HealingWell
Search Close Search
☰

health related quality of life

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/10/2015 3:47 PM (GMT 0)
Hi.
I just posted a queston about ostomy supplies in the long run. I woul be grateful for responses.

In addition to being with ibd for the last almost 14 years and having a date for colectomy next month after failing drugs or can't use them... I am also a clinical psychologist. .actually was trained as pediatric psychologist that is health psychologist for kids. I was looking online for good health related quality of life studies for stoma. Not much there...

Trying to see apart from anecdotal evidence what it the quality of life before stoma. Of course it's not going to be pre ibd but how is it?

Thanks.
Posted 1/10/2015 4:24 PM (GMT 0)
Kari,

You mention IBD but you didn't say if you have UC or CD. I'm guessing that you have UC because you also mention J-pouch. Was there ever a point were they weren't sure if you had CD/UC?

It comes down to personal choice, life was easy for me with my temporary end ileostomy. I have a J-pouch now and the surgeries take a while to recover from. Me personally, I would be good with either an Ostomy or Jpouch, both are better than UC.

Post Edited (ks1905) : 1/15/2015 9:12:55 AM (GMT-7)

Posted 1/10/2015 5:38 PM (GMT 0)
Keith, thanks again.

I had 13 colonoscopies in almost 14 years. Numbers 3 and 6 saw granuloma. However, my GIs (ibd specialists from a renowned clinic ) are not sure what it means since it was during a flareup. The last 8 colonoscopy pathologies said uc.
I am debating if to just do permanent ileostomy because I just want the "minimal risk" solution. I am a bit scared if possible jpouch complications. Don't want to have to take any more medicine... don't want to have to be in situation of removing pouch. Have 2 young kids and I just want to be a mom, wife and professional.
Posted 1/10/2015 7:01 PM (GMT 0)
Kari,

You can have an end Ileo and wait a few years before you decide what to do next.

If you had your rectum left in then you can still have a j-pouch. Long term you'll probably want the rectum removed because you'll have minor inconvenience of passing mucus and minor UC in the remaining rectum. You will also wanted the rectum looked at annually for cancer.
Posted 1/11/2015 4:17 AM (GMT 0)
My quality of life is 100% better with my loop ileostomy than it was with UC. I am able to work and have a life without fear of an accident or having to know where every bathroom was. Have there been leaks and issues with the ostomy? Yes, but my worst day managing my ostomy is better than having UC. I am getting ready to have my takedown surgery in February.
Posted 1/11/2015 9:03 PM (GMT 0)
My life before I got surgery was at "wish I could just die" level.
Now my life is 90% of perfect! Didn't want an iliostomy but had no choice and glad it has worked out so great.
PS, ran 3 marathons last year and qualified for Boston this April. I know I am tough on body but it works way better with less problems than before. Good luck to you
Posted 1/12/2015 1:04 AM (GMT 0)
Personally I've been disappointed with my physical health since surgery. If you like, you can put some of it down to depression and anxiety, but surgery was not the panacea it was cracked up to be - either by my surgeon or people on the internet.

Don't get me wrong, without it I'd probably be dead by now. But when I compare myself to my pre or even early Crohn's self, I know that, physically, I am so much worse off. I used to have a cast iron digestive system: now I have endless troubles with digestion and am scared of eating too many vegetables or fibrous foods. And I suffer from what feels like chronic mild dehydration. (It perhaps might be a bit different for folks with j-pouches since they can store their faeces - mabye they don't lose as much salt/water as people with ileostomies do.)

I'm having issues with my remaining rectal stump - mucus, urgency, occasional blood. There is still colitis in there: a flexible sigmoidoscopy found it. That said, while somewhat irritating, that bothers me less than my small bowel does.

Anyway, you'll probably love surgery, like most people on this site who've had it and hang around to talk about it. I just wish I felt the same way. On another note, you'll likely be eligible for a j-pouch with indeterminate colitis: IC is not terribly likely to 'turn into' Crohn's and statistical outcomes for colectomy surgery appear to reflect that.

