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Update on Jer's Girl

Well, I’m just two days away from finding out if I am getting surgery or not. I am very excited and nervous and just need to know so that I can prepare for whatever is next.

I did the liquid diet thing for a week, finally had a BM a few days ago (Thursday or Friday I think), but haven’t had one since. Before that, I had gone a full two weeks with no movement.

After hearing all of the testimonials of people who have had resections on here, I really want that to be my answer. Now I am just afraid that my Dr won’t want to do it.

Is there really anything else that can be done if your intestines have narrowed and twisted? Absolutely nothing can get through unless I am on a liquid diet, and even then, not much. I have been having problems with this for months; they just didn’t know what was going on. I really hope to be getting this taken care of soon. Not knowing what is going to happen is killing me!

I know I am posting too much, but really the only thing that makes me feel sane is “talking” to all of you. Thanks again for listening.
 

imisspopcorn

Punctuation Impaired
Hi Jer's girl...Don't ever worry about posting too much...You have legitimate concerns so don't ever be afraid to ask for support. This is a support forum.....When I was getting close to surgery, I did consult with a surgeon beforehand. He was unable to review my CT scans and just took one look at me and decided I was not in that urgent of a need for surgery(....I did look great the day I saw him. I was having a great day that particular day...)Make sure you have all your films/ tests with you or sent over....I ended up using the surgeon who followed me on my previous admissions...After the third go round he finally said I needed surgery....If you can have someone come to your appointment who can convince the doctor how sick you have been feeling, make sure to bring them!...Good Luck!
 
Good advice Imisspopcorn! I must admit, I am always taken more seriously the worse I look. I will be sure not to wash my hair that day or put on make-up so that I can look extra pathetic. Crying never hurts either. ;)
 
Hello Jer's Girl!

I just went through exactly the same thing! For months I was told by doctors that there was nothing wrong with me and that I would have to go home and just live with it. Finally a doctor took me seriously and was shocked during surgery to find out that my small intestine was covered in adhesions (scar tissue) that were blocking a strangulating my insides. I couldn't eat anything but broth and juice for months. Sometimes I would even get blocked from the juice. For 4 hours the doctor worked to remove the adhesions. He finally stopped when he reached my J-pouch (I had my colon removed in 2003 and the doctor did sort of a cut and paste with my small intestine, fashioning a fake colon, in the shape of a J out of the small intestine.) He didn't want to damage the J-pouch that would result in a permanent ostomy (bag). Unfortunately the problem was not resolved. I tried every medication and diet and nothing worked. Months later I opted to have the ostomy surgery. I had gotten to the point where I had no quality of life anymore. I was terrified to eat and if I wasn't blocked then I was overcoming a blockage which meant profuse vomiting and diarrhea.

The ostomy proved a success!!! The reason the first surgery didn't work is because there were more adhesions. My doctor had to remove 1/3 of my small intestine (I'm an extreme case) and resection the rest. This was done on Jan 6 of this year. Just about a week ago I turned a corner both physically and mentally. I'm doing quite well now. Adjusting to the bag and also the life of a person who is not sick. I was surprised at how much I identified with that.

Good luck with everything!!!!! I wish you well!!!! Sharon
 
Wow Sharon, you sure have been through a lot! Thanks for the information and support. I'm glad that you are doing so well now. Thanks for sharing your experience with me.
 
Thanks Samantha!

I'm feeling a bit down today. I'm not feeling good and I missed work again. Hopefully I will get some good news tomorrow.
 
So today is the day I see my Dr. I am really hoping for some good news, esspecially since I woke up this morning with a BOIL ON MY FACE! It is under my eyebrow and pushing on my eyelid. I really feel like someone is having a cosmic joke at my expence lately.
 

Crohn's 35

Inactive Account
Ouch, that sounds nasty! I get sty's but those are normally on the eye lids, usually from a hair folicle. Good luck today, let us know about your surgery and that boil. Hugs!
 
Thanks guys. I sure need hugs today. I am in a ton of pain. I have to wait until 3 to see my Dr and the wait is killing me. I have so much cramping today, but I still can't go. I had that one BM last Thursday and I haven't gone again since. Hopefully I will have some relief soon.
 

imisspopcorn

Punctuation Impaired
Geez girl, you are getting hit hard with this stuff! I hope your appointment goes good...Feel better. (((hugs)))
 
Thanks for the hugs ladies. I needed that.

I still had a little bit of pain meds left over from my last ER, so I took those and am feeling better. In a way it is good that I am feeling bad today because I feel like I am always taken more seriously if I go into my appointments feeling bad. Looking sickly never hurts either.
 
Well, it's almost time for my appointment. I will try to post tonight and let you all know how it went. I know you are all rooting for me and that will make this all so much easier!
 
