C3Life Community Forum / General / Family, Friends & Caregivers Forum

horendous weekend

elizabeth — Mon, 15 Dec 2008 14:27:32 GMT

hi everybody my daughter has just been in hospital this weekend with gastroentitus,needed i.v fluids,the leaks have been terrible her output has been like water shooting out of a hosepipe so the bags have just leaked constantly,we went through at least 30 bags as we could not get them on fast enough so a lot of bags got ruined before even using them,we ended up with feaces everywhere.Does anybody have any tips on how to deal with this when it happens or is it normal when you have a bug she also had terrible tummy pain is this what to expect when you get this type of bug when you have an ileostomy.Around her stoma site is like a large burn(only noticed tonight at home)it was not ther this morning,put cavilon on i hope it inproves overnight

hppy christmas

elizabeth — Tue, 23 Dec 2008 14:10:26 GMT

hi everybody,wishing you all a wonderful christmas and a happy new year.x

Coping with a Teenage Ileostomy

Lndamy — Fri, 28 Nov 2008 13:46:00 GMT

2 Weeks ago today, my son was in an auto accident. He was brought to Umass, with what appears to be a bruised spleen, and a laceration to the his liver caused by his lap belt (seat belt). The liver injury was considered a "class 4 injury" with an automatic observation period of 4 days in the hospital.

On day 2 of his observation, he still could not eat, he started to spike a a fever, and his stomach started to get "extended". The morning of the 3rd day, his surgeon told us he wanted to go in with a scope and look around, nothing had showed on the cat-scan on the day my son come to the hospital, but with his condition not improving, they wanted to look around.

My 17 year old son was great with the idea, he didn't feel good, knew something was wrong, and wanted it fixed. After about an hour in surgery, another Dr. came up, and explained things were worse then expected. The organ that supplies blood/blood vessels to the bowels had been torn away in some areas, because of this some areas of his intestines had died. they would have to cut out segments, and do an Ileostomy.

We have dealt with sepsis, and 4 surgeries since that first one on Monday 11/17. The many surgeries are because of the swelling not going down, and his body not being able to be closed up. We are scheduled for a 5th surgery this coming Monday. My son has been in a drug induced coma (or the tried to anyway - he fights this pretty hard) since 11/17 attached to numerous IV's and a ventilator.

After today's surgery, they were able to complete the Stoma (not sure if that is the right word), but still could not seal up the abdomen wall. They are discussing reducing his meds, and weaning him off the vent tomorrow. When my son does become conscious, He will find out for the first time, what has happened over the past too weeks.

I know this is only temporary, for 3 to 6 months - But to a 17 year old boy, graduating in June, this is not going to come easy. I have no clue how we are even going to be able to tell him what he now has in store. There was no discussion before hand, no advanced warning. He will wake up after over 2 weeks to find he has to get adjusted to a new lifestyle for a period of time. I was hoping to find other parents or teenagers to who have to have this procedure due to an accident or injury, and get advise on how to help my son cope with what has happened.

Thanks.

how do you feel about scars?needs support to change bag.

elizabeth — Mon, 06 Oct 2008 13:36:25 GMT

my 13yr old has got several scars ,she was cut from hip to hip for ileostomy,a5inch scar across her tummy next to her belly button (appendix then cecostomy)and of course her stoma,a large scar through a hernia.WE have just been told she will need to be cut all the way up her tummy for next big surgery next year,i know this may sound silly considering but how do you all feel some years later.

On the whole she is not doing too bad,is having a few problems with her bag in the early hours it seems to half blow of with gas i think,it means a shower and bed change so she is naturally tierd,should i check it during the night and let the gas out?I use disposable sheets under her sheet so this saves her mattress but bedding still needs doing,luckily this does not seem to upset her too much.

It has been 8 weeks now,she still needs me to change her bag for her but she emptys it herself 2 people have been trained to help her at school if it leaks or comes of(it has 4 times)I am at present on sick leave to give her the support she needs and am prepared to leave if i have to,i just wonder if she will ever feel confident enough to do it herself,in so many ways i just wish it was me and not her.

please help my mum

reeree — Thu, 04 Dec 2008 04:10:47 GMT

hi, this is my first post, im worried about my mum she had an ileostomy about 9 months ago because she had anal cancer, she since been given the all clear but yesterday passed stools through her back passage, does anyone know if this is normal, i will be grateful for any advice, thanks

Trying to help husband cope!

Katsam — Sun, 30 Nov 2008 16:35:46 GMT

My husband had 15 inches of colon removed in mid-Sept. He has most of it figured out, but he has burning we can't figure out. We were told that the colon has no feeling, so it has to be the skin right around the stoma.

He says he has tried to keep a record of his food, that showed no pattern. He changed his base plate, but also says it is not that. Just some days it burns and stings, some days not. The days it burns, he can't do anything, just sits and hurts.

His surgeon can't help, so I figured I would go to the people who know!!!

Thank you.

Help For My Dad

Puppypants — Fri, 28 Nov 2008 04:30:26 GMT

We are desperate for some advise to help my father who had ileostomy about 8 weeks ago. We cannot seem to keep his bag on for more than a couple or hours at a time! His stoma is nearly flush with his skin, and oval shaped. He has a couple of folds in his skin near his stoma, and the leakage seems to appear in those areas.His poor skin is so irritated from all the bag changing, and he is humiliated by all the mess it creates. He actually had to go to the emergency room last weekend so we could get some help with it, but did not receive a long term solution to the problem. A ostomy/wound care specialist saw him in the hospital, but we are still changing his entire system every couple of hours. Any advice would be greatly appreciated!

colon and 3/4 of rectum have to go

elizabeth — Fri, 21 Nov 2008 07:41:01 GMT

hi my daughter also has to loose 3/4 of her rectum as well as all her colon ,the surgeon is still very hopeful about reconnecting and getting rid of the bag has anybody any advice or experiences on this,also has anybody had the amount of surgery she has at 13 and gone on to have children?any input would be great.

What can I say?

AdrienneFH — Tue, 11 Nov 2008 16:06:24 GMT

Hello,

My boyfriend has had a terrible last few weeks. He has had colitis for about 3 years now, but a few weeks ago he started having some hemorrhoid-like pains. To make a LONG story short, he was misdiagnosed a few times so what could have been a somewhat simple thing to take care of is now either a terrible infection in his rectum or a vicious outbreak of crohn's. Basically, the doctors are saying that the infection or crohn's has done so much damage to his rectum/anus that it's basically no longer functional. Now, they are talking to him about a colostomy or ileotomy. After all of the pain he has gone through in the last few weeks, to now hear that he may have a colostomy for the rest of his life (mind you, he's only 23!) is just heartbreaking to him, and to me and his family. Now, as his girlfriend, I am desperately trying to find the right words to say. I want to help him see the light at the end of the tunnel for this situation. I want to help him see that he can still live a normal life and do the things he loves to do (working on cars, mostly!) and that this doesn't mean he can't still follow his dreams and be the same person he was before. I just really need some encouraging words for him or some websites he can read up on to help him feel better about this.

Thanks in advance!

Adrienne

Leaking, itching........suggestions please?

Lovemymom — Fri, 31 Oct 2008 20:07:21 GMT

I wasn't sure where to post this. Posted it on the Supply section I think, but it didn't look like that area was getting much action, so I thought it might be seen faster over here. Thanks

My Mom's urostomy was 3 months ago. She was discharged by the home health care nurse several weeks ago and is flying solo now. Before she left Mom, the nurse ordered her a good sized batch of Convatec one piece bags. Mom has been having quite a time of things with a lot of leaking. She says she's never sure where the leak is coming from. The nurse suggested some sort of 'cement' for around the stoma. Still there is leaking. Not with every bag, but probably every other one. I thought maybe it was a fault group of bags. FINALLY got Mom to fill one of the "leaky" ones with water to see if it was the bag......no water leaked out. So, I'm guessing it has to have something to do with the adhesive or the way Mom is applying. Of course, she is insisting that it's a very simple procedure and how can she make a mistake? She also says she's using the cement, so there should be no leaking. HELLO..........BUT THERE IS STILL LEAKING!!! She keeps saying "It's all part of the process. it will go away." I'm not so sure.....if she doesn't figure out what the problem is.....how can it go away?

