When does it become forgettable?

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bearbear3
Regular Member


Date Joined Nov 2010
Total Posts : 61
   Posted 11/20/2010 6:50 PM (GMT -6)   
::WARNING:: I'm grouchy this evening.

So it's been about 2.5 months since my temp ileo was placed. I have read blogs and watched YouTube videos from HealingWell members and they are VERY helpful but at the same time I feel like I'm at a loss here. My pouch always feels like its pulling, especially when there's output, and I feel like my stoma stings quite often. I just used an Eakin Seal for the first time and I think its causing issues but I'm still on samples and have my last bag in place. It's not leaking yet and I should be getting a shipment on Monday.... (I have no medical insurance, no state or county assistance really, and no job at the moment). All of this stuff, especially the pain, is making me grouchy and moody and STRESSED..... which probably isn't good for the ileo and I know it's not good for my CD.

So I guess I'm just wondering when does it become "second nature"? The woman in the appliance application video from Convatec is gardening and I can't imagine being able to do that yet! I get very tired and scared because I've already almost died once (colon erupted during colonoscopy).... I just would like to feel "normal" again - whatever that means for me........

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/20/2010 7:34 PM (GMT -6)   
Have you tried using an ostomy belt? It might make help to reduce the "pulling" feel.

Sue

bearbear3
Regular Member


Date Joined Nov 2010
Total Posts : 61
   Posted 11/20/2010 7:38 PM (GMT -6)   
I haven't yet no. With no insurance and no job I'm getting by with what I'm getting as samples. Once I have a job (I'm currently looking) I'll look into one. I hadn't even thought about that. Thank you.

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 11/20/2010 7:47 PM (GMT -6)   
Ostomy belt should help. It bothers me when I don't have it on.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Temp Ileostomy and colon removal surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Takedown surgery - 8/?/2010

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 11/20/2010 8:39 PM (GMT -6)   
You and I are sort of in the same position. I've had my temp ileostomy for just less than four months. I've experienced lots of the same things you have and I still do. My biggest concern was the pulling! I couldn't stand the feeling of so much extra weight on my stomach, it bothered me so much. It still continues to be annoying but not as much. I am looking into an ostomy belt as well, or some other type of device that will keep the weight from tugging at my stomach. I like the idea of some type of tube top to keep it from weighing down my stomach. An ostomy nurse mentioned ostomate underwear that has an extra little pocket in the underwear to place the bag in, that holds it up. I think the company is called ostomy secrets.

I'm also still in the same place about not being able to do things that I used to. I was just out the other night and almost had a panic attack about being with so many people and being away from home for so long. I think we slowly have to re-introduce ourselves into society (as strange as it sounds) to get used to being with people.

The tiredness will get better as well as the pain in the stoma. For quite a while putting anytype of pressure around the stoma bothered me a lot, but now you can do anything to it and I don't mind. Everything just takes time I think!

I'm here to talk to if you ever need someone who's going through the same things at around the same time! :)

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 11/20/2010 9:23 PM (GMT -6)   
Sara I know how you feel. I'm 6 months out and I can still feel a little bit of a pull. Request a sample kit from hollister. I think mine came with a belt and a cool travel pouch for ostomy supplies.
The belt helps big time with the pulling though. I wear mine 24/7.
And don't worry you will be able to do just about anything you want in know time.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/20/2010 9:45 PM (GMT -6)   
if you tuck your bag up into your underwear, it wont pull as bad. And also, tape the top of your bag to your stomach, if your incision is healed, and that helps A LOT. or you could get a belly band from motherhood they cost like 15 dollars, and that really helps me.
i dont know how far out i was, but i remember one night i was sitting on the computer and i totally forgot i had it! if i hadnt come on HW i wouldnt have remembered and when i did and felt it it was almost ready to blow up, lol

Wroxton
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/21/2010 12:29 AM (GMT -6)   
I had the most horrible awful complications you can imagine after my ileo surgery. That was in May 2009. After being in the hospital for 8 months due to those constant and horrible complications I finally got out of the hospital and wondered if I would EVER get to feeling normal. I was resigned to a life of misery and feeling like life was over. Well, over time I have finally hit a good routine where my appliance is not so overbearing to me and taking a shower, traveling, chores, etc. is just about back to as normal as it was before. It is now different, but not miserable. I got one of those bands that holds your bag horizontal and keeps it snug and from tugging on your stoma. The band has totally changed my life by allowing me to be more comfortable and confident with my appliance. It holding the appliance horizontal seems like it might be bad for keeping stool from leaking or being positioned where it would be bad for your stoma but it has been just the opposite. This band has an inner pocket that the bag rests in horizontally and the band is made of spandex type material. This stretchiness keeps the bag snug to your body and since the bag is horizontal it allows you to wear normal pants again and not just have the bag hanging and tugging on your stoma. It really is a lifesaver. There are different sites that offer these bands and they come in the custom size you need and different colors. They cost anywhere from 15 to 25 dollars and are worth every penny. I just throw them in the washer and they have stood up well to wear and washing. They truly have made life so much more normal for me. Try buying ostomy supplies off of eBay. You can get them at less than half what they cost from dealers. I sold some on there myself for very cheap because I had changed styles that I use and did not need the ones on hand that I had left over. That is why you find them on eBay. A lot of people change types or styles and sell the unused ones very cheap. I hope this info helps you. It takes about year but you will feel normal again with getting helpful things like the support band and some other garments that help with wearing an appliance. They make all the difference in the world. I promise. Take care and God Bless. : )

