Need help from ileostomates

Hello there Hopeso, I have been wondering how you have been getting on.

I know it might not seem like it at the moment but I feel confident that you can over come these problems that you have. I not only have my own experiance but I have also picked up lots of information from reading about other ostomates experiances on Message boards such as this one.

I can't promise that I have all the answers but I will help all that I can.

1... "Extremely loose stools sometimes.  Causing rapid heartbeat and fatigue. "

It is an Ileo you have yes? The output generaly should be a sort of apple sauce consistancy. When you say loose,are you saying "watery"? The rapid heart beat could very well be due to low pottassium.(bananas are full of potassium and they also thicken output) Did they check you for this when you were in hospital? Have you got "all" of your small bowel left? I ask this because if you no longer have the very end the "ileum" then it might be harder for you to absorb certain things. I know that that B12 is definatly absorbed in the ileum.

2... "Itchy yeasty on skin around tape now under tape." ...I am no expert on this as I have never had this problem. I have heard though that as well as the eakin seals, somthing  called Cavilon spray is very good. it is non sting, It gives a realy good protection to the skin from adhesive and tape but at the same time it helps the flange to adhere to the skin.Ask your stoma nurse about it. Maybe you could also try to eat naturel yoghurt as often as you can(full of friendly bacteria) to help to fight off the yeast (you could maybe mix the yoghurt with the bananas) 

3... "I am chewing things well but worried about blockages. Sometimes I will swallow a piece of grissel and then I wonder if it will go thru or not."

Chewing your food well is somthing that you will always have to do while you have an Ileostomy. But after a while it becomes almost automatic and you do start to feel much more confident with this as time goes on. I had one experiance of a partial blockage and I know that it was my own fault,I hadnt chewed some white cabbage properly that had been in a salad. I think I have learned my lesson lol. In general I eat pretty much everything that I want to.

4... "When the surgeon sewed up my bottom he moved the whole area forward and I don't know how I will be able to be with my husband again in that special way.  I offended the surgeon, I fear, when I mentioned this to him.  If the snow storms stop, I will go see a gyn soon."

Ok, sorry to get personal here but, are you saying that you have tried to be intermate and couldnt ,or you feel as if you wont be able to be intermate?(sorry about my spelling)

Either way, I would like to say that 7 weeks isn't all that long when you have had such major surgery as you have. Not sure if this will help you but I have found that sex feels the same for me as it did before. This realy surprised me because I new that everything had to a certain extent shifted and was now at a different angle to what it was before. My main worry was that I had a lot of vaginal bleeding that went on for 7 weeks after surgery(so getting intermate was a no no for me at that point anyway) I did worry "the first time" but everything was fine. Ask your husband to be patient with you, and hopefully he will be happy to just cuddle for now until you feel that the time is right.   

5... "Still trying to find a good fit on appliances.  Have been in a study for eakin seals and got three free ones to do the study.  They did good, but now I have to pay for them if I want more.  I have a dip one one side and a hump on the other, which makes it difficult to seal up the area. Currently I take a coloplast strip, and build it up on the dip side, then put a circle of it on top of that going around the stoma.  I have to be getting more than a couple days out of these appliances."

I was very fortunate in that the first bag I tried was the right one for me. I do realy feel for you and others that have such a problem getting a good ftting apliance.    There is a "ConvaTec  Moldable Convex Wafer " which I have read is very good for uneven places and dips. I don't know if it will be any good for you but it might be worth asking your stoma nurse about it or even call Convatec and ask for some samples.

Also, if you found the eakin seal to be good ,in the long run you might find it pays you to buy them because that way you have more chance of saving money on your bags because you wont get through as many per week. Also, I know that some people cut the eakin in half and strech it around the stoma. That would be another money saver if it was possable for you to do that.

Obviously I wasnt there when you say that you feel you offended your surgeon when you mentioned your intermacy fears. I would have thought though,that he must have heard this many times before from worried patients,so try not to worry because it is your feelings that matter in this instance and if he doesn't understand this then I think maybe he needs to work on his bedside manner. I was thinking similer about your stoma nurse too. She is there to help you,its her job so never feel like you are being a bother. You have every right to find the best most comfortable apliance that you can,and one that doesnt leak. if she cant realise that then she is in the wrong job.

