'll have to wait for an emergency of some kind .. or just be in the right mental/emotional place.

In the meantime, I plan to live in the moment and enjoy each day as much as I can.

How exciting!  I hear Hawaii has great snorkeling too.  Never been but want to go one day after my kids are grown and out of the house!  LOL