Post Edited (NiceCupOfTea) : 1/12/2015 2:49:33 PM (GMT-7)

Posted 1/12/2015 8:32 PM (GMT 0)
Hey Kari. Your surgery will definitely change your life and, hopefully, you'll be as happy as most of us with the results. You're looking for the results of clinical studies relative to the quality of life before and after ostomies. Being a health professional, I guess you're looking for statistics like percentages, probabilities, rates of successes, etc. If statistically 75% of the world's ostomates have a 75% improvement in the quality of their lives, so what? We're all different in so many ways. I would rather go with the anecdotal evidence. What's being offered here are actual stories of people's experiences. You can develop statistics from our presentations. I think most of us feel fortunate to have had the surgical option. Certainly there are folks like NCOT who are unhappy with the results but continue to help lots of others by sharing and questioning. As a psychologist, you know we feel life differently from each other. Certainly, as a psychologist, you'll agree with NCOT that depression and anxiety can impose their ugly influence and depression, anxiety and PTSD usually come with the stoma. To most of us it's a surprise but when we recognize it, it gets fixed like the rest of us. Sometimes it takes a while.
I wish you well and hope you keep us posted.
Respectfully,
Michael A
Posted 1/12/2015 11:04 PM (GMT 0)
Thanks everyone who answered.
Michael, I guess you r right about the anecdotal evidenice part vs. Ststistics. Also, if forums are places where you hear about mostly the bad stuff it is good when you hear good news.
My surgery people just called and it will take place next week. I am quite scared.
Posted 1/13/2015 2:10 AM (GMT 0)
Hey Kari7, if you weren't scared you wouldn't be healthy. You also have lots to be optomistic about. I think there are many people who were in terrible shape, wrote lots of stuff here, got better and disappeared. I mention that because, being a scientist, you need to know there are loads of successes that aren't advertised. Lots of folks looked for help here, found and shared it then moved on. Good for us to know that because that changes the numbers. I'm betting on you doing just fine and, if you don't mind, I'll throw in a prayer or two for you.
Sincerely,
Michael A
Posted 1/13/2015 2:49 AM (GMT 0)

kari7 said...
Thanks everyone who answered.
Michael, I guess you r right about the anecdotal evidenice part vs. Ststistics. Also, if forums are places where you hear about mostly the bad stuff it is good when you hear good news.
My surgery people just called and it will take place next week. I am quite scared.

My 1st step is also next week (1/20). I'll race you to the recovery finish line!
Posted 1/13/2015 2:50 PM (GMT 0)
When you are feeling up to it let us know how you are doing after your surgery! I always like to hear how people are getting along.
Posted 1/14/2015 4:22 PM (GMT 0)
Thank you Keith, Michael, Buckeyechronie, NCOT, trigirl and serialflusher,

I don't remember who wrote in the forum sometime ago about the illusion of choice that we have in undergoing this surgery... it was interesting as we are trying to save and improve our lives.
Trying to think positive. Just had a call from the hospital about my medical history in preparation. I am freaking out some. Told people at work I will be going to surgery and won't be here around a month... hopefully less but not more. Told my boss and two colleagues what is the surgery.

Michael, if you are already doing some praying, if you don't mind please pray for the success of my surgery. Thank you.
Serialflusher, I don't know if i can race after the surgery you but will be following you. Read somewhere you are opening a company and have to postpone it a bit. I will think of you :-)
Hope this goes well short and long term. Hope to update you.

What an amazing group of people is on this forum.
Posted 1/14/2015 5:38 PM (GMT 0)
Kari,

So what type of surgery did you decide upon?