She also said that her stoma itches and the skin under the wafer itches. She insists there is no rash, but I'm wondering if maybe she just can't see it.

Any suggestions?? Having been discharged from home health care and no appointment to see the surgeon again until January, she kinda feels like an orphan with nobody to turn to with her questions/problems.

She's annoyed with the whole thing. She doesn't want to go out of the house for fear of leaking. I think she just wants it all to go away without her having to do anything about it. Of course, if she doesn't do anything, my fear is that she will get a terrible rash and things will just be a mess.

Thanks!

has anyone had all colon removed then reconnected?

elizabeth — Wed, 15 Oct 2008 13:05:06 GMT

hi,just wondered if anybody has had all their colon removed then had small intestines connected to the bottom end?this is what has been mentioned to us for our daughter,basically what goes into her bag now (ileostomy)is what she has to part with from the bottom end,it seems a lot to us,how successful is it really?unsure if her rectum is going or staying.

Veteran ostomy patient

gramhunny — Mon, 27 Oct 2008 09:28:55 GMT

I am looking for a veteran ostomy patient to come and talk to my mother, who has had recent surgery and believes it is the end of her life. Middleburg Hts, Oh is the location. Am desperate to find a support group who does this.

Official Invitation for Non-Ostomates

fuzzy — Wed, 28 May 2008 22:11:13 GMT

Hi All...Thanks to 'definite', I stopped procrastinating & decided to post this topic. I often wondered if other Ostomates had family/friends who view this forum? We focus so much on ourselves...what about those who rally around us? Friends/family, often our caretakers. I believe that they should have the opportunity to share their views...fears, concerns, knowledge...maybe some humorous stories? We talk about our frustrations? Often, it's just as, or even more so, difficult for the non-ostomate. 'definite' joined us to help his dad & I believe that we will learn quite a bit from him (such as not ending a sentence w/ a pronoun...ha ha :hehe:!). So, if you're a non-ostomate reading these posts, please feel free to join us w/ your opinions! Thanks...:)

Post Surgery for urostomy

lorikoch — Sat, 11 Oct 2008 19:15:13 GMT

My dear older male friend had urostomy surgery 10 days ago. He has rented a room from me for 15 years. He is not doing so well. It is getting a little better, however, should he be having bloody leakage from his penis still. Does anyone know how long that lasts. The doctors told him it was normal 3 days ago when I picked him up from the hospital. Now he just said it really leaked out. Just wanting info to relieve some of his stress. Thanks

FREE urostomy supplies (Shipping free, too)

Angel — Sat, 13 Sep 2008 08:59:26 GMT

Last Sunday, my husband went to where he will never need urostomy supplies again. The Seattle VA will not take them back. I listed them with all data in my profile two days ago but didn't know how to send it on. Before I do that much work again, let me know that someone is interested. I do not want to throw away unopened and expensive boxes of 2-part system (pouch and wafers) and drainage bags, etc. Let me hear from you. Thank you.
Angel

playing intermediary to parents

hopeful — Tue, 07 Oct 2008 12:25:36 GMT

My dad (60 yrs old) has a permanent stoma and has had it for about 5 years. He has had difficulty getting used to his new life and is very depressed. It goes up and down but seems to be getting worst. He sleeps a lot, rarely leaves home, and his relationship with my mom is falling apart. They each come to me, which is difficult for both. I think most of the conflict stems from his depression and his stoma. He has closed himself off from the world and I don't know how to bring him back. He doesn't take any responsibility for his lack of action and trying to move forward. Instead he uses his stoma as the excuse for everything wrong in his life. It's hard for me to be the referee for them. I know they are both suffering and I want to help. What can I do?

what is proctitus????????

elizabeth — Wed, 24 Sep 2008 07:39:40 GMT

proctitus has been mentioned a few times to me regarding my daughter and i have not got a clue what is it??

