another newbie, with lots of questions...

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headphones
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 1/8/2008 12:44 PM (GMT -7)   
hi everyone! i'm actually coming here from the ulcerative colitis forum because i had an ileostomy in november. just thought i'd give you a brief history so you know where i'm coming from. i'm pregnant and due in march and when i had just entered my 2nd trimester, my UC flared up pretty bad and i ended up having emergency surgery to remove my whole colon which had perforated (ouch) which saved my life of course. the surgeon left my rectal stump so that i could have future reattachment. somehow the baby made it too, which was pretty much a miracle. throughout all of this i was in and out of the emergency room and had 4 stays in the hospital. i got out just in time for christmas and have my fingers crossed that i won't have to go back until it's time to have the baby. besides going through all the emotions that go with this, i lost my dad to colon cancer in december. all in all, it's been a pretty rough couple of months.

i'm now in my 3rd trimester and am on TPN at home to stay hydrated and keep my potassium levels up. they are consistantly low and i cannot seem to get them to normal levels despite all the potassium tablets i'm taking and what's in the TPN. the potassium tabs say 'extended release', is this ineffective for people with ileostomies? they come out whole in my bag. also, has anyone been on TPN with an ileostomy? my stool is so watery and i can't seem to thicken it up, despite trying the typical foods they tell you to try to eat. i wondered if it was because of all the extra liquids from the TPN?

apparently there are only 5 documented cases of pregnant women having this surgery so it's been impossible to find anything online with others who have been in the same situation, but i wanted to ask if anyone here has been pregnant with an ileostomy? i'm having some challenges with trying to heal my incision from surgery with my expanding belly. also, i'm having leakage with my bags and i didn't know if anyone has any tips that worked for them? i've tried several types of different bags, etc. but it happened again last night and is so upsetting to wake up to.

this is quite an adjustment and i'm mentally having a hard time coming to terms with this bag hanging off of me. i'm telling myself it's only temporary and i'll get the j-pouch surgery because that makes me feel better for now. did everyone go through this? i feel like i have so much to be grateful for right now and i feel like it's so vain to focus on this, but it does get me down. anyway, i'm glad to have this group to learn from, so thanks to everyone here :-)
headphones
29 yr. old female
diagnosed with pancolitis uc 7/05

fish oil, probiotics, multi and B vitamins
pregnant~ due 4/4/08!


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 1/8/2008 1:56 PM (GMT -7)   
Headphones, you are so welcome to our forum.

WOW! What a story, you have been through so much. I'm very sorry about your dad. Boy, your wee baby seems to be taking after it's mum! A very strong person, a fighter!

I don't really have any sound advice for you but i know someone here will have great advice for you.

Regarding the potassium tabs it does sound as if they will be ineffective when they are coming out whole, you should find out if there is a liquid form or maybe drops of some kind.

Listen i have had an ileostomy for 2 yrs and i still have the odd leak, it is upsetting, it's just trial and error at the start, experiment with different bags. Probably with your growing bump it will be hard to get the right bag, i'm sure it will settle down soon.

Keep posting and good luck with your precious baby,

Gillian x
Ileostomy - Feb 05, Hernia on site.
Fluoxetine - 20mg March 05 - july 06
Citalipram - 20mg July 06 - upped to 40mg now.


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/8/2008 2:11 PM (GMT -7)   
Hey! Just wanted to say welcome! I am not pregnant, but much of what you are going through (leaks, body image issues, watery output) are the same things we all went through in the beginning. I, too had super watery output for about 3 months, and then it FINALLY thickened up. No change in diet, it just finally did. When I was on TPN, my ouput was extra watery, so maybe that is affecting it. You seem to be right on track - and you have the added challenge of being pregnant! Be proud of yourself for coping and doing so well! :)
This is very hard in the beginning, and by beginning I mean 4 or 5 months at least. Congrats on your pregnancy! Keep us updated!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/8/2008 2:55 PM (GMT -7)   
Sorry I'm not pregnant either but ur story was so amazing I had to post. I don't even have my bag yet but from what iv been reading, time release medications period are pretty much ineffective on those with ileostomies bc the drugs don't stay n ur system long enough.
I have read some posts by pregnant women with ostomies, not many, but a few. U may want to check in the archives, if not someone will come along I'm sure. Ur n my prayers!
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?!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/8/2008 3:47 PM (GMT -7)   
I just wanted to say welcome as well! Congrats on your pregnancy. You are doing great! I have had my ileo since 1984. I will have to agree with the previous posts about time release meds -- they are a no-no for us ileos... not enough transit time for the absorbption of these meds.

I also have had some wear time issues with my pouch just over the past several months, but now have found something that really works for me. It is called Eakin Seals. First of all, what products are you currently using? Eakin Seals can be used with any of them. It is another layer of wafer (the sticky part that you apply to your skin). Normally, people's leaks begin right at the stoma opening in the wafer. (doesn't it feel like little ants crawling in there?lol!!!!) Anyway, if you use these Eakin Seals it really helps the seal around the stoma last a lot longer. I'm about 6-7 days wear time AGAIN! If you are interested in them, let me know and I'll tell you more about them. I think a couple of other folks use them here on this forum.