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 11/21/2010 10:52 AM (GMT -6)   
summerstorm- I am looking into the belly band you've been mentioning. Is it also called the Tummy Sleeve? You said it's by the company Motherhood? From pictures it almost looks like it would be too tight around the bag. Is this the case? Thank you!

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 11/21/2010 11:47 AM (GMT -6)   
put one on your Christmas list scool
Diagnoses: Colonic Inertia, Rectocele, Anismus
Surgery: November 9, 2010 - subtotal colectomy with anastomosis

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 11/21/2010 2:36 PM (GMT -6)   
I got a tummy band from Target in the maternity clothes department. I wear it during sex(sometimes) devil and during exercise. I also sometimes tuck my bag into my panties, but this is only if I wear extra tall undies because my stoma is pretty high.
 
 
I cant imagine having a colonoscopy and then ending up with a stoma. UGH What happened there? Do you have chrohns or colitis?
 
 
I have had my stoma since June 21st and I still notice it quite a bit. I am back to work though and this has helped me to integrate this new way to "go to the bathroom" into my daily routine. I have had 2 episodes while I was awake that I forgot about having my ostomy and the bag almost exploded. One of those times, I was laying with my husband and we were watching a movie and he noticed it, not me. I almost cried because I thought, I will eventually not think about my stoma 24/7.... turn
 
How long do you need to keep your ileostomy? Mine is a temporary loop ileostomy too, but I plan to have mine turned into an end ileostomy because I now have a parastomal hernia that will eventually need surgery anyway. Otherwise, I would just keep the temporary loop ileostomy. GRRR mad
 
Email me if you ever want to chat, Tracy
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


still a lot to learn
Regular Member


Date Joined Nov 2010
Total Posts : 33
   Posted 11/21/2010 5:12 PM (GMT -6)   
I had my perm ileostomy placed in Aug '09. I am getting better about not being so proccupied about it. I agree with the others that use a belt. It helps a LOT with the pulling feeling. I've lost mine and cheapo me doesn't want to spend the money for another, but I think I'm going to eventually cave.
crohn's since 1983, many surgeries later finally got an ileostomy in August 2009 (a life saver). meds: 6 mp, lomotil and immodium, vitamins. LIFE IS GOOD!

bearbear3
Regular Member


Date Joined Nov 2010
Total Posts : 61
   Posted 11/21/2010 5:57 PM (GMT -6)   
I have had Crohn's for the last 5 years or so (well diagnosed... I'm sure I had it before then). I was under a county health program in California up until last year when I moved to Florida. Unfortunately, my disability has not come through and Florida doesn't really have a program for people in my situation (no health care, no income). I don't even have coverage now, just really nice doctors who are still letting me come see them. So the year plus I didn't have insurance I didn't have meds either and I used to be on Remicade every 8 weeks, 4800 mg Asacol, 6MP, mercaptopurine and prednisone every day!!! So I went from that to nothing............ and my body kinda crashed because of it. When I finally got in to see someone who took me seriously my colon was so inflamed that when the air was inserted for the colonoscopy it just burst from the extra pressure...

Having a "bag" was my biggest nightmare. So waking up in intensive care with one was definitely a hard thing to swallow.

I am looking into all the ideas I've gotten here. I've already picked up some tricks from other HW members that make showers much easier (I was terrified to shower because the water made my tape and wafer come off easier). This place has really given me a place where I feel comfy talking about the things that are too gross to talk to anyone else about! Once I get a job I'm getting belly bands, an ostomy belt, and so many other things!!!

I'm also calling a few other suppliers tomorrow to get samples. I was told Hollister sends a belt with their samples so I'm going there... and other places so I make sure I have what works best for me! I'm hoping with all of that information I'll be able to find something that makes it easier for me.