So I am going to see a surgeon for a consultation. It looks like I might end up with a bag for a while. I am really scared and have mixed feelings. I am trying not to worry about it too much until after I hear what the surgeon has to say. So far I have an appointment for May, but my Dr is trying to get me in sooner.

Meanwhile, the boil above my eye is huge. I am on antibiotics for it now. I just have to hope that it goes away sooner than the one on my stomach did. It is really horrible.

I feel like curling up in a ball and crying. Thanks for all the support guys. I really need it right now.
 

Crohn's 35

Inactive Account
Jer's girl... I can understand your scary feelings of not wanting a bag, it is not something I want to have to do either, but if it is a temporary one it could be the best thing for you! I could tell you not to worry but our brains have a hard time wrapping stuff like this around our heads, not just a vain thing but makes us feel like an alien. The antibiotics should work, your doctor didnt give you anything topical for your boil? You have to be strong, and you are an amazing person, always rememeber that, everything in the long run is worth it, trust me... with age comes wisdom. So I am old enough.
 

Astra

Moderator
I second that Pen!
I'm old too!

Hang on in there and we are rooting for you! Jer's girl
big hug your way
love
Joan xxx
 

Nyx

Moderator
Having a bag isn't that bad! I thought it would be horrible, but it's almost normal now :) Besides, it's worth it to be rid of all the symptoms I used to have of Crohn's. If you have any questions or concerns about it, feel free to PM me, or ask me here...I'm not shy talking about Oscar! lol

Good luck!
 

ameslouise

Moderator
The anticipation and wait is the worst! Hopefully you can get in sooner so you can get a final answer.

I had a bag for a year and it was great because it brought so much relief!

I had emergency surgery after my colon ruptured so I didn't have time to think about it - just woke up and it was there!

Be strong. We're all hoping for the best for you!! - Amy
 
Thank you all so much for your support! Nyx, if I end up with a bag I was already planning on getting lots of advice from you. :)

Sooo I'm off to the ER again! I have never been to the ER so often in my life. My boil is now huge, the whole right side of my face feels bruised and I started vomiting this morning. I also had a 102 degree fever. Now I can't even see out of my right eye, and red lines are coming out of it. My whole eyelid is dark purple. I look like i was in a bad fight. I feel so sorry for myself! Wish me luck, and not too much pain in the ER.

Like I needed one more thing to worry about, right?
 

Crohn's 35

Inactive Account
Good luck kiddo, everything will be just fine!!!! Just tell the doctor's you bf punched you out, you will get more sympathy lol. Kidding. Muah! See ya when you get out!
 

Nyx

Moderator
OMG...not so good! I hope they drain it and get you on some antibiotics right away! Good luck!
 
So I'm finally back home after three days and two nights in the hospital. The infection on my eye lid infected the rest of me so I had to stay in the hospital and get some heavy duty antibiotics. I am so glad to be home.

I still don't know what is happening with the surgery. Sigh.
 

Crohn's 35

Inactive Account
So you are out and no surgery for your Crohns? That sucks, I hate being in the hospital and was there last month... I didnt know what was up either. When do you go see your surgeon or Gi again?? You must be frustrated... are you still in pain? Hang in there.
 
Location
USA
Wow, I'm sorry you had to be hospitalized but I'm so glad they got the infection undercontrol - that's scary stuff!!! Glad you're home, too - I never get any rest in the hospital!
 
I am so frustrated and sad. I still don't even know when I will get to talk to a surgeon as my GI still hasn't called me back about it. Meanwhile, I am passing some stool but still very infrequently and never very much. I am so backed up and uncomfortable. I just don't know what to do. I am on a soft foods only diet, but I'm not quite sure what that means i can eat. I will look on here for information.
I will call my Dr again tomorrow about the surgery.

Thanks everyone for caring about me and giving me support. I have been through a lot with this disease, but this has been an especially hard year. Hope all of you are well tonight.
 
PS- don't you think my GI should at least do a colonoscopy? Not that I want one, but I haven't had one since July and with all that is going on, it seems like the thing to do to me. It would be hard to get cleaned out for it though, but maybe good for me. I haven't had a normal BM in so long. Not even normal for my crohns, which was never normal to begin with.
 

Crohn's 35

Inactive Account
Hi Jer's girl, I dont recommend this lightly but have you tried a glycerin suppository? It could help. You havent done a colonoscopy yet???? That is the first thing most GI's do! I would ask your Gi why he hasn't done one and you are worried something is going on. The scope will give him and you instant results. When do you see him? You shouldnt be suffering this long...
 
