Stoma Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Yeah I managed to resist it hehe I would rather not die on holiday. And it went ok it managed to squish it's way out haha.
 
Thought I would update for the fun of it haha. Having amazing time yesterday we had Carls Jr (if you don't know it's like mcdonalds but better and more American ;) and omg it was good. I didn't see the onion rings in my burger so that kinda upset my stomach a bit but apart from that it was all good. I'm gonna cook British pancakes for breakfast today and show them how much sweeter they are in America hahaa :)
 
Ki3 said:
Thought I would update for the fun of it haha. Having amazing time yesterday we had Carls Jr (if you don't know it's like mcdonalds but better and more American ;)
Click to expand...

The only thing more American than McDonalds would be a Bald Eagle clutching a Big Mac.
 
I love that the "more American" comments are both from non-Americans! Hahaha!

However, I agree with vonfunk. As a general statement, McDonald's is about as American as you can get.
 
I thought White Castle was pretty American, with their wee little baby burgers that you have to order a dozen of...lol That, and Cracker Barrel (omg, I loved Cracker Barrel)!
 
Lovely to hear that you are having a good time. Don't be too laissez-faire about what you are eating: we don't want you not being able to enjoy you holiday fully.:hug:
 
I'm kinda worried about the flight home though I hate flying anyway but on the flight here I took like 5 bathroom trips and I didn't sleep at all and I want to not have to worry as much. I can't swallow Imodium, if I am hungry it actually makes more output somehow, and I don't know any foods that slow it all down
 
Hi everyone,

I'm a 22 year old female and was just recently diagnosed with Crohn's disease in the perianal area this past January and things have progressed relatively quickly. I've had three surgeries to remove abscesses and one to have 3 drains placed. I currently have 2 setons in place and I'm receiving remicade every 8 weeks, taking 6-MP daily, and on flagyl/cipro 2x daily. There has recently been talk about getting a bag placed temporarily to help with the healing process and I'm interested in knowing about your experience's and how it changed your life?

Any advice or stories would be greatly appreciated. Thank you :)
 
Hi Mallory, fistulas were one of the reasons I got my ileostomy. Mine is permanent. It gave me a chance at life.
 
Hi all.

I have been advised I need to have total colectomy and an ileostomy due to very aggressive crohns disease that is not responding to conventional meds. The disease has spread quickly from what was isolated to the TI to the whole of the large bowel. I have been in the current flare for over 15 months with multiple admissions, this current one being the longest as have already been hospitalised for 6 weeks due to not being able to eat. I currently have a Picc line in situ and am being fed TPN via the Picc over 20hrs a day. I have previously (6yrs ago) had a colostomy and reversal for a difficult to treat perianal fistula.

My questions are:
Has anyone else gone through the same or similar and can you offer any reassurance that a total colectomy is the right way forward.
Can anyone think of an alternative treatment/surgery? Have tried Aza, 6-mp, Humira, pred. 3 serious allergic reactions to these meds and also developed swollen cervical lymph nodes to neck requiring excision biopsy.

I am grateful of any replies and support offered.
 
@tracyandkevinp

I needed an ileostomy for aggressive Crohn's in the colon and rectum, but it changed my life around for the better. I was also not responding to conventional drugs (or alternative medicine), but there was too much damage to be healed and an ostomy was my last chance to prevent further problems (I had already been perforated by the time I reached surgery).
 
Thanks VeganOstomy for the information.

I am pleased to hear that an ileostomy worked for you and you have had a good outcome. Did they remove any bowel or did the make it defunct? I am curious to know as its in my mind that with a total colectomy there is no going back if a miracle cure were to arise in the future.
 
tracyandkevinp said:
Thanks VeganOstomy for the information.

I am pleased to hear that an ileostomy worked for you and you have had a good outcome. Did they remove any bowel or did the make it defunct? I am curious to know as its in my mind that with a total colectomy there is no going back if a miracle cure were to arise in the future.
Click to expand...

My entire colon was removed Aug 2013 and my rectum was removed Nov 2013. There was no chance of hooking anything back up or going with a j-pouch, since I have Crohn's, but things are so much better and I'm glad to finally have my life back.
 
Wow, you've certainly been there and got the t-shirt. It sounds like you know exactly what I am facing. I don't know if you felt the same, but I am somewhat relieved to know that at last there should be respite from the pain. I commend you for staying positive and offering support to others. May I ask how you were after the surgery, did you have keyhole or open surgery and how long did it take for you to fully recover? I would understand if you felt I was asking too many questions or if you didn't feel able to answer.
 
tracyandkevinp said:
Did they remove any bowel or did the make it defunct? I am curious to know as its in my mind that with a total colectomy there is no going back if a miracle cure were to arise in the future.
Click to expand...

Hi, I've not really been in the position you're in, as for me the choice to have an ileostomy was easy - I was pretty certain it would improve my quality of life and it did. However, I just wanted to mention something about the possibilities of reversion. You can have a temporary ileostomy and later have it reversed, but only (as far as I know) if the rectum is not removed. So it would depend upon how the disease is affecting your rectum.

But both my surgeon and stoma nurses have told me that a reversible loop ileostomy is more likely to give you problems than a permanent end ileostomy. I've had two loop ileostomies, which both blocked very easily, so my diet was restricted. The first one retracted (which was why I had to have the second one created), and the second one prolapsed (though this was a minor problem). I recently got a third stoma (because my bowel perforated, not because of anything wrong with the stoma itsself), and this time I have a permanent, end ileostomy. I've yet to test it out with different foods, as I'm waiting the advised six to eight weeks to do so, and it's only four weeks since my surgery now, but I'm hoping the surgeon and stoma nurses are right and this one won't be so prone to blockages.

So this is just another factor you might want to consider, though really you'll probably have to rely quite heavily on your surgeon to advise you, as there are many factors specific to you and your disease. But you can have the colon removed and still have the stoma be temporary, if the rectum is ok.

Personally, I'm not hopeful about a miracle cure. But I'm definitely happier with a stoma, and wouldn't want to go back to how things were before.
 
