Am I passing Skin from my bowel?

[Paddy Holmes]

I've had Crohns for many years and now have an Ileostomy. Because I face forwards to empty my bag I can see what seem to be very thin threads of skin floating. I very rarely have a thick 'passage'. I've had some blockages over the years due to overmedicating and wrong food so am very careful. I also get what appear to be tiny little jellyfish:blush: type things( the first time I realised it was banana but since then haven't eaten any). I've had so much surgery that the docs have said no more surgery due to massive amounts of adhesions.
I'm just self medicating with food supplements and imodium and codeine phosphate to help slow things down ( a bit). I'm on Asacol and Colofac, imodium, codiene phosphate and anti depressant meds.
My diet is carbs and tiny quantities of fruit juice diluted with bottled water, skinned grapes and yoghourts.
Has anyone else had this or have any advice for me?

 

[Paddy Holmes]

no, I haven't been anywhere near the doc, just phone for repeat meds. The fact that they say they can't offer me anything else has led me( and my husband) to the conclusion that I have to deal with this on my own.
It's a bummer( pun intentended) but I'm not as bad as some so I just do what is within my capabilities...not much but we do hav a clean house,lol, and I make my cards which keeps me busy
I love that anyone can ask anything on this forum. I notice you and your little friend..we have 2, a whippet and a Patterdale who thinks he's a whippet 'cos she took care of him from 9 weeks. Total, dog freaks, both Cliff(my husband) and me!
Thanks for taking the time to answer the message.

 

[Terriernut]

I had Irish Wolfhounds in the past. We are now just down to our princess..Freya a 3 1/2 year old Irish Terrier. Last November I lost Chase 16 1/2 yo Irish Terrier, and in June I lost Joby, 19 yo German Shepherd. Major flare every time I lose a baby.

Paddy, I would sure be shopping around for another GI doc! (i am actually shopping now myself!)

 

[Paddy Holmes]

In a lighter note, my husband is crazy to get a wolfhound but we have a small house and I'd love a labradoodle some time and if greyhounds and whippets need rescuing then we have to give them priority!
In an ideal world we'd live in a big house with rooms designated just for the dogs. As it is we've ended up( purely by chance) with 2 small dogs who match our furniture!. Doesn't stop the hairs showing though!!!
We also have to take our age into consideration. I'd hate to leave a young dog behind when I go...
great chatting with you Paddy

 

[Terriernut]

What bowel do you have left Paddy? Have they tried you on entocort? just for the inflammation? Or the pred? Don't like to see anyone getting cancer, and you have plenty of love to give so don't give up.

 

[Paddy Holmes]

No I haven't been put on entocourt, They tried me on a drug which I had to inject myself 3 times a day( forgotten the name). It was like a bee sting which seemed to last quite a long time after the ***. The doc says I have very little small bowel and the large bowel is producing too much gastric fluid. Hence the massive amopunts of waste when I've eaten. The injection was to try and dry that up a bit but after 2 weeks I got a blockage and they discovered a kink in the bowel which is likely to cause blockages frequently if I'm not careful.The sip and drip treatment as well as putting up with being in hospital is just so miserable...I have a case packed now( my "just in case") so that if I have to be admitted poor Cliff doesn't have to worry about what to bring.
I hope you can see why I don't want to have a lot to do with docs!

 

[Terriernut]

Oh yeah I get the miserable and the case already packed. I think you should see another specialist though. seems like more than Crohn's or at least that is what my intuition is telling me.

 

[Paddy Holmes]

I'll talk it over with Cliff. He's a wise man and knows what I'm going through. I don't have many options here in Northern Ireland. The Health Service is superb here due to all the reparative surgery during the troubles but If they can't operate my feeling is what's the point?
You may be right and a tiny bit of me thinks you may be but, honestly I just don't think my body is up to any more trauma( nor my head!!!)
I do thank you for taking the time to chat with me and I'd be interested to hear about your circumstances. Do you have time?

 

[Paddy Holmes]

Sometime, could you tell me your medical history? x

 

[Terriernut]

I had my first flare in 1997, after Ziggy got bone cancer. She was my wolfhound, only 5 years old. Lost 30 pounds in two and a half weeks, no diagnoses but pred did the trick. Took asacol for years no major flares til 2009, perforated sigmoid. Believe it or not, it healed up on it's own pretty much. Then Chase died on the 8th of November and I was hospitalised on the 17th. Perforated sigmoid, and this time it near killed me!! So it was a bag or a body bag. Being the practical soul I am I got Stan. But not without a fight, apparently I am still an infamous character at the Luton hosp. Just had parastomal hernia repair surgery a month ago. Now I'm flaring again dammit. On pred and starting 6mp. That's me in a nutshell!

 

[Paddy Holmes]

That's some history and it can't be coincidence that your bad times coincide with loss of your dogs.Stress plays havoc witha healthy person's bowels as we all know. Poor you losing your friends so close to each other...will you adopt anyone else? They are fabulous company and seem to recognise 'bad' days! Little Buddy( Patterdale) is very in tune with cliff's and my emotions. Tess, well she's not the sharpest blade in the drawer but very beautiful and has a very loving personality. She's convinced Buddy is her baby and is very protective of him, potentially taking on Boxers and Alsations who get too nosey with him.
Back to your health...how does your Crohns/stoma affect your life? Are you able to live a normal life? Can you eat meals wit the family?I've found my interest in food has disapeared( and I was a chef).Toasties and pizzas play a large part, pasta and sauce( without onions) how about you?
it's kind of you to chat to me. Let me know if I'm too intrusive...
Paddy

 

[Terriernut]

Paddy, we are all here to help each other!