Location
USA
Jer's Girl said:
PS- don't you think my GI should at least do a colonoscopy? Not that I want one, but I haven't had one since July and with all that is going on, it seems like the thing to do to me. It would be hard to get cleaned out for it though, but maybe good for me. I haven't had a normal BM in so long. Not even normal for my crohns, which was never normal to begin with.
Wow, I didn't read your last few posts closely enough - you were in the hospital and they didn't do anything about about all the pain/constipation??? Did they try enemas... or anything? I wonder about the colonoscopy - would the prep cause major problems trying to move things past the narrowed/twisted parts (I don't know, just thinking out loud here)? Your GI really needs to get moving and get you in to see the surgeon as soon as possible - like Pen said you really shouldn't be suffering like this.
 
Thanks guys. No, they haven't done a colonoscopy yet. I am kind of having a nervous break down today over everything. I am still having a lot of pain and still no answers.

I called my Dr today and his nurse called me back and said that they for sure would call me back and let me know what was going on so today as soon as she spoke to my Dr so I kept my phone in my hand literally all day waiting. I guess someone did finally call me back just after two, but for some reason it went strait to voice mail and I didn't realize what had happened until the office was closed. The message didn't say anything except to call them back. I can not believe my luck. I feel so terrible, and my guts just feel toxic. I'm going to go cry some more now and hopefully will find some way of dealing with this emotionally and physically until tomorrow. All of your support is really helping to get me through.
 
I'm sorry to hear all that you've been through Jer's Girl. I can't imagine how I would be dealing with it. A colonoscopy would be helpful, but as you said, if you aren't able to pass anything it might be difficult to get you cleaned out. Also, I know when I was in the hospital before I got diagnosed my surgeon was very against getting a colonoscopy until my inflammation was completely gone. He didn't want to risk perforating my bowel. Perhaps since you don't even quite know what's going on, they might want to hold off on a colonoscopy. But, that would be something the GI and surgeon would have to figure out. I really hope you get some answers soon. I know how hard anxiety is to deal with. Sending all my positive thoughts towards you!! Hugs!
 
Thanks dreamintwilight. I'll take all of the positive energy i can get! Also, your thoughts on why i haven't gotten a colonoscopy sounds solid. Thanks.
 

Astra

Moderator
Hi Jers girl
This must be horrible for you, all this waiting and pain, and that does make sense what Marisa said about the inflammation and not scoping you.
I know you've just come out of hospital, but can't you go back, via A&E, and get some pain relief, you shouldn't have to put up with pain like this.
Don't know how old you are, but if you were my kid, I wouldn't leave A&E til someone had sorted you out,
Just hang on in there, hope someone phones you tomorrow
sending big hug your way
Joan xx
 
Thanks Joan. At least I have some pain killers now, for whatever that is worth.

It looks like I will be going to the Mayo clinic in AZ for my surgery. I still don't have all of the details worked out yet, but the ball is rolling. I'll keep you all up to date as I know more.
 
So here is what has been happening-
Last Wednesday, I got an appointment to see a surgeon on May 4, but my Dr promised that if he talked to the surgeon himself he could get something sooner as i cannot wait until May 4. He never called me, although I have called everyday. So, I was trying to get an appointment for the Mayo clinic-I wont go into all of that except to say that I finally got an appointment set up for April 20th, with the directions from the clinic to call back every day and see if anything opened up. My Dr's nurse said he said that he thought it was a good idea and he wold write me a letter of recommendation.
Then the insurance company informed me that I actually had to get approval from my general Dr, not my GI, and as she hasn't seen me for this (duh) she would not approve me. So i told her to talk to my GI Dr, and after she did, they decided together that they would not write a recommendation because it would be better if I could see someone here, although they still don't know when that will be because apparently the surgeon has bee out of the office all week and so my Dr will have to talk to him on Monday at the earliest.

Meanwhile, I am still having pain, and I still can't go to the bathroom. There is a huge lump of what i can only assume is poo gathered on my left side that is very tender and hard. I have missed a whole week of work due to pain. I feel like something bad is going to happen to me and I am helpless. Has anyone else ever been jerked around like this? I am sort of in shock. They keep telling me that I could have a rupture and that I need surgery, then nothing happens. I just don't know what to do.
 

Nyx

Moderator
OMG Jer's Girl....I can't imagine being jerked around like that. They KNOW you have an obstruction and yet they won't set up surgery for you? I suggest that you go to emerg and shriek and yell and tell them that you're in so much pain you can't stand it...that's how I got my surgery (well, I really was in that much pain, but nevermind about that!) I don't know what else to tell you. I feel so bad that you can't get the care that you need. I'm just thankful that we don't have to deal with insurance here in Canada (well, not much anyway).

Good luck...I'm thinking of you...
 
Yeah, that is just plain awful! I wonder if the Mayo clinic might be able to help you if you explain your doctor's refusal to write you a letter and inability to schedule you for surgery in town. Maybe the Mayo clinic could talk to your insurance company or something). Or maybe you can find a new GP that will write you a letter. I'm so sorry this is such a pain to get figured out.