Last edited:
Thanks #UnXmas. I've only just spoken with my consultant about the above, how's that for irony. Answers seem to come much quicker as an inpatient! Due to the fact that i have peri-anal disease he feels it would be sensible to go for an end ileostomy with a view to having a stump in the rectum left in situ till a later date, to remain if not bothersome but can be removed later if necessary. He felt to remove the rectum would be far too much to do all in one go. My consultant has been exceptional to date, with clear and concise explanations. I feel the offer on the table is a fair but realistic surgery, that will undoubtedly offer me and my family a better quality of life in the long run. I appreciate the information and support given. Glad to see you have come out of the other side in a positive frame of mind.
 
Hi (I'm not sure whether you are the Tracy or the Kevin part :p)

I had a total proctocolectomy, with a bit of the small intestine, all the colon, rectum and anus removed at the same time because it was so damaged by many years of Crohn's. (I had already had a number of resections.) My ileostomy healed quickly but they removed so much around the rectum that it took a while to heal. I didn't have any infection; it was just that my surgeon wanted it to heal from the inside out.

That was 14 years ago and I have to agree with the others that it radically my life. I can do all sorts of things that I couldn't do previously, like going snorkelling in the Galapagos Islands!
 
Hi Susan

Thankyou for your very supportive message. I am very definately the Tracy part of our member ID! Laughs

It seems you are a success story in the making with your stoma and surgery, I hope I'll be looking back in 14 years with such a positive outcome. I am sat in anticipation of the Surgeon coming to advise whether it with be done via keyhole or open surgery. I've previously had a colostomy and reversal so have already been told by one surgeon that there may be adhesions, making keyhole more complicated. It would be great however to at least try as the recovery period is much quicker and won't have the usual incision line down my middle. It has been confirmed again that they will leave a small amount of bowel and the rectum in place, I hope this doesn't prove to be a problem in the future. Looks like the surgery will take place before the end of the month as it is marked as urgent. I haven't eaten solid food for nearly 6 months as was on Fresubin energy drinks then onto NG feed for four and a half months. When the NG failed and was vomiting so much along with chronic diarohea, I was admitted due to malnutrition. I've been in hospital for nearly seven weeks and am still here. Although apprehensive of the surgery, I am also very keen to get on with it and get my life (and my family) back on track.
 
tracyandkevinp said:
Hi Susan

Thankyou for your very supportive message. I am very definately the Tracy part of our member ID! Laughs

It seems you are a success story in the making with your stoma and surgery, I hope I'll be looking back in 14 years with such a positive outcome. I am sat in anticipation of the Surgeon coming to advise whether it with be done via keyhole or open surgery. I've previously had a colostomy and reversal so have already been told by one surgeon that there may be adhesions, making keyhole more complicated. It would be great however to at least try as the recovery period is much quicker and won't have the usual incision line down my middle. It has been confirmed again that they will leave a small amount of bowel and the rectum in place, I hope this doesn't prove to be a problem in the future. Looks like the surgery will take place before the end of the month as it is marked as urgent. I haven't eaten solid food for nearly 6 months as was on Fresubin energy drinks then onto NG feed for four and a half months. When the NG failed and was vomiting so much along with chronic diarohea, I was admitted due to malnutrition. I've been in hospital for nearly seven weeks and am still here. Although apprehensive of the surgery, I am also very keen to get on with it and get my life (and my family) back on track.
Click to expand...

Dear Tracy,

New guy here, Hi. I've been browsing for a long time but never participated because I had nothing to add to the great community here, but my situation might give you a bit of insight. I was diagnosed at age 17 with very aggressive Crohn's and spent the next three years in and out of hospital, celebrating my 18th, 19th, and 20th birthdays on a hospital bed. And all because I refused surgery. I went from a 200 pounds linebacker (American Football) to a 108 pounds nothing. I will spare you details of what I was going through, you know all of it by now. After 3 years, I agreed to the surgery, not for myself, but for my family. I had my anus, colon, and part of my small intestine removed, so I am now the proud owner of permanent ileostomy.

That was the usual part. Now, here is the sad part: my younger brother was diagnosed when he was 18, and refused surgery for 2 years. He was in and out of hospital, etc. He's been through all the medications:, some seemed to work for a while, then not. That went on for nearly 5 years, than he finally agreed to a pouch. He was ok for a while, than it clogged up. Then came more medications, more hospital, etc. He even became addicted to morphine, and is still trying to overcome it. After 12 years, his life is still ruled by the illness because he won't accept a stoma.

So, I will end with a small pearl of wisdom: surgery is not the end, it's a beginning. I went through three years of hell because I wanted to remain "whole"... don't. It's now been 21 years, I still have to take medication now and then, when it flares up, but it's ok. I work, go to the gym, enjoy the nightlife of my wonderful city, and the best part is that only my family and the people I have told know of my surgery, no one else. So please, don't worry about that. I now have a "mostly normal" life, you will too.

Best of luck my dear,
PPR
 
Hi New Guy

What an inspirational and encouraging first message, I feel humbled you wouldtake such a lot of time to write your story for me and others for support.

As the days melt away (only ten now till the surgery), I have been temporarily discharged from hospital to regain some body mass and muscle tone in readiness for the op. I have lost approximately 3 stones in weight (approx 42lb) whilst laid in bed connected to pumps, etc., being supported on TPN and pain relief in hospital. With supplements as my only form of nutrician now at home, unable to tolerate solid foods of any kind, the pain is substantial around the clock as am allergic to morphine based meds (other suitable alternatives require inpatient care). I have Butrans patches in place and have to take tramadol around the clock but am still struggling. The reality of it all is I have two young beautiful girls who need their mummy back on track, and I need to be a wife, feeling human again. From all the incredible life stories I ha e read on this forum, I feel like the pro's far outweigh the cons. I cannot see a future with the way things are at the moment and the surgeons/GI docs are indicating I am likely to remain on constant TPN or worse wake up on the operating table unwillingly with a stoma - or worse if i dont go ahead with the surgery electivly. I now know I have got my head around the process and have wonderful family, friends and forum friends support - how could I ask for more.

I want to congratulate your strength New Guy for getting to your 21st stoma year, that's awesome.
 
