New blog.. 'Adventures with an Ileostomy'

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Ironmum
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Date Joined Oct 2010
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   Posted 8/2/2011 11:13 AM (GMT -6)   
I'm now 3 weeks post surgery and doing great. I've started writing a little blog about my recovery and hopefully my return to competitive sport. I hope it will help me as I recover, but also provide some education for folk who don't know much about it and some support for others in the same boat.

Hope you enjoy :-) x

http://bagthatruns.blogspot.com/
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 8/2/2011 12:28 PM (GMT -6)   
hi Sarah, i really enjoyed reading your blog. very inspiring!

so glad you're recovering and healing so well :) keep strong and healthy!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/2/2011 1:20 PM (GMT -6)   
That's great, Sarah! Can't wait to read more of the great things that happen as you get better :)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 8/2/2011 1:30 PM (GMT -6)   
thanks guys.. just hoping I stay complication free! doing ok so far. Keep well. S x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 8/3/2011 10:43 AM (GMT -6)   
Hi Sarah,
I'll love your blog and you have been such an inspiration to me. Reading your posts here on healingwell how active you'd been whilst you had you temp ileostomy definitely helped to make my mind up that living with a bag is such a good thing. I used to love running 10K prior to my Crohns diagnosis, but had to stop as the impact of running just caused to aggrevate my guts. Hopefully I will enjoy it soon again and hit the roads...can't wait!
Take care
Monika
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, scheduled for temp ileostomy on 7/19

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 8/3/2011 11:25 AM (GMT -6)   
Hi Monika.. thanks for your lovely comments. Have you had your surgery now? I hope you're doing ok?? how are you feeling?

I think the blog is really helping my friends understand what's been going on with me and what it's all about too - which is really good to raise awareness of ileostomies. I think it's good therapy for me too and will enjoy looking back in months time when I'm running marathons again ;-)

I know it's early days, but I'm trying to be really positive and patient at the same time (not my strength!) and know it's going to take a while to get my fitness back.

Really looking forward to hearing how you're getting on and getting back to hitting the roads again - you know you will! Where in the UK are you?
Take care Sarah x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/3/2011 12:04 PM (GMT -6)   
Yay, Sarah! When I was getting ready for surgery, I could find very little from runners and it was something I wanted to change so that's a big part of why I started my blog. I'm really happy to see another ostomy runner sharing their experience. I'm off to read now! :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/3/2011 12:11 PM (GMT -6)   
Sarah: have you tried the Sure Seals? I was just reading about your couple of leaks and the fears you have about being able to race, etc. I've run up to seven miles now (in some extreme heat and humidity, too!) and absolutely no problems from the ileostomy/wafer/etc. I have never had even a small leak while running or immediately after. I think your body heat just makes the wafer stick on even more or something.

I have had a couple of huge leaks since I started with the Sure Seals---including one where the SS and my ostomy belt were pretty much the only thing holding the wafer on anymore---and the SS has never let it out onto my clothes, etc. I sleep and run so much more confidently knowing that even if I do have a leak it's not going to be a huge mess. It has helped me so very much.

Post Edited (run4pancakes) : 8/3/2011 11:14:57 AM (GMT-6)


Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 8/3/2011 12:24 PM (GMT -6)   
Hey.. I was just reading your blog and thinking I must try some!! how funny is that! I have some upstairs but haven't tried them yet.. I'm just annoyed I've had a couple of leaks and I think it was from wearing tight clothes which pushed the output under the wafer somehow.. I don't know really.

I've tried a different pouch today without the eakin ring underneath and it's much better.. i still have a funny trench around the stoma and annoying stitches, so hoping when they are gone things will be better.

Fantastic blog BTW! makes great reading.. and yes you're right there needs to be more of this sort of thing. When do you get your reversal???
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/3/2011 12:46 PM (GMT -6)   
I see my surgeon again in early September and I'm hoping to schedule step 2 surgery for mid October after my half marathon. I had to do a 3 step j-pouch rather than 2 because of Prednisone use and my weight at the time. I'm within 5 pounds of where he wants me to be for the second surgery and still losing, so that shouldn't be a problem when it's time. Once that's done, I believe it's 8-12 weeks until I can go back for take down surgery.