Hard to Fit Ostomy

Mellymel — Tue, 23 Sep 2008 07:32:54 GMT

My ostomy is oval and dimpled at the base where it drains. I have trouble finding a product to fit. I have used convex products, paste for filller, adhesive rings for filler. I am now using a one pouch system and changing it daily. I also use a skin film barrier to help with my sensative skin. Does anyone have any suggestions? Thank you, Mellymel:w00t:

advice on emptying pouch needed

elizabeth — Thu, 18 Sep 2008 14:23:29 GMT

my daughter is 13 and has an iliostomy,when she emptys it she kneels on the floor otherwise it splashes eveywhere which is fine at home but i hate to think of her in a public toilet doing this any suggestions she is 5ft6inch.

is this blood normal???????????

elizabeth — Sun, 21 Sep 2008 12:27:22 GMT

can anybody help last wednesday i found old blood in my daughters underwear did not worry too much but yesterday her underwear was black,and today tiny amount of red blood,we were told to expect mucus is this color normal she is 13 had ileostomy about 6 weeks ago.

I thought i would try here before ringing stoma nurse

any parents of children with ileostomy??

Prestonsmom — Tue, 22 Jul 2008 20:35:25 GMT

I am the mother of a very sweet 4 year old boy with an ileostomy. He suffers from severe IBD. At 6 months he had to have a total colectomy with ileostomy placed...then at 2 almost 3 years he had a reversal, ileoanal pullthrough. He had recurrent pouchitis and had to have the ileosomy placed again. He has been an absolute trooper through everything and is doing very well now...he has his ups and downs of course, but for the most part he is a healthy happy little man. Because he is so young he has completely accepted his stoma as part of him....proud of it actually :). As a family we have never considered Preston's ileostomy as anything other than a blessing...he is alive and well and without it that just would not be possible. He knows not everyone has one, but we have never really treated him different....we all have our quirks...that's his. He is so very confident and open and happy...of course his main social interaction so far has been with myself (mom) dad and big sis. He has a few friends his age, all of which I am friends with their mothers and his history is common knowledge. I guess what I am getting at is that preschool is coming up and his social interaction is no longer going to be closely monitored by mom and dad and kids can be mean...I dread the day he comes home upset that some kids from school made fun of him or made him feel bad about his stoma. Right now he has absolutely no shame or modesty about his ileostomy...he doesn't realize that people may look at him differently because of it...we never have so why would anybody else?

I would really love to speak with any other parents going through similar situations, I know this may be a longshot, my son's condition is extremely rare...he's so young, but I figured it was worth a shot sometimes talking about the ups and downs is easier when it's with someone who can truly understand and maybe even have some advice or input...

Need words of wisdom

Lovemymom — Wed, 20 Aug 2008 20:44:44 GMT

just typed all this and lost it!!! GRR!

Mom is driving me crazy. She did not drink enough despite me reminding her and warning of the consequences. She got an infection. Refused to admit it had anything to do with lack of liquids. I think she has started to increase, but still is not drinking enough. She has been told numerous times that she needs to empty the urostomy bag when it is 1/3 to 1/2 full and yet i can sit there with her for hours and hours and she won't even check to see how full it is. When I remind her, she pretends she doesn't hear me. She will finally go empty it. I remind her again of the importance of emptying it often.

She seems to be refusing to take responsibility for this new way of life. It angers me and frustrates me and she has become nasty towards me any time I even mention anything that she perceives as me "telling her what to do." Actually, today she was nasty about numerous things.

I'm sure she must be a bit angry, depressed, scared, etc. But this doesn't mean she doesn't have to drink her liquids or empty her bag!!! I have no idea how to get through to her.

Any suggestions? How about when she is just being nasty and ordering me around or yelling at me for any and every little reason? Do I yell back? Do I walk out of the room?

HELP!