I will tell you a little of my story I was told several times by my Gastrointestinal dr and a local surgeon I needed surgery I have crohns colitis and had to very narrowing strictures that was so bad I couldn't even have a complete colonoscopy fast forward ive had 2 years of major weight loss Mal nutrition serious blood loss Abscess's and fistula's now I was pooping out my side from a fistula that came from my colon the the surface that was nasty!!! I am a little over 3 weeks post op and every day that goes by I feel stronger better I feal like a completely different person it was a very hard surgery for me I was extremely under weight and pretty sick I had an NG tube already started to for a total of 6 days and I was In the hospital for 10 days I had a little problem with my bowels waking up but everyone is different
Ive started to slowley put some weight on I even went to the mall today it was awesome don't even have to look for a bathroom. If I was asked to do this again I would with out hesitation my life is so much better since surgery I have absolutely no regrets.
 
Actually, not looking for the bathroom was the first thing I told my therapist about 8). I spent years hiding because I was afraid of "losing it" in public, but not anymore. Yes, I'm still careful: I watch my diet; I don't eat in public, except with my close friends; I don't drink and I don't smoke (of course)...
I've been on fishing trips for 4 days in the woods, and yes, my doctor was very pissed about that, but I grew up sport fishing, and I wasn't about to stop.

So yes, a "normal" life isn't that hard. Unless your a MAN U fan, then forget it.

Cheers,
PRR
 
Okay, so there's one very observant "sport fisher" who thinks I may be a "Man U" fan just cos everyone else in the UK are, laughs! Wrong, I support Middlesbrough (don't tell anyone though, my street cred will be shot to pieces!).

The very thought of not having to sit for hours with horrendous loose BM's on the porcelain throne or rocking on our bottom stair in pain due to chronic constipation (I fluctuate between the two whilst in flare mode) sounds like bliss in itself. My husband recently commented whilst buying our new car that maybe we ought to leave the plastic covers over the seats 'just in case'! He has a brilliant sense of humour but I promptly went into PMT mode after that gag!
 
Can I ask a direct question of you lovely people (even 'sport fisher' Man U lover, laughs), I was wondering how many times a day on average you have to empty your ostomy bag? Only, I would rather be prepared if im gonna need to get Dyno Rod in frequently.
 
My ostomy is new only 3 weeks old my output is a little thick for some reason I have an ileostomy. I have to empty about 5 times a day that includes middle of the night as well. I don't usually let mine get half full because I'm small and it weighs my pouch down. It's the fastest bathroom trip ever.
 
Last edited:
tracyandkevinp said:
Can I ask a diremct question of you lovely people (even 'sport fisher' Man U lover, laughs), I was wondering how many times a day on average you have to empty your ostomy bag? Only, I would rather be prepared if I'm gonna need to get Dyno Rod in frequently.
Click to expand...

"Sport fisherman" here, and yes, I'm insulted. (YOU'LL NEVER WALK ALONE !) On a more serious note: I empty my bag 3 times a day; after lunch; after diner; before bed. Honestly, most people go to the bathroom more than I do.

Stay strong,
PPR
 
tracyandkevinp said:
Can I ask a direct question of you lovely people (even 'sport fisher' Man U lover, laughs), I was wondering how many times a day on average you have to empty your ostomy bag? Only, I would rather be prepared if im gonna need to get Dyno Rod in frequently.
Click to expand...

I only empty my ileostomy bag about twice a day, almost always in the evening only, or first thing in the morning if a little has come out overnight. And I never have to rush to empty it, nothing like how my life was tied to the bathroom before I had a stoma. It's so easy now!
 
I would usually empty mine 5 or 6 times a day - once during night, a couple of times in the morning, afternoon, evening and before I go to bed - it sometimes depends on what I have been eating.
 
Jeepers, all you guys have got it easy with a stoma, my loo seat doesn't get time to cool down before my butt cheeks reheat it again. Can't wait to be an ostomist now with all the positives! <3
 
tracyandkevinp said:
Jeepers, all you guys have got it easy with a stoma, my loo seat doesn't get time to cool down before my butt cheeks reheat it again. Can't wait to be an ostomist now with all the positives! <3
Click to expand...

It really made such a difference to me. My average bathroom trip now is about 2 minutes - takes about the same time to empty the bag as it does to go for a wee (but the bag never needs emptying urgently - I get plenty of warning). Changing the bag, I take my time and clean it all well and it takes about ten minutes.

Occasionally I get a leak, and then I do have to rush to the bathroom, but this doesn't happen too often, maybe once every couple of months or so, and there's usually a particular reason, e.g. when I started getting leaks one time, it was because my stoma had retracted and the bags weren't fitting; as soon as the stoma nurse advised me to start using convex bags, no more leaks. There's also the odd time when you take the bag off to change it, and the stoma decides to spurt everywhere while you've no bag on :yrolleyes: . Mine is quite predictable, so I don't get this too often, but the best way to manage it is if you think it's active and want to change it, sit in the bath and do it. Then the mess is contained. :) But I'd still take leaks and bag changes over my old bowel problems any day!
 
I was going to say that I hadn't had a serious leak for ages but I don't want to draw the attention of the Avenging Angel of Smugness. :ack::ybiggrin:

I sometimes don't pay attention to my stoma starting to itch, which is a sign that I should change my bag - then I might get an oozing leak.
 
:lol: I couldn't feel smug because I just had a leak this morning. Luckily the kind where I noticed the smell before anything made it outside the bag. I'd just changed the bag this morning, and it turned out I'd put on one of the bags from a previous generation of stoma - I've had three stomas in the past year, sizes have varied greatly, and I have loads of old bags lying around. I wouldn't have thought it would have made a difference, as it was cut to a similar size, and I don't need a convex with my new stoma. The only difference was that the bag I put on was not as wide as the ones I've been using for my current stoma. Maybe it was just a freak coincidence? I thought it would be handy if I could use up some of my old bags, but now I'm nervous!
 
Yes, the upward wafting of a malodour needs to be taken notice of - disregard at your peril!

I had a box of one-piece bags where the bag itself came away from the base plate for about 1-2cms - not all of them, but I became so nervous about using them that I threw the rest away.
 