Not sure if any of the above will be of any help but I hope that it will. Don't feel guilty for feeling depressed about things,its perfectly understandable after what you have been through and are still going through.

Take care and stay in touch

Sue

PS, I forgot to mention the immodium. In my opinion it is best if you speak with the doctor first about this. mainly because I think it is better to find out the reason why you are having such loose output to start with. Once you are clear on that then maybe it will ok for you to go ahead with it. In the mean time,ask your stoma nurse(I know it seems you will have a list of things but it doesnt matter because getting the help you need is what is important) ask her to get you some samples if she can of some of those gel things(sorry the name excapes me)they look like little pillows,you put one in your bag and anything watery that touches it will instantly turn to a thick gel like substance. There are other things on the market that do similer too.

 

1. Extremely loose stools sometimes. Causing rapid heartbeat and fatigue

Looser stools are to be expected 7 weeks out from your op. Hopefully, as time goes on, it will become thicker (at best a toothpaste like consistency) as your small bowel realises it must do some of the jobs (ie absorb some water) that your large bowel used to do.

The rapid heartbeat and fatigue sounds as though it's due to dehydration which would come hand in hand with the loose stools. Make sure you're drinking enough to allow for the loose stools.

2. Itchy yeasty on skin around tape now under tape. They gave me a pill to take for yeast, but don't want to take it because my liver was messed up from the ulcerative colitis and this yeast pill is hard on the liver. I am using the powder for yeast. I put it on under the tape and so far the tape is holding, but this is the 2nd day and I am starting to itch. How can I medicate this when it is covered. Do most of you use the powder or the pill.

Diflucon is good for yeast infections. If that's the tablet you can't take, then I'm guessing you're using Nystatin (sp?) powder. You will need to
change more frequently so you can use the powder on the yeast infected parts.

3. I am chewing things well but worried about blockages. Sometimes I will swallow a piece of grissel and then I wonder if it will go thru or not.

You will know if you have a blockage - there will be severe pain as well
as little or no output. Apparently food blockages only account for about
10% of blockages, adhesions account for the rest. For more info see http://www.ostomates.org/living/living.html#block

4. When the surgeon sewed up my bottom he moved the whole area forward and I don't know how I will be able to be with my husband again in that special way. I offended the surgeon, I fear, when I mentioned this to him. If the snow storms stop, I will go see a gyn soon.

It affects some people and others it doesn't. This is a highly individual thing. Don't worry about offending your surgeon - you hired him, he works for you :)

5. Still trying to find a good fit on appliances. Have been in a study for eakin seals and got three free ones to do the study. They did good,
but now I have to pay for them if I want more. I have a dip one one side and a hump on the other, which makes it difficult to seal up the area. Currently I take a coloplast strip, and build it up on the dip side, then put a circle of it on top of that going around the stoma. I have to be getting more than a couple days out of these appliances.

coloplast and Hollister strips are a cheaper version of the Eakin Seals if you have to pay for them. You could also try experimenting with different appliances and manufacturers to see if others give you a better wear time. Manufacturers are more than happy to give out free samples for you to try.

15. I am in some kind of depression now. Not being able to have relations with my hubby, is so bad. I want some kind of normalcy, but I feel like my life is never going to be normal again. If there are some of you out there who have any of these issues, and dealt with them,and come thru, please tell me that there is light at the end of this tunnel. THanks, Hopeso

Depression after ostomy surgery is completely normal. At least half go through it. If it keeps on for some time it might be worth asking the doc for an anti-depressant to help you through this time.

You're only 7 weeks post op so sex is probably out of the question for you as yet anyway. Don't be so hard on yourself. You need time to heal. You've just been through a very major surgery. Docs don't usually recommend you go back to work for at least 6 - 8 weeks so resuming sex within that time would seem unreasonable too.

You should join an ostomy support group too. If you're in the US, have a look at http://www.uoa.org/chapters_states.htm for your nearest chapter. If you're outside the US, let me know and I'll try and point you in the right direction.

Good luck.

Shaz

http://www.ostomates.org