Crohn's disease diagnosed in 1974 at 13 years of age. First surgery at 18 removed entire colon, rectum and 3 ½ ft of small intestine resulting in an ileostomy. Multiple surgeries since, with only 4-5 ft of small intestine remaining at this time. What remains is in bad shape with two severe fibrotic strictures. Very painful. Any further surgery would likely put me on TPN, which I've been fighting to avoid with anti-motility meds and pain management. Silver lining - My hubby of 21 years is the kindest man in the world and my hero, and our 18 year old son is a constant source of pride and joy for both of us.
elcome prayin4healing :
I am 41years old male with crohns since age 13 and had my ileostomy surgery in 1997 do to perianal fistula’s I just went back to my Doc to see about a reversal as my case back 10 years ago they would not consider one…things are better now a days and have come along way with new meds like you were on that may allow me to choose a reversal.
You most likely will have an ileostomy that will disconnect your colon so it will help dry up the fistulas and make them dormant my Doc said they will never go away but just not active (this is my greatest concern in getting reversed).
I at age 31 was not willing in my mind to go to a iliostomy and I had all the same thoughts that you have.
Let me address what my thoughts are for your questions.
How long is the hospital stay?
My stay at John Hopkins was 10 days, but may very for individuals.Does it hurt?
(I take it you meant the surgery)
It only hurt when I left the Hostpital (I was on morphine 9 days) discharged July 4th 1997,
The next day my wife and mom went to fill a prescription for Oxicodone and I started on one but it was no match for the morphine I was on so I took two and it help mange pain but was no match again but stayed at two pills.
I had Home Care Nursing (prior to surgery) with my fistula packing and they stayed with me after discharge it was the best thing and if your insurance will allow I recommend it. Does it smell?
(for the most part no it does not smell, but you play a big part in making that so) Only when the stoma wafer is ready to be removed and a new one put on does it put off a odor that you will smell first before others (they last 3 days for most brands) this is a sticky back wafer that will fit over your stoma.
Mine is a two piece application were the wafer and bag snap together like Tupperware, this makes it easy to release air as you can burp it…I joke with close friends and say I will save all my gas and let it out once. sorry its a guy thing.
The other is one piece and you will most likely have that after you wake up from surgery and when you come home, but a ostomey nurse will cover all the different types to you so you can buy what you want after you leave the hospital. They will send you home with a small supply that should last you a week.
Is it really noticeable?
(I take it you meant “is the bag noticeable in public.(NO) Its never been noticeable problem for me and have co workers for ten years that still don’t know (except swimming in public more hang up for me than anything but I have gone and will go).
You may have a mucus stoma and this is you large intestine/Colon,you will put 4x4 gauze and tape over this as it produces a clear natural fluid from your large intestine it will be located above you wafer stoma that is at/around your belt line. Most people will see this if swimming in a bikini but not a one piece (I don’t have that option it would look funny .
My home nurses before surgery all said you don’t see it and they were right they
also said that it does not stop you from doing anything you want to do as far as activity.
True to that I camp,swim, hike,wresltle with oldest son work on jeeps and go four wheeling,coached baseball and football with out issue.
No one will know unless you tell them.Can you chose where your stoma is placed?
(NO) your Ostomey Nurse will decide and then the Surgeon will check the location and concur with the ostomy nurse (the ostomy nurse is a specialized nurse that will work with you on what to expect/how you feel about it and how to take care of it use her to ask about you fears and anxieties.
Hope this helps feel free to ask anything we all have had dinner discussions at the table.
Post Edited (MDdave) : 12/28/2007 8:51:40 PM (GMT-7)
I have tried no meds at all since 1997 as I have had no fistulas or crohns activity.
You said your doc said they would close on there own with remicade and humira he is right but the key word is close not go away.
my doc explained that they will be closed and stay in active/dried up in 1/3 of people using remicade and humira but never go away.
My doc is the head of Meyerhof Gastro wing at JHU he is world renowned teaching doctor of IBD and Crohns.
After my surgery I had 9 doctors (all on leave from their practice for training) around my bed and my doc was the teacher for the other doc's (Theodore Bayles is my doc goggle him) NJ is not far from Baltimore JHU if you could get there I would recommend it.
I'm not sure of the mesh plug did he mention a seaton that is a rubber band that help keep the fistula from closing and lets it drain. Supplies are expensive with out insurance each wafer cost 5-6$ and come in box of 5 and box of 10 and like I said you use one every 3 days. I use ConvaTec brand for 10 years…their factory is in Princeton NJ look them up online.
Side note, there are places that take donated medical supplies from people who
no longer have a need for them and these places will be able to help you out
if you have no insurance, look around online for a place that does this in your area and
hook up with them.
I read a article years back were a lady had no insurance and she was with out
any supplies so she had sat in her tub do to be with out…a charity ostomey supply
group came to her aid.
Post Edited (MDdave) : 12/29/2007 11:30:11 AM (GMT-7)
Hello, this is Kitt. Remember each person's experience is different. I am going to post the link to Convatec. Thiis a company dedicated to wound and skin care. It is a great web site as it answers many questions re ostomies and the care of your ostomy. I am familiar with their product as this is what we used at our hospital for our ostomy patients.
I am not promoting the sale of their product as better than anyones just feel you may learn some answers to your questions.
This company also has a nursing division that actually provides education to patients and help in choosing your products post op. Your hospital will have a ostomy nurse see you so rest assured you will receive instructions.
I know how afraid you are, I want you to be sure and write down all your questions to ask about the ostomy so when the time comes it will be easy for you to remember your biggest concerns.
My email is posted if you need it. :)
You wrote: Due to my perianal fistulas and hospitalizations I have used all of my FMLA time and am currently awaiting termination from my job. In which case I will lose my insurance.
Here is the site that may help you understand your rights re insurance:
Post Edited (stkitt) : 12/29/2007 1:05:34 PM (GMT-7)
It is ok to be scared, your human. Just keep remembering that many people are praying for you and we will be here after your surgery too, so take our hand and we will be right beside you in spirit. Let the tears out as I am sure you have some. It helps to let out your feelings.
You belong to the HW family now............you are not alone in this.
Many Gentle Hugs,
Just read your post,and wondering how your'e doing?
Hang in there,I know it's easier said than done!! Here's my deal,since being on Imuran for over a year,I have felt good,but my scopes always look really inflamed,so I'm on Humira,and my next followup scope is this Wednesday,and I'm freaked out,because no matter how I feel,they find something bad about my colon,it's just sooo stressful,isn't it?? So,we have this patient ( I'm a RN,go figure...) who is a little older than you who has an ostomy,she just had her first baby about a year ago,and is doing great,she says it was the best thing she ever did,just thought you could use any success stories we have right now,hope it helps a little. This is a great place to vent,these people here are so supportive of each other,it's amazing
Please keep us posted,we care
ps...this is what I'm going to look like Wednesday when they tell me how bad my colon looks AGAIN