But of course, if you feel you MUST get this done ASAP and can't wait to hear back from new doctors etc. again, I agree with Cindy. Go to the ER and tell them you need attention NOW! I'll be praying for you! :)
 

Astra

Moderator
Oh god this is awful!

I feel so much for you right now hun, please go to A&E (ER) I know I've said this before, but this just wouldn't happen in the UK with the NHS, I'd phone an ambulance.
Like Cindy said, just scream for medical attention, lie down on the floor if you have to, if you're blocked, you're in serious trouble, worry about the bills and insurance later.
hoping you'll be ok
take care
Joan xxx
 
Location
USA
Jer's Girl said:
So i told her to talk to my GI Dr, and after she did, they decided together that they would not write a recommendation because it would be better if I could see someone here, although they still don't know when that will be because apparently the surgeon has bee out of the office all week and so my Dr will have to talk to him on Monday at the earliest.
That is inexcusable - completely, totally, inexcusable. I'd really like to give all your docs a piece of my mind - you should be a top priority patient; you should be getting immediate help from your doctors. What in the world are they thinking????? I'm so sorry all this is happening to you. You deserve such better care than you are getting, especially because you're in so much pain.
 
Thanks for the support guys. You have no idea how much it means right now. I feel like I should go to the ER again, but what is the point? All they can do is take another CT Scan and if I don't burst while i am there then they will have to just send me home. I don't understand how a person can go this long without having a BM at all.

When I saw my Dr last Wednesday, he said that he could still hear bowl sounds. They said that they could hear some when I was in the hospital too. Still, I haven't had a BM in WEEKS and before my last one, it was WEEKS before that. I have been on stool softeners, but all that does is make me cramp up with no results. The huge hard lump on my left side scares me the most. It is so sore. I am really at a loss right now for what I should do. I feel so helpless.
 
I have been on a soft foods diet, but should I go back on a liquid diet? I am so scared of doing the wrong thing right now.
 

Crohn's 35

Inactive Account
Hey kiddo, you have been through the wringer!!! If you are in pain I would stick to a liquid diet, boost, ensure, what ever you can get down. That is so strange that they are letting this go so long. I would be really upset by now, and telling them to do something now! You have to have bowel movements, and clear the bowels or infections and perintonitis can set in. You may have to be demanding to get somewhere. I know I had to and my docs and surgeon and Gi at that time were fighting what is to be done and I said "Give me my files and I am going to another doctor and hospital, now...my gp called the gi and set up an appt in Toronto. Got dx with Crohns the same appt I got there! Needless to say my gp quit being a doctor because of all the crap going on. You have to do something soon. I hope you get out of pain soon. Hugs!!!!
 
Wow, I can't imagine what you're going through. I thought I had doctor problems, but reading about your situation makes me feel so awful for you!
I agree with the rest, don't stop making a fuss. Hang in there and hopefully somebody will finally help you out. it seems so unfair!
 
Thanks Meltric!

So last night some loose poo finally started getting through a little at a time (about two table spoons at a time), about every 20 minutes to an hour and hasn't stopped all day. I am grateful that something is finally getting through, but it is so little so often and i am in so much pain and have so much cramping. The site of my blockage hurts soooo much. This is some of the worst pain I have been in in the last year. I almost can't move. At what point do you take pain like this seriously? I want to just be grateful that i am having movement, but my guts hurt so much. Once again, if any one has any advice I would love to hear it.
 

Crohn's 35

Inactive Account
Hey Jer, depends what country you are in, the Bentylol 10mg (Dicyclomine) was not covered by my insurance because the pharmacist said you can get it behind the counter without a prescription. Which is weird because Buscopan is a prescripton and doesnt work near as good and is covered :confused2: .

Dicyclomine helps when you take it with food, but take it when you know it will start up. Takes an hour for it to work. Hope it helps, let me know how you do ok? :)
 
OK, so I am FINALLY meeting my possible surgeon today. Please wish me luck. I am so nervous about the appointment and the outcome.
 
I've been thinking about and praying for you! So glad you are meeting with a surgeon today. Hopefully it means you will be getting some relief very soon :)
 

Astra

Moderator
Hey Good Luck Jer's girl

hope today is the day for answers at last! and some meds too
thinking of you
xxx
 
Thanks so much ladies!!! I'll be thinking of my Crohn's cheerleaders when i am going through this today! Knowing your guys are out there will help me to be strong. :)
 
Well, within the next two weeks, I will be getting surgery and ending up with a bag. My Surgeon thinks that i will end up with a permanent one, but he is willing to try the temporary one first. This is all a bit much for me to handle right now but I wanted to let everyone who has been supporting me know what is happening. I'll keep you updated as I know more. Thanks again for your continued support.
 
