Anyone have an ileostomy and have Crohn's and not UC?

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80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 3/9/2010 1:12 PM (GMT -6)   
Hi everyone,
Today I was talking with my GI nurse and told her that I am open to the idea of having an ileostomy. I have Crohn's, but there is no evidence of it anywhere else besides my colon. She said that a resection was more likely (not interested...either see ya later diarrhea, or no dice) because it's sketchy to do an ileostomy when the Crohn's could come back in the small intestine. I understand the worry, but I thought I'd heard from a few of you who had Crohn's and not UC...maybe I was wrong.  I'm just frustrated because my dr wants to try like 2 more meds before I discuss surgery, since it's so drastic, but I am just done and want control of my life again. They are doctors and I'm not, so I should listen to them, but I'm just miserable. 
 
 
 
 
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/9/2010 1:29 PM (GMT -6)   
PICK ME, PICK ME!!! LOL, although I have a colostomy.. I have/had Crohn's and my major issue was always with the lack of bowel control/diarrhea. I had the resection and the Crohn's came back in the area they re-sected. My small intestine was so bad I had small bowel disease and the The Dr.s would always say the same thing "try this med, try this med...bla bla bla" Until finally.....I made an appointment with my surgeon (NOT my G.I. doc, but SURGEON) and DEMANDED I have either the ileo or colo NOW. I made a list, 100's and 100's of things I could do with either the ileo/colo that I couldn't currently do. I think this was the push that the Dr. needed to realize I was serious about wanting this surgery. At the appointment after listening to my ranting and looking over my list, Dr. Berg said "so, how's tomorrow?" Im not kidding, he was willing and wanting to do it asap. I started crying. I made the appoint. for surgery and never looked back. 80sChick, if you aren't getting the answer's you need, please look elsewhere for someone who WILL listen to you.

-Allie
www.oscartheostomy.blogspot.com


-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/9/2010 2:15 PM (GMT -6)   
I have crohn's and an ileostomy total proctocolectomy (colon, rectum, anus all gone) in Feb 2009. I was diagnosed with crohn's colitis 25 years ago. All was controllable by meds and lifestyle til 2 years ago. I became allergic to 6mp and nothing helped. We went through 6 months of humira. I was too sick to respond. My decline in the last 2 months before surgery was drastic. I had fistulas, my vaginal/rectal wall was a mess, and my rectum perforated. My crohn's was only somewhat active in my small intestine. He took out the small part of the terminal ileum where I had the worst disease. It's been a very long road but I'm starting to live my life again. My husband told me the other night how grateful he is for "the bag." He is overjoyed that I'm going places, cooking, eating out, etc.. There are still some very slow days but it's getting better.

My own gi did send me to a specialist in New York. He really wanted me to know this was the right thing and he wanted her opinion for me, him, and the surgeon. It cost me $750 but was so worth the peace of mind. She went through every possible drug I could try instead of surgery, how long each would take to work and what other drugs I'd need to help them work. Then, she went through different types of surgeries or surgery in stages. It was such a great two hours. I left knowing I was doing the right thing and fully trusting my own surgeon.

Best of luck to you.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2010 3:28 PM (GMT -6)   
Allison had a good idea about taking the list to your doctor. I made a list and looked at it often in the days and weeks leading up to surgery. It was amazing, i had 3 cons, and pages of pros. Maybe i should have taken that to my GI!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/9/2010 5:09 PM (GMT -6)   
wow, your doc won't listen???? my GI suggested it but didn't push...then I had complications from a resection surgery(10 years ago)............... et voila...Stanley:)

That was temporary and I had it reversed but I went back to a terrible quality of life and I asked for another...they (GI and C/R Surgeon) both laughed because they knew I'd be back...but I did it on my terms...and I never looked back:) I did have a proctocolectomy in Feb 2008 and have never felt better (knock on wood). I did have both small and large intestine involvement but it had been colon for the better part of 8 years and I am confident it the stats that 10 years is the mark where I have really a really good chance I won't see it again in the small (again, knocks on wood) but I'll deal with that if I have to.

Now, this may sound crazy, but since you haven't had small bowel involvement, there are some docs that will try a j-pouch on Crohn's patients ~that meet strict criteria~ Not knowing where you are from and you may have to travel, but that is always something to look into.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 3/9/2010 8:55 PM (GMT -6)   
My diagnosis was crohns/colitis and I have an ileostomy, have had its since early March of 09, my story is similar to sammies as I was diagnosed some 22 years ago and was controlled in the early years with drugs then they stopped working about 5 years ago and we tried everything I then started losing control of my bowel almost every day and couldn't go out anywhere I was so sick and malnourished. I had a right hemicolectomy around about 2005 then the disease came back in that spot as well so tried all the big gun drugs then had the ileostomy done followed by proctocolectomy (removal of anus and rectum) in July of 09. Of course with crohns there is always the possibility it will come back but I now have some quality of life and I didn't have any before. It was a last resort surgery for me but a matter of life of death in the end. Keep us posted and hope you get better soon

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/10/2010 11:44 AM (GMT -6)   
Thank you all SO MUCH for your replies. Allison, I cried reading your post. I am exactly at that point. I am calling around to surgeons today to try to get a consultation. I can't believe he was willing to do it the next day. I just want some relief. I'm 5'6, 100 lbs. I feel like this just cannot wait. I can't eat. I can't leave my apt. I can't sleep. I'm having diarrhea probably 25 times a day, I've lost count.
 
I've never had fistulas or perforation or abcesses or anything like that, which is I guess why my GI is not concerned? I don't know.
 
I hope I can get a consult quick.
 
PS, Allison, what types of things did you have on your list?


28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/10/2010 5:02 PM (GMT -6)   
Met with a surgeon today-- he squeezed me in on short notice!

He obviously didn't have any of my test results but after I get my colonoscopy tomorrow I'll have all my records faxed over. He wants me to have a CT scan thing where I drink 2 cups of stuff (unsure how I'm supposed to stomach that when I've been eating NOTHING for a week and have diarrhea 25 times a day, but...) to make sure there is no crohn's in my small intestine. he said then we'll talk about options...he is hesitant to do an ostomy if he can do a resection of my colon...grrr. But he does everything laproscopically, which is GREAT for recovery time! We shall see. CT scan next week. Have to figure out how to hold out till then.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/10/2010 7:24 PM (GMT -6)   
YAY @ 80schick!! Good on ya for sticking to your guns and getting that crap accomplished! LOL. Im 5'3 and was down to 92lbs so I feel your pain! I also would take 2 hours to leave the house, only to walk to my car, sit down, start the engine and walk/run right back into the house. I would be in the washroom for hours only to get into the car and start crying because I knew I wouldn't make the drive without having to stop 3-4 times. Need to know where every single available washroom in Edmonton (a city of over a million people) is? Ask me. My list, although totally bonkers...is true. These are a few of the things I can now do:
1) Go to an amusement park (6 flags, Disney...)
2) Pick up can's on the highway
3) Enjoy/eat on road trips
4) Jump out of a plane
5) Go out on a boat
6) Fart with confidence
7) Walk the Las Vegas strip
8) Take a bus tour
9) Go watch my niece's soccer matches at pitch's that don't have washroom's. (ie: school feilds)
10)Not memorize where every washroon in every city is!
This only only a small percentage of the stuff on my list. Most people take things like eating/drinking in the car for granted....not this lady. Not anymore! My blog is actually dedicated to all the things Oscar and I are now doing. As i've said before, having a colostomy has been the most freeing thing ever.

-Allie
www.oscartheostomy.blogspot.com
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/10/2010 7:29 PM (GMT -6)   
Thank you Allie. I'm going to read your blog. :)
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/10/2010 7:31 PM (GMT -6)   
on the way home from the hosptial from having surgery i stopped and got french fries from mcdonalds and i cried with happiness when i ate them! I didnt have to worry where the bathrooms were! THEN i stopped and got a milkshake at hardees! It was the best food ever, lol.
Its amazing, that three years later, there are still little stupid things everyday that make me thankful i had surgery.
80s chick-tell him you dont want a ressection that you want the ostomy! and if he wont listen get someone else who will!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/10/2010 7:31 PM (GMT -6)   
on the way home from the hosptial from having surgery i stopped and got french fries from mcdonalds and i cried with happiness when i ate them! I didnt have to worry where the bathrooms were! THEN i stopped and got a milkshake at hardees! It was the best food ever, lol.
Its amazing, that three years later, there are still little stupid things everyday that make me thankful i had surgery.
80s chick-tell him you dont want a ressection that you want the ostomy! and if he wont listen get someone else who will!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/10/2010 7:33 PM (GMT -6)   
Thank you so much, Summerstorm. Seriously your post made me want to cry...the last day I had McDonalds was May 17th of 2009. That's how long this flare has been. Isn't it sad that I know that?! It's so true though!!!
 
Allie, that morning scenario was totally how I used to live when I was in "remisson"...ugh, poop for 2 hours and then STILL not be ready to go. Kill me!!! ...although now I'm just having diarrhea every second so the morning just meshes into the rest of the day rolleyes
 

I WILL get a solution to this. PLEASE let my scope tomorrow show something worthwhile.


Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 

Post Edited (80sChick) : 3/10/2010 6:42:02 PM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/10/2010 9:06 PM (GMT -6)   
oh i understand you knowing that!
when i had uc (my fav thing to say, lol) i couldnt eat salads or nachos, except when i was pregnant, and i remember the first salad i ate when i was pregnant, i thought, OMG i havent had a sald in 4 years! even then i was worried about foods.
I remember saying things like (this morning actually) for 8 years i wasnt able to jump out of the bed and run out of the house!
Just try to keep the little things that will be great in mind when you get scared, those got me through moreso than thinking of the big things.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/10/2010 11:51 PM (GMT -6)   
I love being able to say "my crohn's days" Wicked.
I totally agree with summerstorm...the jumping out of bed, and getting out of the house in 10 minutes.....priceless.

-Allie
www.oscartheostomy.blogspot.com
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/11/2010 5:34 AM (GMT -6)   
I sleep through the night now...something I hadn't been able to do during my 5 year flare:(

Allie~ I can laugh at your list...it is SO ACCURATE...the only thing I'd change is soccer game to horse show since my daughter loves to compete and toilets are non-existent (or don't flush!)...not a good mix for a Crohnie!

Stephanie~when your talk to your ColoRectal Surgeon see if they'd be on board for a 'temp ileo' so you kind of get the best of both because you get to experience it~and all its benefits~without removing anything. When you have your strength back you could look into having more surgery and recovery would be a bit better when you go into the surgery healthy...just a thought!

Hang in there...I thing drinking those two cups is easier than colonoscopy prep...you can do it!!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


mazey
New Member


Date Joined Mar 2010
Total Posts : 16
   Posted 3/15/2010 10:54 AM (GMT -6)   
I'm glad to hear so many of you had successes with your ileostomys! I've had crohn's for 15 years and had a sub-total colectomy in 2001 which left me with an ileostomy. Since then I have had a lot of recurrent diease in my small intestine and from a lot of subsequent surgery i am now left with short bowel syndrome..
BUT in saying that, I would still never change it for the world. Having a bag gave me a new lease of life, I lost a lot of my childhood and early teenage years being so ill with CD and even with the further operations my life is still 1000x better than it was before I had the initial surgery. Without the bag I would have died as I was so ill in 2001 when they did it. You will have your bad days where you wish the bag didnt exist.. but dont forget how much good its done you. See any improvement in your condition as a blessing, even if it isnt a complete cure!!
Good luck 80'sChick
CD for 15 Years, Ileostomy for 9.
7 Re-sections since then and just started on Methotrexate!