Thanks!

please help! my grandmother needs an ileostomy, but...

tangerine71 — Sat, 06 Sep 2008 05:45:12 GMT

hi... my 77 year old grandmother is in dire need of an ileostomy due to severe ulcerative colitis. the doctors have tried everything else, so this is the last resort. anyhow, the reason i'm writing this is because she is sitting on the fence for a number of reasons and i'm trying to find info. that would help her come to the right decision. she feels that she is too old to "learn" how to care for the stoma and change the bag, etc., since she has a hard time figuring out the simplest gadgets anyway, like her vcr, for instance. also, she suffers from macular degenerative disease and is slowly losing her eyesight, so that adds a whole other dimension of worry to the situation. before her uc took over her life about a year ago (before that, she lived with it for 30-something years without a glitch), she was a spry and active woman. in all my research, i can't find too much info. on elderly people who have undergone this complicated surgery. so i guess my question is, is there anybody out there who has a similar experience and can offer any advice, life stories, etc? my grandmother is the rock in our family, and we need her around for as long as possible!

How long does it take

zeba1968 — Fri, 29 Aug 2008 12:13:59 GMT

My sister just found out she has Colon Cancer she is 40 ..They did a colostomy on her 8/25/08 as she is in stage 5 . They had her on clear foods at first and then moved her to simi clear..do the colostomys ever fail? I am just worried I am glad I stumbled onto this site

Reversal that didn't happen!

lorac — Sat, 30 Aug 2008 04:37:10 GMT

After finally deciding to go for a reversal or closure as it is now known. I waited patiently for over a year for it to happen. I thought it would be simple and was looking forward to being back to normal. I had just returned from holiday and was greeted with a letter informing me that I was due to be in hospital the next day at 8am. It was a mad rush to sort childcare out for my 8 year old daughter, so didn't have much time to think about the pending operation. I had my reversal on the Saturday and all was well. By Monday nothing had happend I was beginning to be sick continually and could not keep a swallow of water down. By the Tuesday I was weak tired and began to have the symptons of my previous Ulcerated colitus. For some reason the operation had not worked. After having further x-rays they found that I had adhesions which needed to be opened. The hours spent in bed feeling as I had done for many months before my colostomy really made me think. I was in a ward with people with cancer who were alot worst of than me. I wanted my reversal for my own vanity reasons, this I had come to realise, and purely for nothing else as I had had no problems what so ever. They decided to do an emergency operation. I asked to speak with the surgeon, and said please give me my stoma back I could not face the thought of having to have even more operations if this was not a success. He was not happy to do this as he said the reversal should work this time. I stuck to what I wanted and said this is what I definitely want 100%. So here I am I have gone a full circle, with a brand new stoma, no problems still fit and healthy. I hope to return back to work early September. I am happy and now content, I am alive, and now realise I wanted my reversal for all the wrong reasons. They have told me that I can try again. Think me and my stoma are in it for the long run! If you are in the process of thinking about a reversal then go for it, I know many people who it has worked for. :)

Carol Worksop Notts England

What is a Ilestomy ?????

Janner — Tue, 02 Sep 2008 17:35:28 GMT

I am uncertain what a Ilestomy is. I know what a Colostomy and a Ostomy are but not a clue at to what a Ilestomy is. I would apprecitate some input. Thanks and God Bless......Jan;)

First infection........

Lovemymom — Sat, 16 Aug 2008 05:50:56 GMT

Well, it's less than 2 weeks since Mom's bladder removal and she already has a kidney infection. It was my opinion that she was not drinking enough fluids. Nobody can stand there watching her 24/7 and she kept saying she was drinking, but yet when I'm there for 2.5-3 hours, I will barely see her take a sip. She'll tell me just had a whole glass before I got there, or that she will drink this glass of iced tea as I'm leaving. I'm so grateful that she is in rehab and they are at least monitoring her vitals. I think she would have fought me if she had been at home and I wanted to take her to the hospital or doctor for her fever.

Perhaps NOW she will believe me (and listen) when I tell her to drink more.

Thanks for listening to my rant.