Definitely give the Sure Seals a try...you will love them!
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 8/4/2011 7:34 AM (GMT -6)   
Sarah- I love your blog! I hope to perhaps try the CCFA Team Challenge 1/2 marathon in 2012 and look forward to seeing how you get back into running. I loved running, especially trail running, before surgery. Running after surgery still seems to really wipe me out. I can do huge 15 mile hikes with massive elevation gain no problem, but I can barely run a couple of miles on a flat trail without having to stop and walk. Ugh. I will get there.

I am very impressed by what you are already doing 3 weeks after surgery!!! It took me four months to be able to walk 1/2 mile! You are making excellent progress.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 8/4/2011 9:04 AM (GMT -6)   
Fantastico, great blog and it looks like i will be get some tips from you in the very near future......


This quote always kept me motivated,its from the late,great Barry Sheen." Dont wait for your ship to come in,go out and swim to the bloody thing".
Leyt xx
Male 36
England
Diagnosed 2007 with moderate UC
2 year remission till June 2009
Colonoscopy Sep 09 showed severe left sided UC
Medication - aza, asacol,prednisoline, IV steroids all to no avail.
NOV 2010-laprascopic subtotal colectomy and now feeling grrrrreat.

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/4/2011 10:48 AM (GMT -6)   
Thanks to you ALL for taking the time to read it. Early days for me compared to you guys who are far more experienced, but I hope it's helpful, I know I'm finding it really therapeutic. Most of my close friends and running buddies are finding it really too useful as none of them really knew what I went through and now they know exactly what an Ileostomy is!

NASCARon - re: my leaks. My stoma isn't healed properly yet and I have a weird bumpy gap around the edge. I also have some really annoying plastic stitches which poke out quite far - apparently they will fall out in about 6 weeks. Both of those things seem to be contributing to my leaks. I'm trying a combination of different pouches, rings, powder and paste (not all at the same time!) and trying to figure out what I'm doing wrong or what I can change. I had a loop ileo before and only had one leak in 3 months. So far I've had 3 leaks in as many weeks! very irritating. The pouch I have on today seems better without a eakin seal underneath and just orahesive powder.. fingers crossed so far! Any advice would be most helpful though. thanks!

Blueheron - you're a star yourself! love your blog and that pic of you in your swim gear is amazing. You look fantastic! I was trying really hard to see where your pouch was! inspirational. I have no idea how I'm going to be when I get back to running - I'm just sort of hoping I can to some extent.. I have an entry for the London Marathon in April which I rolled over from last year and if I could do that, that would be just amazing.. I guess my surgery was pretty minor in comparison to many and yours by the sounds of it - although I've had 4 separate operations over the last year, the final one was just the creation of the stoma and a laparascopy where he had a poke about. I also wasn't ill as such with UC or Crohns either before. I'm really taking it easy I promise, but really feeling the urge to do stuff and have more energy than I've had for a year.

Leyt - thanks so much! GREAT quote.

Keep trucking everyone - you're all just fab! X
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 8/4/2011 3:41 PM (GMT -6)   
Hi sarah,
I live in wantage in Oxfordshire and yes I had my surgery 2.5 weeks ago. And I'm so glad I did it - I only then realised how sick I was before and in how much pain! First 3 days were a bit rough as I was very nauseous and keept vomiting, oddly enough I soon figured it out that this was caused by all the pain mess and the anastesia, stopped all these except paracetamol and I was good to go home on day 4.

Since then it's only upwards and onwards, still a learning curve though especially trying to work out when my stoma is not active so I can change my bag. Sort of settled it down to just before going to bed after having a shower. I'm using salt's bags and I noticed the backing goes very soggy after a shower. It's also a one piece appliance and I'm struggling a bit getting it on right. Keen to try a 2 piece system once it's healed.what type of bag are you using?