I had a 3-step J-pouch. My first step was the colectomy with an end ileo. I was back to work 2-weeks after the surgery and I had minimal pain from from the surgery, so I was off pain meds within 2 weeks. I was very tired but I could function.
Posted 1/14/2015 5:52 PM (GMT 0)
Kari7 - I'm the "illusion of choice" guy. Glad you remembered it, maybe I should trademark the phrase! :-) I want to wish you luck with your surgery next week. Yes it is scary, but you've been through so much in the last 14 years. This is just one more thing. And it likely will be the thing that changes your life for the better - much better. It did for me and for so many others on this site.

Here's my quick tips on what to expect, based on my experiences with 2 open bowel surgeries:
Week 1: Feel like death, but heavily drugged
Week 2: Out of hospital, still feel like death, less drugs
Week 3: Weak, but don't need drugs
Week 4: Gaining strength, I can eat and I'm hungry!
Week 5: Back at work! I have a life again!!!

P.S. I'm married to a clinical psychologist. What is with you guys' obsession with statistics and studies? I hear the phrase "show me the data" on a daily basis, regarding just about anything, even the dinner order. :-)
Posted 1/15/2015 3:59 PM (GMT 0)
hi guys,

Keith, it will be step one and i will see how i do there. Since it in past some GIs said Crohn i dont want to risk it. we'll send the slides to someone good, although i am sure where i am going they have good path services. Sounds like you had a great recovery, what did you take ;-)?

Bania, you cracked me up with your clinical psychologist question. i could not stop laughing for a few minutes and i really need that. I dont know what we have with statistics will have to look into that, but we do have a tendency to obsess. I also loved your 4 week chart. Are you an engineer? my husband is and he will likely come up with a chart like that . now being a clinical psychologist i might try to check whether i am working acording to that, adding standard error of measurement and what not :-)

thanks guys.

Posted 1/15/2015 8:54 PM (GMT 0)
Wow, kari7, you're good. Yes, I am an engineer. Is it that obvious?
Posted 1/17/2015 1:20 AM (GMT 0)
Bania, well, it is obvious to me :-) having lived with an engineer for the last 22 years.
what's that about psychologists marrying engineers?

anyway, i'm going to post it but my surgery was postponed because i took simponi in december and since he wants to do permanent ileostomy (i.e. stapling the distal part of the plumbiing), he wants to have at least 8 weeks between simponi and surgery. To minimize chances for complications. An emotional rollercoaster, but i trust his judgment. Although i was finally ok with going forwards.
Serial flusher, you go on i'll join you a bit later :-)
Posted 1/18/2015 5:55 AM (GMT 0)
Kari, I have said before and I'll say it again -- for me quality of life with an end ileo is essentially identical to life pre-UC. The end ileo has a negligable impact on my quality of life. I do recommend a 3 step if you think you might want a jpouch -- I was recommended that because my UC was slightly indeterminate, and the 3 step was a blessing because it allowed me to see how trouble free an end ileo was for me. Had the end ileo been a dogs breakfast for me, I would have chanced trying onwards for the jpouch, but with the end ileo working out so wonderfully, I am never going to give up my end ileo-- no way, never. I still have the rectum and maybe I'll get it removed one day, but it causes me no issues whatsoever. My diet is completely unrestricted, as are my activities. No one has a clue that I have an ileo unless I tell them, and dealing with the ileo for me is a total non issue. I am completely unrestricted in my activities. Well, nude modelling is out as a career change option now, lol, that's about it. Good luck. Ditching an IBD colon is win-win whatever you choose.

Post Edited (Probiotic) : 1/17/2015 10:59:45 PM (GMT-7)

Posted 1/18/2015 11:23 AM (GMT 0)
Ah Pro, I was waiting for you to post! Kari and I have been emailing but your story is close to hers so I am glad you responded! I feel the same as you about my ileo. She's amazing! And as for nude modelling......why not??? I plan on wearing 14 different bikinis (a new one each day) on the beach in Cuba in March and don't give a rats arse what anyone thinks! I am alive to share moments with my family. To me, that's all that matters!

K
✚ New Topic ✚ Reply