Good luck to you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/8/2008 3:54 PM (GMT -7)   
Wish I could offer advice for you with your pregnancy, but just wanted to chime in and wish you all the best. Is this your first? I can't believe what you have gone through and just wanted to let you know that I will be praying for you and your baby. We all have had a trying time accepting our ostomies, but like you said, it saved our lives, and your baby too. It will get easier to accept over time. Has your gynecologist said anything about how you will have the baby? Will you have to have a c-section or will you be able to have it vaginally? There is another forum called www.jpouch.org maybe you can post your question there, they even have a forum for pregnancy & ostomy. Keep us all posted and let us know how you are doing.
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


headphones
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 1/8/2008 5:38 PM (GMT -7)   
thanks so much for all your replies, it really put a smile on my face to read all your kind words.
tbraz- thanks for the website info, i'll go look around there too. i talk to my surgeon tomorrow but my high risk ob said that they will probably do a scheduled c-section so that my 'team' can all be there (surgeon/perinatologist/ect) . they are also concerned that vaginal delivery could cause tearing that would cause irriversable damage that would prevent me from having the j-pouch eventually. i'll find out tomorrow if the surgeon recommends going through my previous incision (makes me cringe to think about it, it's not even healed yet!) or the traditional bikini line incision. i guess the scar tissue is an issue for future surgeries as well.
peggy- are the eakin seals from hollister? that's where i've been getting my supplies, i've tried the clear plastic bags (both cut-to-fit) and pre-cut with the plastic clamps. i've done stoma paste and no paste and also with and without no-sting barrier film. i've tried a barrier ring that you can form yourself and use with any bag but it seemed to melt with my body heat and melt and cover my stoma. do you have that problem with the eakin seals? i have an oval-ish stoma btw, if that makes a difference.
do you guys' stomas flatten out more sometimes and stick out more at others?
this is my first pregnancy yes, and possibly my last after all of this. i can't believe i'm going to be a mom in two months, yikes! i'm excited but also very scared.
headphones
29 yr. old female
diagnosed with pancolitis uc 7/05
emergency ileostomy 11/07

vitamins, TPN
pregnant~ due in march


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/8/2008 5:42 PM (GMT -7)   
Wow ~ you've been through so much in such a short period of time. I'm so sorry for your loss. My heart goes out to you. I also lost my father only two weeks after my proctocolectomy surgery last year, so I understand what you're going through. sad  Thank God you have your baby and your health.
 
I was also on TPN after my ileostomy surgery, and my output was pure liquid. Once I was on solid food, the output thickened and has stayed that way ever since.
 
It's true that those of us without colons cannot digest extended release tablets, so you'll want to switch that so you'll absorb the potassium. Bananas and potatoes are high in potassium, and they should help thicken the output, too.
 
When it comes to a wafer that doesn't leak, it's trial and error. What works for me is the Coloplast Assura Extended Wear wafer. I get 7 days wear out of it and no leaks. If you call the different companies, they'll send you free samples.
 
Congratulations on your pregnancy, and please keep us posted on how you're doing.
 
Take care,
Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.

Pain-free, med-free, and very thankful to be healthy again :)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 1/8/2008 6:37 PM (GMT -7)   
I'd have to say there's a lot more than 5 women who have ever been pregnant with an ileostomy (I've even know women who have had an ileostomy surgery due to trauma during pregnancy). I've known quite a few throughout the years. In the later stages they do seem to have a problem getting bags to stay put but by experimentation they usually find something that works (maybe speak to your stoma nurse?). Some do have a natural birth and others have to have a cesarian - it's an individual thing.

Extended release meds won't work for ileostomates since they're designed to be absorbed by the large intestine. Have a word with your doctor and see if there's a liquid form you can take instead.

Good luck :)
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 1/8/2008 6:43 PM (GMT -7)   
Headphones:

Welcome to this forum. I'm sorry you've had to go through so much. I, too, had been really down before I joined this forum. But. I was turned around 180 degrees after sharing and reading the posts of the amazingingly supportive individuals who post on this forum. I hope you find it to be the same.

I have hydration issues and I have a PICC line that I use to take a liter of IV fluid each day. In addition, I take 4 tabs of Potassium Citrate a day. They also come through the ileostomy whole, but, I read in the directions (that is in that really tiny print) that comes with the medicine and it says not to be concerned if the pills come through whole it says that the potassium that was inside the "cover" has been absorbed. I am not sure that is totally true since I also eat a lot of bananas and potatoes, but, my potassium levels are now normal.

Sorry I can't help with the "female" questions but the ladies on this forum are the best and I am sure they will be a great help.

Good luck with the baby!

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


rumple
New Member


Date Joined Jan 2011
Total Posts : 12
   Posted 1/29/2011 9:30 PM (GMT -7)   
i know this post is old, but I wondered if you had a c-section with your rectal stump? Curious because I have a rectal stump with mucous fistula and was told I would need a csection when I get pregnant. I wondered how they cut for a csection without cutting where my rectum is attached to my abdomen.
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