I treated myself today to a shopping trip to Reading-as I'm not allowed to drive yet, I went on my own using bus/train 1h travel each way. It was kind of a test also how I do in the normal world and if i'mready to go back to work. I had my emergency kit packed and was a bit anxious about having a leak. I just kept emoting every hour or so - just in case- luckily I know all the public toiletsas I'm a crohnie. But all went well, and thanks to the 6 kg weightloss I had in the last month- shopping was a joy and I spent lots (too much?-I did suffer a lot, so expense justified). So my little excursions was a success and I think I'm ready to go back to work on Monday.
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, temp ileostomy on 7/19

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 8/4/2011 3:44 PM (GMT -6)   
Leyt, love that quote too!
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, temp ileostomy on 7/19

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/4/2011 5:17 PM (GMT -6)   
I like your son's comment that "it's kind of gross and really interesting at the same time;" I think that applies to so many things in the bowel disease/ostomy world.... hang in, you'll work things out, and you're doing great, even with a few bumps.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/4/2011 6:04 PM (GMT -6)   
Sarah -- great blog and I am sure it will be a tremendous help for you with friends and family unfamiliar with ileostomies.  Very inspirational for others who are in similar situations.

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 8/5/2011 5:26 PM (GMT -6)   
glad to hear you are doing good after surgery. Are you still pretty much bloat free now and able to eat again and truly enjoy it? did you ever feel puffy or watery when you would bloat before, and has that changed as well if you did?

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/6/2011 6:02 AM (GMT -6)   
Hey boat.. how are you doing? I have to say I'm feeling pretty perfect. Completely flat stomach, can eat anything and everything. No bloat, no pain, no constipation (obviously :-) ) and really really well. I've just been out on my bike for an 8 mile ride only 3.5 weeks after surgery and feel better than I did for the whole of the last 10 months while I've been suffering with this colonic dysmotility. I know not everyone is as lucky and I'm just hoping it lasts for me! I have the tiniest amount of indigestion if I eat too much, but that's it. Having a few issues with leaks but getting there with advice from the others and seeing the nurse on Tuesday.

I look back over the last 10 months and wonder how I coped at all. I thought I was living my life at about 70% but now I realise it was probably about 20%.. I feel fantastic now! have so much energy and got my spark back!

What's your situation now? are you thinking about surgery?
S x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 8/6/2011 7:11 AM (GMT -6)   
Love the blog!!!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/6/2011 7:47 AM (GMT -6)   
Sarah it is wonderful you are now doing so well. Just be careful sweetie and don't "over do" too much too soon and harm yourself or become easily susceptible to a hernia in this early stage.

Wonderful that you have that awful 10 months behind you now. So happy that life is good again for you.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 8/7/2011 10:27 AM (GMT -6)   
Well I had a subtotal colectomy with IRA. Post surger I developed pelvic floor probs. I actually dont get constipated, I just only poo bit by bit. My puborectalis and internal shincter stay tight. I also have a really bad stricture at my anastomosis. We are going to dilate that, and possibly surgicaly re-construct it if dilations dont work. I will also be getting botox done the 26th of this month. If both of these dont work out I may have to get an ileostomy.

I think my doc would want to give me a loop ileo though, as he doesnt want to mess with my rectum since I am young and fertility is a risk. How would you compare living with the loop, as opposed to the end ileo now? Is any one more difficult. Do you have to be more careful with foods with a loop, etc.

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 8/7/2011 1:21 PM (GMT -6)   
thanks UC wife.. I am being very careful don't worry. I was very tired last night, but made sure I got an early night and plenty of recovery. I'm listening to my body and resting when I need to. I'm also being very careful about doing my abdominal exercises as prescribed by the physio from the hospital.. I'm very conscious of not getting a hernia. I must admit I'm tired today, so didn't go for a little run that I'd hoped to. Tomorrow perhaps.. thank you for your concern though, much appreciated :-)

boatnerj - sorry to hear of your ongoing woes.. :-( I hope the dilation works for you.

Well I had a loop for 3 months and after 2 weeks it retracted a little and I had to go onto convex bags.. but other than that it was perfect. I ate anything and everything I wanted and only had a couple of leaks. I do remember the output was pretty whiffy compared to the end which does seem less stinky - although I may just be used to it now?! the loop was also a higher output and more liquid. This end one was supposed to be better to manage, but so far it's giving me more grief! it's not healed especially well around the stoma and is doing some weird tightening thing and I'm getting a few leaks. I think the output it generally thicker and I have to drink juice sometimes to get things moving. I'm not sure that's the usual experience though... I do think once I get on top of this one, sort the leaks etc it'll be better than the loop overall.
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 8/7/2011 3:25 PM (GMT -6)   
did you ever have problems passing mucus while you had the loop since everything was still connected??
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