Well I promptly had another leak, despite using the bags that have been working just fine with my new stoma so far. Again I managed to catch it before it got out of the bag. I've had awful watery output today, which I don't usually - I don't usually get much output at all until the evening - but I was on an unintentional cold-turkey detox from codeine because my prescription had run out, so I'm thinking that was the cause of the diarrhoea. I've now had my codeine, and no more output. I would have hoped the bag would cope even with a high volume of watery output, I might have to ask the stoma nurse about this one, they usually have a solution. I want to be able to have confidence it will hold even if I've got an upset stomach. I've got some mouldable rings that are supposed to eliminate any small gaps between stoma/skin and the bag - maybe they'd be enough if it was just that the water was somehow seeping through where the thicker output couldn't get through?
 
I'm trying convex bags again, which did the trick with my previous stomas when they started leaking. My stoma has shrunk massively - there was no hope of getting my old convex ones to fit it a few weeks ago, now it's fine.
 
The convex shows no sign of leaking at all. Using convex bags was what fixed my leaking problems last time, so perhaps that's just what I need. I'm still not quite clear on what a convex bag does that an ordinary one doesn't though.

In other stoma news, I am now over six weeks with my new stoma, and have successfully eaten a pear with skin on and a very small portion of courgette with skin on (on two seperate days) and have had no pain or other signs of blockage. I'm going to try a bit of apple shortly too.
 
Convex bag are a good brand. With my job I deal with ostomates all day long and it seems that most of them use Convex or Hollister brand. If you ever want any suggestions on new items shoot me a private message and ill see what I can do and find stuff. The best part of my job is that I get to help other ostomates and is so cool. I have told all my patients about this forum and I hope that others join. Its awesome you can eat a pear and a courgette. Good luck in the adventure of the apple and all that my may follow after it. Good luck and keep us posted.
 
2thFairy said:
I think you mean Convatec is a good brand. UnXmas is tslking about convex bags, which is the shape of the baseplate.

I don't do well with Convatec or Hollister. Many people don't do well with Hollister.
Click to expand...

Yes, convex is just the style, not the brand. It seems to be what I need. It seems like they give extra support, and I think my abdomen is lacking in natural supportive structures. The brand I use is Coloplast - just because they were the ones the stoma nurses gave me first, and I've never had a problem with them so never changed.
 
SickNimmons said:
Any tip or different was to make your stoma not so loud. I feel like mine is making a lot of noise??
Click to expand...

Mine is pretty quiet, but the times when it's noisy are times when my digestion is particularly messed up, e.g. after surgery, when I had very watery output as a result of going suddenly without codeine (diarrhoea was a withdrawal symptom), etc. So anything that calms down your system may help - e.g. avoiding foods which disagree with you. Perhaps you could also try loperamide or another anti-diarrhoea med, as for me at least watery output seems more likely to be accompanied by noise. Or do you get noises with fairly solid output? Also maybe try anti-spasmodic meds like Buscupan, as perhaps it's extra air bubbling around that causes noises? If so, reducing gas may help.
 
cleuger said:
Oh yummy ur able to apple that's awesome I haven't tried apple yet.
Click to expand...

Yep, it went ok, and I'm hoping that the surgeon and stoma nurses are correct and this stoma won't block so easily.

At lunch today my family are going to have stuffed peppers, but I believe peppers are particularly difficult, that the skins especially don't break down (as with leeks, onions, etc.), so I'm thinking I'll have just one little bite - I mean literally one little bite. :)
 
It's wonderful to eat normal I'm happy for you. I've tried everything but hard fruits like apples I haven't tried grapes yet either but I want apples it's fall and close to halloween and I really want a Carmel apple lol did u have crohns before or was it colitis before ur surgery? I'm going to try a little apple today see how it goes I get so much inspiration from you guys I'd be lost without this forum.
 
I have watery output again today (who knows why) and I'm pleased that my convex bag is holding.

Try a small bite of apple with no skin if you do try apple, cleuger, but I'd wait longer, but then I'm very cautious. I'd stick to apple sauce!
 
Scrap all my hopes about eating fibre and remaining blockage-free: I had the familiar stomach pain yesterday. So much for my attempt to eat an apple and pear. :( I know it well enough to recognise the symptoms now, and I think my new stoma is going to block just like the previous two. Oh, well - back to eating bananas and avocados!
 
Sorry to hear that. Did you eat them together? I like apples but they go through undigested. My system needs to clear before I have more. If I don't everything slows right down and I get bloated and feel lousy.
 
DJW said:
Sorry to hear that. Did you eat them together? I like apples but they go through undigested. My system needs to clear before I have more. If I don't everything slows right down and I get bloated and feel lousy.
Click to expand...

No, I ate one then the other two days later.
 
I've been worrying a bit over this today. I'm confident the cramps were from eating the fruit. The blockage cleared itself after eating lunch yesterday - eating gets things moving, and I had a whole bag of water plus bits which I presume were the fruit. (And after it cleared my weight was down 0.6kg afterwards from the day before, so I think I had a fair bit backed up!).

The cramps stopped after that but the area around and just above my stoma feels really sore, especially if I press it, and I think this is a separate issue from the blockage. Last time I had pain on the stoma site, I was convinced it was just a regular blockage from eating fibre, and then it turned out my intestine was blocked and ended up perforating. My other worry is that my incision is still not completely healed from surgery about eight weeks ago, and the sore point is close to that. There's a hard bump like a marble visible under my skin next to the incision and that's where it feels sore.
 
hey everyone, I have my second temporary ileostomy because of a fistula and active disease in the rectum I had a total colectomy in 2011 with a J pouch when they thought I had ulcerative colitis it has since been proven that in fact I have Crohn's disease and now I've had to have another hopefully temporary ileostomy put on but I'm being plagued by an abscess the first time I had one was a couple weeks after the ostomy was put on they did a JP drain and put me on antibiotics and it went away however they took the drain out two weeks later when I still had quite a bit of infected looking fluid coming out, and then 10 days after they took the drain out I was back in the hospital with another abscess this time they said it was too small to put a drain in but they gave me IV antibiotics and then sent me home with more antibiotics. It went away again and then 5 days after I stopped my antibiotic course it came back it's now back for the third time I've been on antibiotics for 2 days and it's getting worse pretty quickly, it hurts, if I can bear to press it hard enough I can express pus that comes out underneath my stoma has anyone had any experience with this?
 
Ok...decisions to be made. So I have been putting off surgery...strictures, Crohn's...need everything out...including rectum. I have put it off because I have been feeling Ok but now I don't feel well...just really want to have my life back. I think i have the guts now to do it...HA! Anyhow, here is the quandary...my estranged inlaws have a family trip planned for end of June to a Carribean island. Super fancy and all expenses paid. They really wanted us to go. I talked my husband into agreeing to go because I felt OK at the time and I thought we could try to mend fences. We talk to the parents now but we haven't seen siblings in years...they all get together but I married the black sheep...long story...they really hate me because I stuck up for him...yadayada...but I also didn't want my kids to miss out on an amazing trip and to spend time with their only living grandparents. I had hoped to wait until after the trip to have surgery...now I just don't know if I should. I worry I will end up being treated in an emergency room by some voodoo doctor. I also don't want to be new with appliance and embarrass myself. I didn't want them to know about the bag. They whisper about me on a good day...but will I be recovered enough to make a trip like this? I don't have to do the water sports but...barring any complications...will I be OK changing appliance...know what I can eat...know how to clear any blockage? Do you think a doctor on a small island will be able to even help me if I have an issue? Is it really common? Will I still be leaking from my butt (I've heard that happens) and how do you deal with that in a bathing suit? How long does all of this take to be comfortable with? What if food gets stuck or appliance won't stay on? I have teenagers and they are really good kids...and my husband is very supportive...but I just don't know...if I am going to do it before the trip then I need to do it soon. I also am worried I will be embarrassed at customs...or if something leaks and we are all in a taxi together going somewhere..do they make some sort of rubber pants for under clothing? Can I even drink a stiff drink by then? Oh please tell me I can!!! Thanks for the help. Hope I am posting in right spot. Maybe this should be under surgery? Any suggestions would be appreciated. Sorry to ramble...
 
Hi Spingirl,

I find 3 months post surgery is my personal back to normal mark. I'm not running marathons or anything like that intense. My stoma is pretty much back to normal. Pain is completely gone.

If everything down below is removed and stitched closed you won't leak. If not, you will. I needed to uses sanitary napkins to adsorb it. If you're really leaking one day you can use a tampon.

I find salt water peels my appliance off.

I'd have a stiff drink and see how it goes.

Hope that helps.
 
Perhaps you can find out more about what medical care will be available on the island you're going to? Or can you get travel insurance that may allow you to get the best care available there? It sounds like you're not sure what the healthcare system is like, and knowing that should make it easier for you to decide if you want to go or not, as it's a major factor in your decision. And if the trip is long you'll need to know whether you can get stoma appliances there or plan how much you need to take with you.

And when would you be having the surgery if you do it before? Your trip is at the end of June, and would you be having the surgery now?

Also remember you may need emergency medical care even if you don't have stoma surgery before you go.
 
Last edited:
If everything down below is removed and stitched closed you won't leak. If not, you will. I needed to uses sanitary napkins to adsorb it. If you're really leaking one day you can use a tampon.
Click to expand...

Not true. I went a year with a stoma before I had further surgery to remove/stitch up everything, and did not leak at all for that year.

Don't assume that what one person experiences must apply to everyone.
 
UnXmas said:
Not true. I went a year with a stoma before I had further surgery to remove/stitch up everything, and did not leak at all for that year.

Don't assume that what one person experiences must apply to everyone.
Click to expand...

Are you sure your not the exception to the rule? Its perfectly normal to have leakage. There are always going to be exceptions to the rule and most people understand that. But generally speaking you can expect leakage. All the time, no. From day one, not necessarily.
 
DJW said:
Hi Spingirl,

I find 3 months post surgery is my personal back to normal mark. I'm not running marathons or anything like that intense. My stoma is pretty much back to normal. Pain is completely gone.

If everything down below is removed and stitched closed you won't leak. If not, you will.
Click to expand...

I don't have my rectum removed and I don't leak at all. I have mucous, but only when I go to the bathroom anyway. I'm sure it's not the same for everyone, and I'm wondering if I'm taking this quote the right way. If I misunderstood, I apologize!

Oh, and I wanted to agree with the three month assessment...it took me about that long to feel "normal" after my stoma surgery.
 
:sorry:

I withdraw my statement and will rephrase it. Your intestine will shed some mucus. Perfectly normal.
You get rid of it when you go to the washroom. If it is bad, have fissures or a fistulas you may leak. Their are work around for that.

:beerchug:
 
spingirl - another thing to consider is how easily and quickly you would be able to get home, or to a place with a good healthcare system (if you find your worries about the healthcare where you're going are not adequate) if you needed to? (Though again I don't know if you have travel insurance where you're from or how that would come into play.)

Also check whether the stoma nurses you will have will contact you by phone if needed.

To answer some of your specific questions:

It took me only a matter of days to get the hang of emptying and changing my bag (they probably won't let you leave hospital until you've shown the stoma nurses that you can).

After a few weeks I had figured out what works best for me regarding my individual preferences for managing my stoma, the things that are different for everyone and you just figure out as you go along: getting into a routine, how often you need to change and empty your bag, what type of bag you want, what you carry around with you when out in case you need to change while away from home, etc.

It took me a few weeks to understand how to order new bags and other items, though the company my stoma nurses use does seem to go out of its way to make it complicated. :yrolleyes:

It took me a few months to recover physically from my original stoma surgery, but I had complications.

Are you having an ileostomy? If so you will probably be advised to avoid some foods for the first six to eight weeks following the surgery.

As I mentioned above, I don't pass mucus or anything else via the rectum, and that was true even when it was still connected. However, I have had my stoma bag leak several times. At one point I was getting leaks quite frequently, and this turned out to be because of a specific problem, and when I told my stoma nurses, they knew what to do and switched me to a different type of bag and the leaks stopped. But with regards to your trip and the timing of it, it's worth noting that this problem did not occur soon after surgery, it developed later on. I also have the occasional leak for unknown reasons, maybe I didn't put the bag on properly or something like that. This doesn't happen to me often; maybe once every couple of months or so, but again, a leak is something you can have happen no matter how long you've had a stoma for (though they do tend to be more frequent in the first few weeks following surgery).

I believe there are special swimming costumes made for people with stomas. I've never investigated them myself but if you google them you should find them.

Drinking alcohol - I can't tell you my experiences with this as I don't drink; however, I know that having a stoma generally doesn't mean you can't drink. You'd need to check that any medications you may be taking are ok with alcohol. With an ileostomy, you'd need to be careful about dehydration. In general, of course it's probably wise not to have much alcohol, and avoid it completely in the weeks following surgery. If you do want to drink when on your trip, I would test your reaction to alcohol at home first, a very small amount only to see how your digestive system handles it then gradually increase. Then when away, limit alcohol to the amount you tried at home. But even if your digestive system does seem ok, still drink only in moderation.

I hope at least some of this is helpful to you, and I agree with the others on the three month time frame for adapting to a stoma.
 
Last edited:
DJW said:
:sorry:

I withdraw my statement and will rephrase it. Your intestine will shed some mucus. Perfectly normal.
You get rid of it when you go to the washroom. If it is bad, have fissures or a fistulas you may leak. Their are work around for that.

:beerchug:
Click to expand...

This isn't correct either. In addition to not leaking, I don't pass any mucus when going to the bathroom, or at any other time. This was true when my rectum was still connected: no mucus, ever.

Why do you think everyone with a rectum passes mucus? My stoma nurses and surgeon have always told me that some do and some don't.

It was a subject we discussed at length prior to me getting an ileostomy. I had extreme rectal problems, rectal problems were one of the main reasons I got a stoma. I'd read that with some stomas people regularly pass mucus, blood or even stool from the rectum, and was very worried that if that happened to me, I'd still be dealing with all the rectal symptoms with a stoma. My stoma nurses and surgeon were very clear that some people with stomas and a connected rectum pass nothing via the rectum, some pass some several times a day, and both these and anything in between is normal. My surgeon wanted me to have a temporary stoma at first, so left the rectum connected, not stiched up. I was glad to find that I was one of the people who passed nothing (except in the first two or three days after the surgery when I passed some blood and gunk when I went to the bathroom).

Then I carried on with stoma and rectum, passing nothing via the rectum, until complications occurred which led to further surgery. I now have an end ileostomy, and I actually do still have a recum. It's no longer connected to the rest of my digestive system, but it's still there. (I know in my earlier post I said I had surgery to "remove/stitch up everything", but I was using that as shorthand because describing all that my further surgery did would take a while; my main point was that for my first year with a stoma my rectum was definitely un-stitched, connected and basically in full working order.) My other surgeon, who created the end ileostomy in emergency surgery after my intestine perforated, said my rectum has shrunk from lack of use, and that this is very normal when you have a stoma and a rectum; she said this is why a lot of people with a rectum and stoma don't produce mucus, the rectum stops producing it.
 
Last edited:
I have a loop ileo and only a rectal stump. I pass mucus every time I urinate, but especially after I eat. Your entire digestive tract produces mucus, not just the rectum. I have a very wet ileostomy. You can truly watch it drip mucus when it is resting. I've had mine for 3 years. My rectum has shrunk, but the amount of mucus I pass is the same. There doesn't seem to be a good explanation as to why we all experience different things on this subject. Maybe overall health, maybe diet, maybe I'm a freak. It just is what it is.
 
2thFairy said:
I have a loop ileo and only a rectal stump. I pass mucus every time I urinate, but especially after I eat. Your entire digestive tract produces mucus, not just the rectum. I have a very wet ileostomy. You can truly watch it drip mucus when it is resting. I've had mine for 3 years. My rectum has shrunk, but the amount of mucus I pass is the same. There doesn't seem to be a good explanation as to why we all experience different things on this subject. Maybe overall health, maybe diet, maybe I'm a freak. It just is what it is.
Click to expand...

It's no wonder it's impossible to figure out what is "normal". :confused2:
 
That's another thing I haven't noticed much of: mucus from my stoma. I notice a bit of stringy white mucus on the stoma when I clean it but only very occasionally, and I don't recall ever seeing any coming out of it. Blood sometimes. And the one I get fairly frequently and can find no explanation for: froth! Output that's full of bubbles, like beer head.

But my stoma nurses and surgeons thought it "normal" that I never pass mucus from the rectum or leak mucus from the rectum, so I can't be an exception from the rule on this.
 
Thank you for all the advice. I think I may have started this on a thread instead of starting a new post. Sorry. I was on Ipad and it was late...didn't realize.

The trip is only for for 5 days. I am going to Turks and Caicos. From what I've read I would need to have med flight to Miami and that is about 90 minutes away. I will look into that travel insurance. I wonder if they make you fill out a medical form. I might not qualify? Thanks again for all of the info.
 
UnXmas, I was told it was perfectly normal to pass mucas.
As far as I'm concerned we can go back and forth til the cows come home and be no farther ahead.
It's a pointless splitting of hairs that only drstracts from the thread.
 
DJW said:
UnXmas, I was told it was perfectly normal to pass mucas.
As far as I'm concerned we can go back and forth til the cows come home and be no farther ahead.
It's a pointless splitting of hairs that only drstracts from the thread.
Click to expand...

It is normal to pass mucus. It's also normal to never pass mucus. So why tell people that they definitely will when they might not?

It's important on threads like this one: http://www.crohnsforum.com/showthread.php?t=69551

When you start telling people their symptoms are definitely normal when you don't have your facts right on the topic.

For a lot of people, leaking and/or passing mucus is a big deal. When you responded about it on this thread, you were talking to someone who is concerned about it. I said in my previous post that this was a major factor when deciding to have an ileostomy. So making false statements about it - even more so from a moderator - matters, even if you don't care about it.

If it's just splitting hairs, then you would think it fine to reverse your statements:

If everything down below is removed and stitched closed you won't leak. If not, you will.
Click to expand...

If everything down below is removed and stitched closed, you won't leak. If not, you still won't leak.

Your intestine will shed some mucus. Perfectly normal.
You get rid of it when you go to the washroom.
Click to expand...

Your intestine will not shed much mucus. Perfectly normal. You won't ever need to get rid of it when you go to the washroom.

But actually it changes the meaning of your statements significantly.

If you used words and phrases like "probably", "might", "some people", "most people", etc. you wouldn't be giving false information and you could avoid misleading people.
 
Last edited:
Hi all, I found out last Thursday I'm to have a colostomy. I don't have Crohns, I have Ischemic colitis and, last July I collapsed and was rushed to hospital. Part of my bowel had died and developed gangrene and had to be removed. They removed all my ascending colon and over 2 meters of small bowel and all that was in between. This resulted in incontinent diarrhoea which has caused me to be housebound for nearly a year. I have to pad myself up to get to hospital appointments. No socialising has brought on depression and, as all the usual meds have not worked hopefully a colostomy will give me my life back. I had my gall bladder out a few years ago which resulted in bile acid diarrhoea but I was able to manage it quite well with Loperamide, but the way I am now, well, I feel I'm from a different planet!

Although I agreed to the colostomy I'm really scared of the op. I've had so many for hernias etc. and have a lot of scar tissue, but more so of the anaesthetic.

This is my first post on this forum and I hope I have done it right!
 
Hi and welcome.

Sorry you're going through this. Your feeling are to be expected.
I've had many surgeries with no anesthetic problem.
Sending you my support.
 
Hi Beshlie and welcome.
It's pefectly normal to feel apprehensive , but hopefully this will be the gateway to you regaining your ability to have a better life.
I had my whole large intestine removed at Christmas, and I wish I'd had it done years ago.
It's completly changed my life for the better.
Hope it does the same for you :).
 
Hi Beshlie, I used to suffer from incontinence, among other things, until I got a stoma a few years ago. I love having a stoma and wish I had got one earlier. Even on the rare occasion my stoma leaks (maybe once every few months or so, usually if I've not put the bag on right) it is so much easier to deal with than bowel incontinence, and you get far more warning with a stoma leak, or at least that's what I've found. I don't even have to worry about wind now, which I did find so embarrassing before. :redface: My rectum is no longer attached to the rest of my digestive system, so it's physically impossible to pass wind; no sound, no smell. :)

The fact that you've had some anaesthetics before means it is unlikely you'll have major problems with this one.

Btw is that your dog in your picture? He/she is lovely. :)
 
Thank you for your support everyone. It's a subject you can't talk about to many people! Even my GP doesn't seem to 'get it' that I just want my life back.

I do worry about anaesthesia even though I've had it many times before.

Yes, that is one of my dogs, her name is Purdey and she's a gun dog. I also have two Cavalier King Charles spaniels, Leo and Muffin, and it will be nice to go out with them again.

The emergency surgery I had last year was such a shock. Soon after leaving hospital my hair fell out and it's just growing back now, though I understand that it may happen again with major surgery?

So much flits through your mind when you're worried!
 
Major surgery in and of itself shouldn't have any bearing on hair loss. What caused it before? Nutrition may be a factor.
 
My hair fell out, I don't know the reason why, but I've no reason to suspect surgery caused it. It didn't all fall out, but enough did to make it very noticable, especially as I had hair down to my waist before. Now it is thin and just about reaches my shoulders, and there are bald patches. I have great fun buying head scarves. :) It honestly doesn't bother me much, though I am very aware of how distressing it is for many women.

But I'd had surgeries before my hair loss, and my hair didn't start falling out after a surgery, and subsequent surgeries haven't made it worse.

I can't tell you the cause of your hair loss - I don't even know the cause of my own - but I don't think you need to worry about another surgery. At least there's no way a surgery can directly cause hair loss, I've heard about psychological stress causing it, but I think that's largely a myth(?). Did you have any medications that could have caused it?
 
Well, I lost my hair before after having my son and again after a very stressful time, so perhaps that's the way I respond to certain stresses, guess I'll never know. I too have had fun with scarves and also borrowed some ideas from Hijab. I have some wigs but find them too warm. My hair is growing back darker and curlier:).

I have started to have booklets on Colostomies, what to expect etc., and diet etc. but of course nothing beats talking to people who have been there. And also I've been sent some samples of bags, I thought they would be bigger than they are, but they're quite neat. As I've been prone to hernias in the past (was born with one) I was wondering if some kind of gentle support would be a good idea?

My emotions are mixed at the moment, on the one hand I want to lead a normal life and on the other I'm nervous of the surgery!

I'm hoping for a better experience in hospital this time too. Last year because of all the vomiting and D they put me in a room on my own, which normally would be fine. But they also locked my usual meds away and I went into withdrawals from 2 of them which caused me to hallucinate. I asked about them but got no response. Then because of asthma I asked for a nebuliser with salbutamol only to discover they were just giving me steam though the nebuliser, yet all these drugs I had taken in with me so there was no need for me to get in the state I did. I don't get that. Plus, the TV did'nt work!! Sorry to moan!
 
That's strange - my hair has grown back quite curly too, and it was perfectly straight before. I wonder if that's usually what happens when hair grows back.

You can get different sizes of bag depending on your need. I'm only familiar with ileostomies, but I believe colostomies have a much lower output so you shouldn't need a big bag. Hernias are again not something I've had myself but stomas can be associated with hernias so that's definitely something to ask your stoma nurses about.

Bring a copy of your repeat prescription list with you, which has the doses and timings of your medications on, so you can show the nurses exactly what you're supposed to have annd when you're supposed to have it. Hospital is always horrible but I'm finding that the more time I spend there, the more small things I find to make it more bearable.

I found it difficult to understand how stoma bags work when I tried reading about them prior to my surgery. But as soon as I had one and could apply what I'd read to a real situation, I picked it up very easily. Your stoma nurses will make sure you know everything you need to before you go home.
 
Has anyone had an ostomy due to perianal Crohn's, that is fistulizing Crohn's limited to the rectum and sigmoid colon? This may be the next step for me and I'd really like to know about your experience if you can share. Feel free to PM me if you prefer.
 
BlueSky said:
Has anyone had an ostomy due to perianal Crohn's, that is fistulizing Crohn's limited to the rectum and sigmoid colon? This may be the next step for me and I'd really like to know about your experience if you can share. Feel free to PM me if you prefer.
Click to expand...
I have a permanent ileostomy due to fistulizing Crohn's in the rectum and a good part of my colon (esp. the sigmoid colon).

I went into surgery in severe pain and a quality of life that was extremely poor and was out hiking a month later 😊 It's been a positive experience overall for me.
 
VeganOstomy said:
I have a permanent ileostomy due to fistulizing Crohn's in the rectum and a good part of my colon (esp. the sigmoid colon).

I went into surgery in severe pain and a quality of life that was extremely poor and was out hiking a month later 😊 It's been a positive experience overall for me.
Click to expand...

PS: Great website VO!
 
My hair is falling out and I have not had surgery yet. I am not liking it one bit! I am still OK as far as it being noticed by others but I can tell and I know where I am heading...I wonder if there is a thread for this subject already...I will have to look...
 
Are you on any medications that could cause hair loss, spingirl? Even if you're stressed about upcoming surgery, I don't think that stress would cause noticeable hair loss. When will you be having surgery?
 
I used to be on Aza and also cholesterol medication but have been off both for over a year. All I take is omperazole (priolsec) for gird and my high blood pressure pill (lisinipril). sorry - can't spell them right. I don't think its the meds anymore. I know the cholesterol one was terrible for hair loss but I didn't take it for more than a few weeks. I got really bad muscle pain from it. Didn't test positive for muscle issues but I could tell immediately. It was like an on/off switch as soon as I took any of the statins. I should take something but just don't really know what to do. Doctors don't take the muscle pain seriously (or hair loss) unless you are bad enough to have it show up on blood work. I am not one to drink a lot. I am hoping some of it is from dehydration. I am working on that. I want to try Biotin but not sure if it will give me stomach upset. I am going to ask next time I am at Dr. Again, my levels of B12 are just barely under normal so they don't think much of it but I feel like I can tell...I'm tired a lot. Not sure. I think I just need a whole new body!
 
spingirl said:
My hair is falling out and I have not had surgery yet. I am not liking it one bit! I am still OK as far as it being noticed by others but I can tell and I know where I am heading...I wonder if there is a thread for this subject already...I will have to look...
Click to expand...


The inability to absorb protein can cause significant hair loss. Low protein levels are very common in Crohn's disease. If a blood test shows a low albumin level might suggest this is the cause. In other words, the disease flaring may be causing the hair loss and the surgery may help in the long term.

I've also experienced hair loss 4-6 months after surgery. My hair dresser described it as "surgery shock." Your hair is very sensitive to health challenges and like the rings of a tree shows the shock a few months later. That's the theory anyway. My hair returned to its normal thickness in a couple of months. Even if you're worried now, you may be flipping or primping your locks after you recover. All the best!
 
So now for the big question - does it grow back eventually?

Can I eat more protein or should I drink those protein shakes to help in the meantime? I have not scheduled surgery yet...may not do it until next year...I have a hard time drinking them since they taste like chalk to me but if I know it will help my hair...then I might just have to get it down.
 
I'm starting B 12 injections soon too. I've had an ileostomy since 2013, but my B 12 only just got low, I think because I had more small intestine removed last September. Not much but it seems the most obvious reason. I've not noticed any new symptoms since my B 12 got low.

My hair loss has been pretty stable for a year and a half or so now. It's bad enough for me to wear headscarves, it's very thin and won't grow past shoulder length - it used to be thick and right down my back, and I never cut it so the decrease is dramatic! But it's stable now, not getting thicker but not getting any thinner either. I think the only med I've been taking consistently through that time (besides ones I really don't think could cause hair loss) is amitriptyline, or possibly my hormone medication. Or maybe it's nothing to do with meds at all.
My hair loss started before I had a stoma, and I'd had many previous surgeries and been underweight a very long time with no hair loss.

Definitely start a thread about it if you'd like to.
 
BlueSky said:
The inability to absorb protein can cause significant hair loss. Low protein levels are very common in Crohn's disease. If a blood test shows a low albumin level might suggest this is the cause. In other words, the disease flaring may be causing the hair loss and the surgery may help in the long term.

I've also experienced hair loss 4-6 months after surgery. My hair dresser described it as "surgery shock." Your hair is very sensitive to health challenges and like the rings of a tree shows the shock a few months later. That's the theory anyway. My hair returned to its normal thickness in a couple of months. Even if you're worried now, you may be flipping or primping your locks after you recover. All the best!
Click to expand...

Is the albumin test included in basic blood tests or is it one they have to specifically request?
 
Hi, I am new to the site, had my stoma for 16 weeks, but had 2 other ops inbetween, so now I have a slightly deformed one. The problem is my skin around the concaved part burns badly. Any suggestions on what I can use to help the proble. My name is Pat by the way and I live in beautiful South Africa.:ysmile:
 
patsypolo said:
Hi, I am new to the site, had my stoma for 16 weeks, but had 2 other ops inbetween, so now I have a slightly deformed one. The problem is my skin around the concaved part burns badly. Any suggestions on what I can use to help the proble. My name is Pat by the way and I live in beautiful South Africa.:ysmile:
Click to expand...

Are you using a convex or flat wafer? Do you use any paste or barrier rings?
 

Similar threads

Papantoine
Punching Crohn’s in the balls!
Replies
7
Views
734
RickS
R
M
Covid Journey-Spouse Experience
Replies
0
Views
840
MaggieLovesToCook
M
Papantoine
Neglect?
Replies
0
Views
286
Papantoine
Papantoine
thike1966
Hotel Crohn's Forever, The Return Of The Fistula
Replies
0
Views
615
thike1966
thike1966
Soryan
PARADIGM SHIFT NEEDED!!!
Replies
1
Views
1K
kiny
kiny

Latest posts

Back
Top