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 11/21/2010 6:37 PM (GMT -6)   
bearbear -

I hope that you have the support from friends and family that can help you get a belt! It seems like it really helps out people a great deal.
Diagnoses: Colonic Inertia, Rectocele, Anismus
Surgery: November 9, 2010 - subtotal colectomy with anastomosis

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/21/2010 7:05 PM (GMT -6)   
bearbear, you should get in contact with ostogroup.org. they give supplies to people without insurance for just the cost of shipping. Some people are even able to get the shipping fees waived, which since you are also currently unemployed you may qualify for. Hollister, i am told by my WOC nurse, also has a free 6 month supply program for people without insurance.

I don't know what to say about the stinging as mine stopped around week 4. The pulling sensation also stopped for me around week 6 and now only happens when my bag is full. i guess maybe you are still healing? i wish i had some more advice for you that didn't involve you needing to buy anything. I hope it stops bothering you soon though!

As for normal things, it all depends on your healing process. I got back into a normal routine and going to my temp job at 7 weeks. I still get really tired easily and generally sleep for a long time every night. I understand the being scared because of almost dying. I have my colostomy because my colon perforated while i was in the hospital. and i've almost died from UC complications 2 other times. it does get better. Just stay postive and when its too hard to be positive allow yourself to cry or get mad until its out of your system. Good luck!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/21/2010 9:49 PM (GMT -6)   
i don't know if the company is motherhood, the store i got it at is motherhood, its a maternity band. And no these aren't tight. You can buy tight ones, but they don't hurt the stoma, but you shouldnt wear them right after surgery because it will hurt pressing on the incision and all. I have three or four of them, the tight ones i wear for exercise and certain outfits. I wear the looser ones for sex, and for other outfits. I dont wear them with all my clothes but i always wear one with a skirt. or if i am wearing a really form fitting shirt.
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/21/2010 9:51 PM (GMT -6)   
and it may be called the tummy sleeve, i really don't know, i just remembered seeing them when i was pregnant and when i got my bag i thought, hey i bet those would work and just went in the maternity store and bought one, but its funny because they ask you when your baby is due, and i always just say, i'm not pregnant i just like these to smooth out panty lines, which btw, they do a really good job of, lol. and don't make the awful muffin top, eep!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/22/2010 9:49 PM (GMT -6)   
summerstorm they are called belly or bella bands. i just got one from target, they are awesome aren't they? the target brand one is a cheaper version of motherhoods one called Be Band.
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 11/23/2010 10:14 PM (GMT -6)   
I didn't have a belt for a few weeks and made my own. It's not the safest plan but it worked fine for me.

I just bought elastic at a fabric store (or you could probably get it at walmart) and then just put a safety pin at either end of the elastic so that I could put the safety pin through the little tabs on the sides of the wafer that the belt goes through. It worked just fine! If you don't have money, this is a great option...the elastic is like $2.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/23/2010 11:48 PM (GMT -6)   
eek a safety pin near the bag, you are a brave woman!!! :D
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

ADHiatt28
New Member


Date Joined Dec 2010
Total Posts : 3
   Posted 12/1/2010 9:59 PM (GMT -6)   
I had my temporary ileostomy on August 12 and am awaiting my reversal. I am at the same place you are. I highly recommend the ostomy belt! I use Hollister (and I have no insurance) and the convex wafers seem to help with the stinging. My doctors have still prescribed me pain medicine for the burning sensation. My stoma is retracted and so any output scrapes over the skin, causing irritation, burning, etc. Evidently, I am VERY acidic and that is what causes so much of the stinging sensation - and my bowels are very active.

I still have my hard days and my good days. Some days I still cry when I think about it and am upset that I chose to go ahead with the total colectomy, j-pouch surgery. And other days I feel like conquering the world.
-diagnosed with severe pancolitis/ulcerative colitis in 2006
-tried asacol, lomotil, prednisone, bentyl, etc & nothing worked
-did Remicade for a year, at the double rate of 10mg/kg every 4 weeks; did not work
-August 12, 2010 had my first surgery: J-Pouch; 10 hours on the OR table and 24 days in the hospital
-currently waiting for my reversal and i CAN'T WAIT!

bearbear3
Regular Member


Date Joined Nov 2010
Total Posts : 61
   Posted 12/2/2010 11:49 AM (GMT -6)   
ADHiatt28

I understand the feeling. I'm just a month past you in surgery but mine was not a choice. I have crying days often but we have to remember that this is a better step for us. I have my cries, but I also have days when I feel better than I have in years. I had a job interview for a job today that I would have NEVER been able to do last year. It's amazing how something so life changing and dramatic can be, well..... life changing. If you ever need to talk or vent I'm here. It's an adjustment period. If I get this new job my FIRST purchase is an ostomy belt, followed by some belly bands and a few new outfits. Something that will accommodate my appliance and still be comfortable. We will find our niche and how best to handle this. And on days that we can't handle it we have this wonderful place to come to!!! I wish you happy days!!!
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