Alittlelighter34
Regular Member


Date Joined Nov 2009
Total Posts : 24
   Posted 3/24/2010 10:50 AM (GMT -6)   
I was diagnosed with Crohn's, but the disease was only in my colon. My doctor is the one who suggested the ileo surgery, and I am glad he did. I was never able to get into complete remission, but now I feel that I am.
10 years of Indeterminate Colitis, and total procto-colectomy with ileostomy on 10/16/09! SO far so good!


Alan James M
New Member


Date Joined Dec 2015
Total Posts : 1
   Posted 12/3/2015 6:33 PM (GMT -6)   
Hi 80's Chick. Im new to this forum and with the age of your post - 5 years ago - I'm not sure if my tuppence worth will be worth it but hey best to share ! I was diagnosed with Crohns when I was 13...30 years ago. My main issue was SEVERE pain, then again my dad who had Crohns had more of a diarrhoea challenge. I thought I had a very mild form with flare ups coming maybe every 2 months but in the main they would go away overnight. They were pretty severe pains tho and would make me vomit and I could not socialise. Around 2010 my symptoms went into overdrive and I had horrific pains every other day and would spend the day vomiting to the point where (sorry for the squeamish) I would actually vomit poo...so scary ...I never knew you could do such a hideous act ! Anyhow, I'll keep it short, the pains got worse and worse to the point where I just laid in bed all day with my knees up to my chin! 2012 I spent Xmas and NY in hospital (in Florida) with a blockage and the surgeon was pushing for surgery and I figured course he would - he's a surgeon ! The blockage went and I thought I was good to go but then about a month later the pains came back. I could not even take our wee rescue puppy out :( . 2013 - After hellish 3 days of pain and morphine pills that did nothing I took myself to the ER. My HR was 140 and they admitted me. In the morning the surgeon (this is now back in the UK) said I ought to have surgery so I said go on then. All went fine until I ate a sandwich 4 days after and it caused a massive rupture and MASSIVE PAIN - I'll never forget it ..insane pain ! It took them 12 hours to figure out what was going on and at 3 am I had emergency surgery. It left me with an ileostomy and MF and I was gutted.. I always knew with a Crohns diagnosis I may have to carry the bag and back then it filled me with horror and disgust. I was in ICU for 3 weeks and on the ward for another 3 months. My whole body was rife with septicaemia and my organs were failing. I was lucky to come thro it....my family were told to prepare for the worst. Having an ileostomy is very challenging but once you get the hang of it, and appreciate that pretty much everything is normal, I would have to say its changed my life so much for the better....no more lying in bed curled up in pain, no more missing parties and nights out, and no more PAIN !! Finding the right pouch for you is essential - I was a bit hit an miss early on and had to deal with some leaks but now I think I have a combination of pouch and sealer that works great. I can eat what I want - avoid anything green but being Scottish I did that anyway ! I play golf even better than before, eat out, have a great social life, take long haul flights, swim in the ocean (on holiday/vacation - not Scotland !) full of energy, walk our dog 7 miles/day, eat pizza (!), don't vomit, and changing the bag gives me a bit of personal time on my own. I never volunteered or opted for an ostomy but looking at my life now and the life I had leading up to the re-section its night nad day. Getting used to the pouches is the only issue and sometimes you may get a lot of bile that will possibly irritate your skin but if your eat regularly then that ought not to happen. So, shortened down, I have Crohns, I had an ileostomy and I would never go back. Sorry about the long winded contribution :) Oh and my flare up was located in my small intestine near my ileum I believe if that helps :)

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/29/2015 9:45 PM (GMT -6)   
I commend you for being proactive. I fought having surgery until I literally had no choice. I have a loop ileo but I do have chrons. I've had it since 09 still holding on the the slim chance of being reconnected
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you
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