Hang in there, girl :) I know it must be overwhelming at first, but it will get easier. Feel free to vent as much as you want/need on here. I'm glad they are figuring things out for you finally. So glad you won't have to live with the pain anymore!
 

ameslouise

Moderator
Glad you finally have an answer and will be getting some relief soon. Upcoming surgery and getting the bag - lots to process and you must feel overwhelmed. We're all thinking of you and wishing you the best. I hope the next two weeks go by really quicky for you.

Sending hugs and lots of spport your way -Amy
 

Nyx

Moderator
I'm glad you finally have an answer and that you'll be getting some relief soon! You'll be in my thoughts :)
 
Location
USA
Jer's Girl said:
Well, within the next two weeks, I will be getting surgery and ending up with a bag.
(((hugs))) I'll be praying that everything goes well for you - it's time for you to get some relief!
 
Thanks so much guys! I didn't let myself linger on feeling sorry for myself for too long- not even a whole day! Today i started looking up one piece bathing suits for my honey moon. Nyx, what do you use for swimming? Will a one piece cover it?
 

Nyx

Moderator
http://www2.victoriassecret.com/commerce/onlineProductDisplay.vs?namespace=productDisplay&origin=onlineProductDisplay.jsp&event=display&prnbr=GL-253753&page=1&cgname=OSSWMOPSZZZ&rfnbr=158

That's the suit I have...it's fantastic! But any one piece bathing suit will work. You can get small closed bags that I use for swimming. Just know that you can't stay in the water too long as your flange might fall off....lol I've been in for on average about half an hour. I also bought this...

http://weircomfees.com/index.php?main_page=product_info&cPath=5&products_id=6

...but it didn't work very well for me for swimming. My stoma's a bit below my waist so the latex had to go over my hips so I couldn't wear it under my bathing suit and it kept rolling up. It's great for showers though.

I'm waiting on another belt I got on ebay to see if that works. I'll let you know when it arrives how it works. The drier you can keep the flange, the better off you'll be! You don't want to be changing it too frequently as your skin will get irritated. I'm also going to try using the tape they covered my incision with when the packing couldn't get wet after surgery. I need to find a source for it though. If I find that, I'll let you know about that too..lol I'm still learning myself!

Good luck..and enjoy your honeymoon!!!
 

ameslouise

Moderator
Hurray for honeymoon!

When I had my bag, I wore a two-piece that came up high to my belly button. It was a skirted bottom. I had to go up a size. It was very comfortable!
 
Cindy - That's a super sexy bathing suit ;) And how cool that you can walk from the beach to a restaurant right in your bathing suit and no one would know it wasn't a dress! Haha.
 
Thanks so much ladies! It will be interesting to see how swimming works. It will be one of the big hurdles like intimacy that I hope wont be too much of a problem for me.

My surgery date is April 13. My work is being super supportive, and so is my family so i am feeling pretty good about things. My future husband is excited to see me living free of pain (fingers crossed) and he is hoping that this will mean that I will get to join him in his active lifestyle doing things like hiking and biking that i never would have been comfortable trying before (no bathroom access means I don't get to participate). I really hope that this changes my life for the better the way that it has changed yours Nyx. i have a feeling that i am going to be looking to you a lot for advice with this.

Is your bag permanent? It looks like mine is going to be. Just wondering.

Thanks once more for the support guys! It means the world to me right now. :)
 

Crohn's 35

Inactive Account
Yay! The 13th is a lucky number! I know things will go just perfect for you and it is so wonderful you have family support and a finance that is willing to go the mile! Always keep us posted, we are all here for you! (((HUGS)))
 

Astra

Moderator
Yay Jer's girl
This is good news!
Hope everything works out for you, which it will with your fantastic positivity and wonderful hubby to be!
Happy Honeymoon!
Lotsa luv
Joan xxx
 

Nyx

Moderator
That's great news Jer's Girl! Hope it goes smoothly for you! And remember to walk asap, even if you don't feel like it and want to kill the nurses for making you...lol

My bag is permanent, so I kind of had to accept and embrace it! Mind you, it hasn't been that hard. The trade off has been worth it...hopefully it will be for you too!

Take care!
 
Good luck JG glad you are finally getting your surgery and hopefully a life back! Im sorry i missed out on what has been happening with you lately it sounds like you have been having a very very rough time. Im glad you have come thru it and obviously the others have been of great support. All the best for your surgery and a speedy recovery.. can't wait to hear how it all goes.

P.S. When do you get married?
 
Ladies, thanks again for your support. All of the hugs are always very welcome.

Nyx, I am fairly certain that mine will become permanent too, although I don't know for sure yet. I know that they at least have to remove a portion of my rectum. I'm so glad I have your positive energy leading up to this! It's nice to hear from someone who has been through it. I like your swimsuit ideas. I'll have to try to figure out how to show you guys the ones that I ended up getting.

Tan, I will become Nicole Osborn July 24 (I finally let you guys know my real name! Big step for me. :)).
 
Oh very good it will be the best day of your life.. mine was, although I was sick on the day... go figure!!!!! Glad everything will get sorted now for you so that you can enjoy the day!

Ha..ha.. was wondering what your first name was and yes you do have to put up a photo it is always nice to put a face to a name :) And maybe a little more info like how old and where do you live??

Ok babe well best of luck for the op in 2 weeks can't wait to hear how it all went.
 

Nyx

Moderator
Yay Nicole...first the name, then the pic! How progressive!! It's always nice to put a face to the name. I need to get a new pic up of myself...as the one I have up is quite old and pre-Crohns. One step at a time...

In regards to removing part of your rectum...talk to your doctor and if you decide that you want your ostomy to be permanent (or they think that that's the best thing for you), have them remove the whole thing while they're there. I didn't get the choice and now I have to go back and get it all removed. I would have preferred to have it all done at once. It's a big decision and will require alot of thought but one surgery is better than two. I'm actually surprised that they didn't take the rest of my stuff out, as it's all diseased....oh well, guess they can't get consent when you're out cold....lol
 
Hi Nicole,
I guess we can be ostomy surgery buddies. My surgery is scheduled for April 15th and mine will be permanent.

Lets hope we both do great! And I'm sorry you have to go through this - it's so unfair for someone so young. I kinda feel that I'm having an eaiser time accepting it at 43 then I would of years ago. Or maybe I'm just ready to feel better!

Here's to the road ahead and better days for both of us.
 
Hi there Nicole - I was checking out bathing suits last night and thought of this thread...there are a few suits on jcrew.com that are the two-piece kind but the top is like a tank top. However, instead of being tight, a couple of them have a top portion where the abdomen is quite loose. Perhaps you could try something like that - allowing easy access to the bag as well?? I don't have a bag, so I don't really know what I'm talking about but I thought maybe they'd work. A little pricey though :( I hope everything is going well!!
 
RachLG, thanks so much for the swimsuit idea! I'll check it out. :)
CDDad, our surgery's are so close together! Here's hopping we both get what we need out of them.
Tan,Dream, and Nyx, thank you all once again for your support and advice! It is always helpful and appreciated. :)

So my time is coming up. I saw the wound specialist today, and she mapped out where the bag is going to be. My wonderful step mom and Jer were both there to support me and to help me retain what I was learning. They both had a lot more questions than I did and were very helpful.

I have been in more pain than ever waiting for the surgery and can not eat at all. I tried to eat a few bites of baked chicken and potato salad on Easter and it was awful. I can not wait to get this done!

Just an observation but it seems like a lot of us are getting surgery all of a sudden.
 
Only 8 days left! It's so close! I know how you feel about not being able to eat much. While I didn't require surgery, I was pretty bad right before I went into the hospital for my abscess. I could only eat a few bites of things without feeling terrible and doubled over in pain, so I can only imagine what you must be going through. Stay stocked up on your protein drinks just so you're getting the nutrition you need :)
 
Hey Nicole! I was thinking about you yesterday. I hope your surgery went well and you're on the road to recovery! Can't wait to hear from you to let us know how you are doing :) Best wishes and hugs!
 
Jer's Girl, your story was the first one I read when I found this forum, and though I don't think I've ever written anything here, just wanted to say that I hope your surgery went well:). update as soon as possible!!
 
Thanks for thinking of me guys! My surgery went well and I will write again once I am feeling better and get out of the hospital. Just wanted to let you all know that I am okay.
 

Crohn's 35

Inactive Account
I wrote on your other post! LOL. Please keep us updated,,,, cause my crystal ball is in the shop...again! LOL. Glad you are getting better woo hoo!
 

ameslouise

Moderator
Glad it went well - best wishes for speedy, easy recovery. Take it easy!!

Keep us posted on your progress, but only when you're up to it. Don't push yourself too hard!

-Amy
 
Hi guys! Sorry I haven't posted. I have been around on other peoples posts, but I wasn't quite ready to go into my whole story. Sorry if any one was worried. Thank you dreamintwilight for the personal posts you sent me. They meant a lot.

So here it is in a nutshell. I went into the ER about a week before my surgery date because i was in so much pain, and luckily, they just kept me until my surgery date.

The surgery itself went really well, an there was hardly any pain after. However, I woke up while they were wheeling me up from surgery because the catheter that they had put in was hurting me. I insisted that they take it out because it was burning, and eventually they relented. I got myself to the bathroom although I was still incredibly dizzy and disoriented and peed on my own, much to the amazement of everyone. I was in some pain after the surgery, but I don't really remember it. By the time my head was right, I was already feeling better than I had before the surgery, which I think is amazing.

I did pretty well while I was in the hospital, although my emotions were like a roller coaster. The first time I saw the stoma, I had a panic attack and couldn't stop crying. For the most part though, I kept my emotions in check because I had family and friends around ALL OF THE TIME and I didn't want to upset them. The biggest physical surprise for me was that there was still output and cramping coming from my colon. No one had warned me about that.

I was in the hospital for only about five days after surgery, and then I decided to go home. I wasn't really emotionally ready, but I felt physically ready, so I made myself do it.

I got progressively better for about a week, then I started having cramping from my colon but no output from my bum (the stoma was working like a charm). After about three days of that, I was in extreme pain from the cramping and I was throwing up. I ended up in the ER, then I spent one night in the hospital. I had a lot of output from my colon that night, which hurt, but was manageable with pain meds. My surgeon said that I was dehydrated, and that things like this just happened some times. He told me that I could spend another night in the hospital, but I decided to go home.

I didn't really have any pain for about five days, but I was horribly weak. I got a bad cold, which took all of the remaining strength right out of me. Then the cramping started again. After about three days, it became intolerable again and I had to go back to the ER, where I continued to have cramping and vomiting until I was back on pain meds and anti-nausea drugs. The pain was horrible. I was in the hospital for three nights this time, and while I was there I had a ton of out-put, including poo (not just mucus and blood) from my colon.

After my first night in the hospital, my surgeons partner came to check on me (he was the one on call). He basically told me that if I was back in the ER again one more time then I would have to have my colon out. He told me that it was obviously too diseased to keep. I reminded him that it hadn't even been three weeks since my surgery and I said that I wanted to wait a while before I made that decision. He thought that I was wrong to wait, but he said that it was ultimately my decision unless an emergency happened, which he is pretty sure it eventually will. He was defiantly not hopeful that I would keep my colon for long. I was pretty miserable after talking to him.

On the second day however, my surgeon came to check on me and he had a completely different view. He said that what was happening was that because I was so impacted before the surgery, the light prep he had me do hadn't really done anything (which I knew), and as a result, I still had a lot of poo in my colon that still needed to come out. He said that he had underestimated how much disease I had had in my colon, but even if he had known, I was probably too impacted for it to have helped any way. He thinks that once all of the old poo is out, this pattern will stop happening. This was a lot better news than what his partner had said.

I got out of the hospital today, and I am finally starting to feel like myself again. I have been pretty depressed off and on since the surgery, but I feel like that cloud is lifting. I feel like I could handle living with the bag forever if I have to, although I am not ready to make that decision.

I'll write more soon, but basically that is the bare bone facts of what has happened. Thank you all for your continued support. Above all, I do not regret my decision to get the surgery, as it has made my life bearable again. Even with the two hospital stays, I can already tell how much less pain I am in than before the surgery. I feel a million times better.
 

Crohn's 35

Inactive Account
Yay Nicole! So happy that you are thinking positively and coping. Things will get better, and I commend you for being such a trooper. Glad the surgeon figured it out. Rest , because you heal when you are sleeping and resting. Hang in there and keep us posted.!!!
 

Nyx

Moderator
That's awesome Nicole! I wasn't warned about the activity that would happen from my anus afterwards either! But I didn't have as hard a time with it as you did (I guess they cleaned me up pretty good during surgery since I was totally impacted and the poo was everywhere...ick! lol).

I'm so happy you're doing better and that your stoma is working well. You'll get used to it :)
 
Wow, Nicole! you've been through so much since your surgery, but am so glad you are able to have a positive outlook, even when you do have the occasional bad day (that is normal!). I'm so glad to hear that you can tell the difference in your pain, which is great! Take the time you need to recover and don't get down if it takes your body longer than expected to feel "normal." You've been through a lot, not only the surgery, but before that too! Take good care of yourself and let that fiance help you out too! :) So glad to finally hear how it all went. Hope to hear from you soon!
 
I'm sorry so much has happened and your surgeons partner needs to be told to get a hold of himself. Talking to a patient like that is just useless. I hope and pray you can get the rest of the stool out of you soon so you can feel better. Thanks for all the help you have given to me. I'm sending prayers to you.
 

Astra

Moderator
Here's to a speedy recovery Nicole!
Your positivity is admirable, hope it all works out for you
xxx
 
Hi Nicole,
Thanks for your posting in my thread. I thought I'd find your thread and see how you're doing. I'm sorry you had such a tough time right after surgery, but I know the feeling.
Did they remove anything or just create the stoma? What brand bag are you using and how is it working for you?

I ventured out today for the first time to get a mothers day card. When other folks were near, I felt self-conscience about the noises my stoma was making - or might make. I guess I need to get over that, but that is a worry for me when I return to work.

Keep on feeling better!
 