I live a normal life, work full time. I'm very thankful that I am able to do so! I'm also the most goshdarned stubborn person I know, so I wont go down without a fight!

I eat alot less veg and fruit and salad than I would like! So..I'm going with V8 juice, and smoothies. I cant manage anything else at this point, but I will find a way around just about anything! I eat alot of mexican food believe it or not. It's soft tacos for dinner tonight!! Tasty, mild, causes me no problems. I cope by having a wicked sense of humour when things go wrong, as they often do! And dust myself off and try another day.

As for dogs, as soon as I'm back healthy again, I'll rescue more Irish Terriers in need. I actually am in training to be an animal communicator as well. And I work with 'special needs' dogs. (pssst...I'm the one with special needs, the dogs and animals help me more than I help them)

As you are not feeling up to par, and your diet like mine is limited at this time, can you try the one bite method?? It really is fun, and it gives you something to look forward to, without usually alot of harm.

 

[Paddy Holmes]

One bite method? don't know that...Dog communicators I do know. My daughter has an innate knowledge of dogs and the local police sometimes ask her to help. She has an Akita...but he thinks he's a Jack Russell. Lurve Cesar Milan...he's coming to Belfast soon but I can't leave the house for long enough unless I fast.
Isn't it great being able to communicate with dogs...Buddy and Tess go mad when Cliff comes in as he walks them for an hour and a half, rain or shine. He's the Pack leader and I'm Mum

 

[Terriernut]

Ones bite of normal food. Keeps me somewhat sane! So if Grahame is having a tasty steak or something I have one small bite.

In training I'm also getting to work with wild animals as well, brilliant!!

I do hope that you can speak to another specialist, being housebound won't help you to improve your health, stress and depression are what gets us!

 

[Paddy Holmes]

wise woman! Thanks for chatting. Love to your furry friendx talk soon x

 

[Carrie630]

My mil is currently in a flare and having a lot of trouble. She just had to have tunnel surgery to get a bunch of stones out of one of her kidneys, and then she had to continue to have treatment to break the rest up! She wasn't allowed to start (new) treatment for her flare until the kidney stuff was taken care of, and because she's old and has had it all her life, they don't seem to offer her many options other than deal with it. I think it's possible that some doctors will be less aggressive with an older person because "they've already lived their life and it isn't worth the extra healing time" or what have you. I know it was like that with my grandpa when he had cancer. They were like, well you're old, you might as well just let it run its course :O really?! I keep telling her the same thing I'm about to tell you - you need to find a new doc if at all possible! Maybe your meds need a change up or something. They do stop working after a while for most people. good luck!

 

[Spooky1]

Hi Paddy,
yes i have skin, in fact i have whole lengths of tubes come through sometimes, its rather see through with a few little blood lines in it. but because its open both ends it sometimes just doesn't flush away but swishes about. its generally the strictured area where flaps of skin suddenly close the intestine, which is hidiously painful until after a couple of days the diarhea behind it forces the skin to peel back and through it comes.

guess what? my docs are a bit complacent with me too. i also have adhesions and lesions from surgery. i also know that as soon as i start eating i start visiting the loo, which apparently is called 'gastrict dumping'. thats another useful thing i learned on this forum. god, it answers so many questions for me, i am so pleased i found it. i hope i never have to have an ileostomy as i'd need a dustbin bag attached with the amount i produce. i don't think a stoma bag would contain this amount of outflow. i suspect this is when the bag gets forced off and leaks everywhere.

i know how down i get with this illness, i'm pleased in a way that you also expressed how life is for people like us, cos i feel guilty but life just isn't really worth much for me. not that i want self pity as an emotion but i wish i was just plain boring normal. alas some people have bad health issues, we are two of those, along with all other members here.

will reply to you pm soon paddy,
try and stay cheerful, at least for the dogs, lol.
Love
Diane

 

[Paddy Holmes]

Am I passing Skin from my bowel? Reply to Thread

Thank you all for making me feel more positive about what is happening to me. It's not the sort of condition that's talked about in 'polite society' so until I found the forum I felt like a lost soul. One of the things that I care most about is the number of friends/acquaintances I've lost. I'm not able to go out for a coffee or a meal and people drift away after you've refused invitations for the enth time. Not that I blame them, but it does get lonely and the temptation to stay in bed and read a good book is sometimes overwhelming. At least I'm making new friends here! Thanks for your replies x

Interesting that you are also passing wierdies! Do you have an Ileostomy? Sometimes I can pass what I ate just 20 minutes ago, it's that recognisable. Meds also can pass straight through so I wonder sometimes whether I ought to stagger the meds so at least half of the dose gets through! Asacol and Colofac are the worst for that, maybe it's the coating...

I used to take Pentasa but it gave me wild migraines. Has anyone else compared Asacol with Pentasa and is able to give an opinion on whether one is better than another? At least Pentasa stayed in the system long enough to work.

Love to you all, it's a horrible illness, not one that you can easily explain to strangers. I just wish they'd do a bit more work on it. Not life threatening so not high on the list!:voodoo: