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Stoma Support Group

We are awesome. We are the colostas and ileostas. Celebrate your awesomeness by joining the Stoma Support Group. :dance:
 
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Nyx

Moderator
I didn't see a Subscribe button on this page, but found it under Thread Tools if anyone else can't see it either :)
 

Dukeis

Dynastic Overlord
Has anyone else here felt really good and had to have surgery? What I'm getting at is of all the times I have felt like total crap I never have had to have surgery. Now I'm feeling pretty damn good and I have to have this surgery. I know it has to be done because of the dysplasia, but it seems to make it harder by feeling so well.
 
That is actually the best case scenario for surgery, Dukeis. The better you feel going in, the faster you heal and the sooner you get to get on with the joys of stoma ownership.

It must be frustrating, though... I can see that!
 

Dukeis

Dynastic Overlord
That is actually the best case scenario for surgery, Dukeis. The better you feel going in, the faster you heal and the sooner you get to get on with the joys of stoma ownership.

It must be frustrating, though... I can see that!
There you go again I swear you are talking to my wife again.
 

Terriernut

Moderator
Has anyone else here felt really good and had to have surgery? What I'm getting at is of all the times I have felt like total crap I never have had to have surgery. Now I'm feeling pretty damn good and I have to have this surgery. I know it has to be done because of the dysplasia, but it seems to make it harder by feeling so well.
I'm going to second Toothy on that. The worse you are when you have surgery the longer the recovery time. Our Misty Eyed was feeling very good before surgery, and she recovered quicker. Me, took months to feel human again. It's a major op. So, although it IS harder to get your head around it to have surgery when you feel good, it is better for your body to have it at this time.

We're all rooting for you my Overlord!
 

Dukeis

Dynastic Overlord
Another things that seems to be making me feel better ( I know this would be short lived) is they have stooped the Humira for surgery. I realize that stuff makes the Crohn's better, but I think it must also zaps the energy out of me. For the last couple of weeks I feel as I have so much more energy. Thinking about it they have stopped the Itraconizole also. It one of those, but I have to take both together so who knows.
 

annawato

Moderator
Staff member
It could be worth starting just one of them post surgery to see which one causes you to feel lousy. When are you having the surgery? Sorry my poor old brain has forgotten.
 

Dukeis

Dynastic Overlord
It could be worth starting just one of them post surgery to see which one causes you to feel lousy. When are you having the surgery? Sorry my poor old brain has forgotten.
That is a good idea. Surgery is scheduled 2 weeks from today March 20th.
 
I, too, was really bad when I had my proctocolectomy and it took me a long time to recover. I had left surgery far too late and had to have a very large amount of flesh removed around the recum and anus.

So get yourself as fit and healthy as you can before the op. It really pays off.
 

Dukeis

Dynastic Overlord
Going to see the surgeon & anesthesia today for all the preop stuff. This is getting more real in my head now.
 
You can do it!! You've got your own cheering section here. Go in there like you know what you're doing. Yeah, baby!!
 
Dukeis, I was in a very similar position. I was feeling really very well going into surgery 3weeks ago. I had a major complication post op and had to have a 2nd emergency op to revise the Stoma. I lost 18lbs in two weeks, mostly muscle, and I have felt very very sluggish since. It is going to take several months to get my muscle mass back and back to full strength.

What I'm trying to say here is I'm mighty glad I was relatively fit pre-surgery, and whilst I really hope you have a smooth procedure with no hiccups, you'll still need all the strength you have to recover.

I'm rooting for you and send my good vibes for 20th March, good luck!
 
For everyone who says they felt bad going into surgery and took longer to recover, I'd like to know what you mean by "bad." Are you talking about the Crohn's itself (a bad flare, etc.) or your overall condition (not physically fit)? I'm asking because I just learned I need to have my entire colon removed, but I also was told I have lost too much weight to undergo transplant surgery (I'm on the liver transplant list). I'm wondering how much of a problem my weight loss might be.

(I only just learned of the colon removal last night, and don't know when my doctor will call back. I will ask him all these questions and tons more, but I want to learn as much as I can in the meantime.)
 
For me it was a really really bad flare up that just wouldn't stop I lost over a stone and went down to just 5 stone. Going toilet 30-40 times a day, heart beating over 100 bpm all the time, looking like I was 9 months pregnant, flu like symptoms etc They tried everything to make it stop after 3 weeks nearly 4 weeks of severe treatment it wasn't working I was getting sicker and sicker. The op was too save my life and I'd only suffered for 4 months with problems. My large bowel could of burst at any time which would of killed me if they hasn't removed it when they did. I've been diagnosed with indeterminate colitis which means they don't know whether I have Crohns or colitis. It took me three months to recover from it and three and a half months for pain too go away. I'm due to get my rectum and anus removed in 7 weeks to make my ileostomy permanent can't take a chance of being joined up with my diagnosis. Scared of this next one coz all I have are bad memories of last one.
 
For everyone who says they felt bad going into surgery and took longer to recover, I'd like to know what you mean by "bad." Are you talking about the Crohn's itself (a bad flare, etc.) or your overall condition (not physically fit)? I'm asking because I just learned I need to have my entire colon removed, but I also was told I have lost too much weight to undergo transplant surgery (I'm on the liver transplant list). I'm wondering how much of a problem my weight loss might be.

(I only just learned of the colon removal last night, and don't know when my doctor will call back. I will ask him all these questions and tons more, but I want to learn as much as I can in the meantime.)
Not to comment too much on your situation since I know little of transplant surgery, but to share my experience about nutrition and weight loss prior of surgery. I once had a surgery postponed due to weight los and low nutrition. The surgeon thought I was too weak to do a good recovery. He strongly reconmended to postpone it by some weeks/month and durring that time I was on a special nutrition diet drinking special drinks 3 times a day to improve bodys nutrition. He would have operated as planned on my demand but who am I to go against his advise. My nutrition levels improved and a sucssesful operation was done in 2003.

I am sure if the doctor thinks a better nutrition level can be achived its wort a try since nutrition effects your healing inside and your scar too. But if the situation is bad and getting worce then what will it help to wait.

In 2006 my operation failed and I did not heal well inside the seams of my intestine did not hold and I had sepsis and a temporary stoma put in 2 days later. The most likely reason was that my body was in too bad of shape (lack of nutrition) to heal well and the lining of the intestines was too thin and weak.

So for me I think nutrition is a thing to take seriously and to use a food/protein sumplement if food is not giving you what you need.
 
Thanks for the info, Sanni. I think if my condition doesn't improve, they'll put me on parenteral (IV) nutrition.

CheerBear, I really hope your surgery goes well. It sounds like you've been through enough already.
 
Have they brought your surgery forward Rachel? It was supposed to be May?

Just had a stay in hosp with blood clots again :(

Good luck Dukeis and Boloby xxx
 

Dukeis

Dynastic Overlord
They gave me a kit yesterday that has a practice stoma in it. Sure hope the real one isn't anything like this thing. It is hard as a rock! It looks like a dried up sponge. It is pretty cool to try it in different places and kind of get an idea where the best place for it will be.
 
I got one of those kits too. It is a dried sponge. :ack: However, a real stoma is squishy like a noodle. You're gonna have fun touching it!
 

annawato

Moderator
Staff member
Boloby I was in hospital on TPN for 4 months before my last resection and ileostomy. The main thing they are trying to improve is your protein (albumin) levels since this is essential for healing. Because I was in hospital for so long I was VERY unfit and the postop week was the hardest I've been through plus the rest of my recovery is very slow - wound infections plus just not feeling well. So It is essential to be as fit as you can be and to have really good nutrition beforehand. Not always possible when you are sick but something to work towards.
Kaz, hope you are well now - blood clots can be a worry.
Dukeis, all the best for your op (again :) )
 

Dukeis

Dynastic Overlord
Sitting at the table last night eating my 17 year old tells me what I need to do when I'm awake enough after surgery. He said I need to ask the nurse what the hell did you'll do to me. I came in to have my tonsils removed, what have you'll done. He said just think of how shocked they would be and they would be frantically trying to figure out if I was right. The kid has a bent sense of humor, but I thought it would be funny. :lol2:
 
OK, so I just learned that the bag will be temporary (few months). Now I'm interested to hear from people who have had this. I did several searches but couldn't find any existing threads about the issue. I've read numerous threads and posts about permanent bags, so I'm wondering how much better people are doing after having just a temporary bag.
 
CrohnsHobo, LOSTnut, MsOJ have had colostomy and reversal. You might send them a message or hopefully they will see this now that I've tagged them and be able to tell you about it. There are others who have had ileostomy and removal, but I thought you had mentioned colostomy.

Did you find out more about what the surgeon will be doing? Are you having part of your colon removed?
 
Did you find out more about what the surgeon will be doing? Are you having part of your colon removed?
What I know right now is that the entire colon needs to be removed, but the question is whether they can time it to coincide with my liver transplant. I've only spoken with the doctor who diagnosed me; I will meet the surgeon and her team once I get an appointment scheduled.

The reality of my situation still hasn't hit me. It still seems like some remote future, even though it's probably very soon.
 

annawato

Moderator
Staff member
My first ileostomy was temporary and this one may be. I had the first for a year and was relatively well when I had it but started getting problems as soon as I was reconnected. A year and a half later i ended up with this one which may or may not be temporary depending on how I'm doing. There are no medications left to control my crohn's so the ileo is the only alternative but doesn't ensure the crohn's won't return upstream of it.
Samboi has a temporary ileostomy for bottom problems - so far it hasn't helped but things are improving with medication so she may get a reversal later this year.
I think it depends on what you are having the stoma for as to whether it is successful both during and after the reversal.
Is your liver condition crohn's related? I really feel for you having to deal with that on top of everything else. I know what you mean about not 'feeling' the reality of the situation. I guess its the minds way of coping with what is a very 'unreal' situation. Probably good to be feeling like that and taking one day at a time rather than worrying and obsessing about the future.
 
Yup - I have a temp ileostomy due to severe perianal disease.
There are still significant problems with inflammation - but I'm getting there.
Reversal was going to be last Xmas - currently looking at Aug - Sept if current meds do the trick and get it under control.
Looking good so far and I'm very excited about the possibility of going back to regular pooping.
 
Is your liver condition crohn's related?
Well, my liver problem is because of an autoimmune disease (primary sclerosing cholangitis), so it's possible there's some relation. I was diagnosed with both in 1999 but was symptom-free for years. Crohn's struck first, in 2008, followed by the PSC in 2011. I was put on the liver transplant list last April.
 

annawato

Moderator
Staff member
Well, my liver problem is because of an autoimmune disease (primary sclerosing cholangitis), so it's possible there's some relation. I was diagnosed with both in 1999 but was symptom-free for years. Crohn's struck first, in 2008, followed by the PSC in 2011. I was put on the liver transplant list last April.
Gosh that is really hard to have both. I just read that it is common for people to have both diseases and that liver transplants are very successful in treating the disease. I hope you can have your transplant soon so that you can get on with the rest of your life. It must be very frustrating waiting. Hugs.
:heart: anna
 

Dukeis

Dynastic Overlord
Thanks everyone for asking! I'm camped out at a hotel tonight with the family. To far to drive in the morning. Have to be at the hospital at 6:30 am. I'm getting really nervous now. Wishing someone would say just kidding you don't have to do this.
 
How cool to be in a hotel with your whole family! It's like a mini-getaway. See? You can turn it into something groovy....a distraction. :)
 

Terriernut

Moderator
We're all rooting for you! I'm sorry you need to go through this, and I know you would much more like to be anywhere else than going through this.

I can only wish you the best for your proceedure, and may you heal quickly and find health and a life time of remission.

:ghug:
 
Hi, My name is Cathy and I had my ileostomy on January 18th. I hate to admit this but I think I would rather have the pain of the fistulas and abscesses back. The doctor keeps telling me things will get better, but it is hard to believe him as I swallow my Imodium and opium.
So, here I am, hoping to learn from all of you who have been where I am now.
 

Nyx

Moderator
Hi Cathy...it really does get better..I found it took me 3 months to get back to 'normal'. Hang in there! And welcome to the cool kids club :)
 
Hi there Nyx, thanks for your encouragement. This bag is tricky.....just when I think I know what I'm doing, I wake up with a leak. What a way to start the day.

The doc has me drinking only Pedialyte because my kidneys keep failing and I'm taking opium along with a zillion other meds. It is hard to see the light at the end of the tunnel, but I believe all of you thst tell me it's there. Again, thanks for your kind words.
 

annawato

Moderator
Staff member
Hi Cathy and welcome to the forum and the stoma sub forum.
It does get loads easier as time goes on. The first few months are definitely the hardest so you are nearly there. :)
Any questions you have, ask away. There are no silly questions in this group. If you start a new thread for any questions you will probably get more responses than in this thread but you can also ask questions here if that is easier for you until you find your way around the forum. At the top of the stoma sub forum page there is a thread titled stoma support good advice for you, or you can follow this link-
http://www.crohnsforum.com/showthread.php?t=45979
There are lots of handy hints and we are trying to add to it all the time so if you have any handy hints post them there.
Looking forward to have you in our little group,
 

annawato

Moderator
Staff member
Hi everyone, I'm going away on Tuesday for 11 days so may not be around as much. Hopefully we will get mobile reception where we are staying so I can keep in touch but if not just think of me sunning myself on the beach. Actually scratch that cos I don't have a swimming costume that fits me anymore since they fattened me up so much in hospital - I'll just have to hide under our caravan awning!
 
Hello Anna, Thanks for the welcome. I'm not very computer savvy, so I appreciate the hints. It amazes me how many people are dealing with the same issues I am having. Truly makes me feel better just knowing I am not alone. My biggest problems right are liquid output and my kidneys keep failing because of dehydration. My doctor has me on Opium and Loperamude. These are helping sometimes byt nit always.
I hope you enjoy your holiday and look forward to getting to know you.
Cathy
 

Dukeis

Dynastic Overlord
I'm still alive! Barely. Sorry have not been post. I resp.arrested the night of surgery. It has been a whole lotthen I hoped for. This all I have in me right now.
 
Oh no!!! Glad you are still with us, Dukeis! Hang in there... Can't wait to hear the whole story when you are more up to it. :getwell:
 
Hi, My name is Cathy and I had my ileostomy on January 18th. I hate to admit this but I think I would rather have the pain of the fistulas and abscesses back. The doctor keeps telling me things will get better, but it is hard to believe him as I swallow my Imodium and opium.
So, here I am, hoping to learn from all of you who have been where I am now.
I had mine on Jan 11th and my wound got infected. Just got my wound vac off last week. It's been a long road but its getting better everyday. Hopefully it will get better for you.
 

annawato

Moderator
Staff member
Hi Cathy, I have very liquid output too. 3+ litres a day. The thing that has helped me most is amitriptyline which is an antidepressant but it causes constipation so is excellent for slowing down the output. I can now get 6 hours at night without having to empty the bag which is a god send. Ask your doctor about it - I was put on it by my IBD specialist.
I'll write more about liquid output when I have more time,
:heart: anna
 
Today 5 years anniversary with my ileostomy. Does not feel like that long of a time. Happy I have it.
 
13 year anniversary for me. I don't remember the actual date, but it was just before Easter and I was in hospital over the Easter weekend.
 
Happy stomaversary, wow there are days I don't think I will even get to my first stomaversary.

Tomorrow is my 14th wedding anniversary.
 
Ok, I am about to show my ignorance of all things computer. So many of you have shown your support underneath my post. How do I do this? Also, under my bio it says 0 thanks in 0 post. How do I thank you all fir your helpful words and support?
 
Hi Cathy.

To show support, just click on the "Hug" in the bottom right hand corner of the other person's post; to thank, click onto "Thanks" in the same place on the other person's post. :)
 

Dukeis

Dynastic Overlord
I'm Home! Doing better. When I have more energy I'll post the whole story of my surgery. My wife said I always have to be different. I sure never set out to be with this surgery, but I did.
 
Hey everyone! My husband is the proud new owner of what he lovingly refers to as his "poo-poo bag". He has actually been so excited to have it -- it means no more desperate bathroom runs for the foreseeable future! He's still in the hospital recovering from surgery. We had gotten our hopes up that he could have come home today, but the doctors (upon noting his pain level and insufficient stoma output level) are concerned about a possible blockage. So, he's stuck in the hospital for probably another couple of days while they run their x-rays and whatever other tests and/or procedures necessary before he can come home.

Thanks for having this support group available!
 
Welcome to the forum and welcome to the stoma club! All the cool kids are getting them these days, don't ya know. ;) Fingers crossed that your husband will be coming home soon. Very few of us here have escaped the initial surgery without some kind of glitch. Have a look around the forum and if there is anything we can help you with, feel free to ask.
 
Best wishes for surgery. Make sure you take your teddy bear in with you. I do, in fact if I have to sleep anywhere away from home, he comes with me! No I'm not telling you how old I am, but I got the Beatles autograph before they were famous...that's the only clue.
 
Update on my hubby:

Went to go see him yesterday evening with my MIL and our son. Hubby was so happy to see the boy, and vice-versa. He's doing better today than he was yesterday, he tells me. Still not in tip-top shape, but making progress. Still is going through a lot of pain with very little energy, but he did get word back from his team of doctors that they weren't particularly worried about his low stoma output levels. They seemed to decide that it would straighten itself out if given a little more time. So, now we just have to get him off of the IV pain meds so he can come home! He's hoping for 2 more days at the most, but I'm thinking that's more likely to be a minimum, considering the time it will take to wean him off of those IVs.

Thanks for keeping all of us in your thoughts and prayers! We all truly do appreciate it!
 
I've got a Henry---a stuffed dog I've had since I was 4. He's an ooooooold dog, but goes on every hospital trip with me. I get smirks, but the joke is on them. :biggrin:
 

Nyx

Moderator
I have a hospital kitty...it's got magnets in its paws so I can stick him anywhere :)
 
Good Luck with the surgery...give 'em hell if they don't give you pain relief!

Get back to us as soon as you're feeling like it. Thinking of youX
 
Just wanted to give y'all my most recent (exciting!) update on my hubby:

Just got word from him that he's doing great again, despite the fact that it's been 6 weeks since his last Cimzia dose! Says that he can now eat chili (a food that used to give him all kinds of digestive trouble) without an issue, thanks to his stoma! Also, that the doctors had gotten him back on the hydro-cortisone suppositories, which are helping with some of the pain. I'm soooooo relieved!! He's hoping to be able to come home on Saturday :)
 
After almost 2 weeks in the hospital, my hubby's finally coming home today!! It sounds like he's doing fantastic, in the least amount of pain he's been in for the past 2 years. Thanks be to God! I'm so happy right now, I thought we'd never see this day!!
 
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