Thank you all for your kind words and thoughts. All of you have been more help through all of this then you will ever know. It's so funny that we, a bunch of strangers, have such a big impact on each others lives. I think for many of us, me included, this is the only place where we can go to meet other people with this disease going through similar things. I have never met another person in real life with Crohns. It's really wonderful that we have this site.

So it is a little over three weeks after surgery and I am doing great. I have had NO CROHNS SYMPTOMS WHAT-SO-EVER since the procedure. I am not exaggerating. I had a lot of cramping and I have had to go back to the hospital a few times, but that was from impacted poo left over from before the surgery. Now that all of that has left my system (or at least I'm pretty sure it has), life is wonderful. I am still a little tired and worn out, but it is nothing com paired to before the surgery. Before I had this done, I had gotten to the point where life wasn't worth living any more. That is not being dramatic. I couldn't eat or sleep or do anthing but spend day and night cramped up on the toilet with nothing coming out. The pain was unbearable. For months before it got to that extreme, I wasn't able to leave the house and i was in the ER all of the time. For 13 years before that, I had horrible symptoms on and off, and mild symptoms when I wasn't in a horrible state. I had never been in a real remission in my whole life.

I have accomplished a lot with this disease, although it has always been a challenge. I can't wait to see what I can do symptom free! I feel like the world is opening up to me!

My biggest challenge throughout this ordeal has been pretty bad depression that has reared it's ugly head from time to time. I think that that has partially had to do with body image issues, and partially to do with being exhausted and having to tapper off of pain meds (I truly truly love pain meds, which is a pretty good reason to go off of them ASAP!).

The best thing (besides the feeling of over all health that I am getting now that I am almost recovered from surgery) has been all of the support I have gotten from my loved ones.

The biggest hurdle for me to over come was my fear of intimacy after this. I am happy to say, that everything is getting back to normal in that area. I just wear a little corset-y thing that I got from target that keeps the bag close to my body, and everything works just the way it did before surgery. I thought that we would have to give up some of our favorite positions (mine being missionary for the closeness it provides), but with the corset, everything works just the way it did before. :)

Having this done has been my worst fear my whole life. I thought that I would feel like less of a woman. Actually, it has been the best decision I have ever made. Not having to run to the bathroom after eating, not cramping up wherever I go, missing out on so many things in life; all things I'm not going to miss. Even sex is better, not having to worry about having to go during the deed. That feeling was always so awful and embarrassing.

I feel better and better about this every day. For anyone that has to go through this, I have to say, that if you have dealt with severe crohns for many years, you are not going to be disappointed with the outcome of the surgery. I only wish I had done it sooner.

One thing I will recommend is a site called "ostomysecrets" at www.ostomyshop.com. They have these wonderful belts that you can wear under your clothes to keep your bag nice and flat and keep it from running down your leg. They are wonderful. I am able to wear normal clothes again because of these belts. They are really wonderful.

Hope all of you are well. I'll continue to keep you posted. Thanks again for all of your support. :)
 
Hi CDDad! I think you and I were posting on mu site at the same time! :)

I haven't had anything removed yet, but my colon is cut off from my small intestine. It looks like they are probably going to do a full colectomy in the future, but my surgeon didn't think I was ready to make that decision yet when I had the procedure done. I think he was right at the time, but I do think that is where I will end up considering the state of my colon and rectum.

I use Holister bags, code number 88800. Now that I have gotten used to putting the bag on over the stoma, I have the flesh colored bags rather than the clear ones. It actually helps me mentally not to have to look at the poo floating around all of the time. It makes me feel much more normal. I also don't like to look at the stoma, although it has shrunk considerably since the surgery.

The bags are working really really well. Even with showering and bathing, I haven't had many problems. I shower or bath every day and I change my bag every two to three days. The only problem I had was the last time I was in the hospital it started to leak a little from the filter. I think that I had used the same bag for about four days. The leaking wasn't bad, but any leaking is no fun. I also had a small problem where it looked like some poo was leaking on to my skin once under the ring, but other than that I have had no problems or leaking in the whole three + weeks I have had this. I also haven't had any skin reactions and my stoma is healing pretty well.

I have had little noise form the stoma which is nice. It has made a few noises from time to time, but luckily just in front of family. I have ventured out a few times now which has given me a little anxiety, but has always been fine. I did have to empty my bag in public once in a movie theater and once at a Target which wasn't fun and took forever, but was doable. Every little hurdle makes me feel more confident.

How about you? Any problems? I hope you are well.
 
So glad you are doing so well Nicole! It sounds like you are adjusting to your new life really well and have a great outlook. I'm so proud and happy for you :) You should post your story in the success story thread for people to know you went from a terrible situation to a great one! So many people are looking for proof that people can persevere through the bad stuff and I think you are a shining example of that! Hope your recovery continues to go well.
 
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