Welcome. I'm so sorry that she's been going through that.

It's not an easy decision, but I think that realizing she doesn't have many options left should make the idea of surgery a little more palatable.

One reason he docs have been suggesting it is likely due to the higher risk of cancer with prolonged disease, especially of the colon. 

Several months before my own surgery, I was symptomatically in remission, but my scope results and lab work told a very different story. Had I delayed the surgery long since I was feeling OK, it wouldn't have given me a very positive long-term outlook. 

I do hope she has a bright future free of all the stress and worry that comes along with being so I'll for so long. 

Hi and welcome to the forum. I totally see where you are coming from. I struggled with crohns in my early 20s and had my op at 25. For me every thing just crashed and I was an emergency. I had struggled with the concept of bag. But soon came to see as a better life. From a point of a bag wearer when young, it never held me back. The feeling of not being ill and more energy was great. Best wishes going forward 👍

@momof2

Hello,

I am so sorry to hear of your daughter's struggle with Crohn's. I know it's a horrible disease, because my youngest brother had to deal with it. 

Even though I have an end Sigmoid colostomy, I had to face a similar decision of having a permanent ostomy when I wasn't feeling badly. I had colorectal cancer and had to have my rectum and anus removed. It was a reality that hit me squarely in the face, but I needed to have it addressed. The prognosis would not have good for me otherwise. 

Sometimes, we have to make  a decision that is not easy but is the right thing to do. In order to save my life, I chose a permanent colostomy - it's a decision I have never regretted. 

This forum has been a huge help for me and for many who come here. Maybe you could encourage your daughter to check us out. We are here to support her and give her any info that may ease her fears. Ultimately, though the decision to have an ileostomy is totally your daughter's to make. 

God bless,

Stella

I will echo what Stella has said. I also had my anus and rectum removed because of cancer. I was so depressed when I learned that I would be having this surgery, but if I hadn’t, I wouldn’t be here. I have never suffered from Crohns or colitis, so I can’t speak to that experience, but I hear from a lot of people on this site that their lives are much easier since their surgery. I won’t minimize how difficult the decision to have the surgery is, but Stella is right - maybe we could help your daughter come to terms with it. We have, every one of us, been there. So glad you found us - this is a site full of people who want to help. 

Laurie

Thanks for the replies everyone!  It really helps.  Especially @Veganostomy because it sounds like maybe you were in a similar boat.  

They have warned her of her extraordinarily high risk of colon or rectal cancer given the 6 straight years of massive inflammation.  She says, if the scope and find cancer then it makes the decision easier for her.  Or if she was admitted with one of her patented massive flares, then the decision is easy. However, for her she is doing the best she has in a really long time so she just can't figure out how the surgery will lead to a better QOL. 

Of course, she has probably felt like crap for so so long that she has no recollection of what normal and good is like and maybe this "good" she is feeling now is still marginal at best.  But try to tell a 22 year old who doesn't want to take time off from school this.  

She had come to terms with the surgery and accepted a permanent ostomy but then the day before her surgery her GI said, "you aren't that sick so let's try Tofa".  So she put it out of her mind and now it is back.  Plus, she really only had time in her schedule in December.  Now she goes to school straight through to December and is saying that she doesn't have time to devote to surgery.  

We will see what happens at the scopes in mid April.  Maybe the decision will be taken out of her hands.  

One other logistical question.  She goes to school where there are literally no IBD GI's or cold rectal surgeons.  She would have to travel 2 hours to the nearest city.  We figured if she is traveling, mine as well go to Cleveland Clinic where they do thousands of these surgeries a year.  It is a two hour flight so not that bad but how often did you see your surgeon after the surgery?  We are planning to stay local for the first two weeks post op but what about after that?  

I am definitely going to encourage her to poke around here and join.  You guys have been wonderful! 

Posted by: @momof2

However, for her she is doing the best she has in a really long time so she just can't figure out how the surgery will lead to a better QOL. 

I did write an article that might be helpful HERE. 

Her doctors know better than anyone what her future could look like if things remain as they are. Even if her illness is well managed from this point on, her doctors have indicated that cancer is a high risk, which is something to consider. 

The fact that she's going to school certainly does complicate things a little, but IBD often affects young people, and I have many friends who were diagnosed while they were still in school. That doesn't make it easier, but it does show that there's a wider community out there if she needs support. 

Posted by: @momof2

We will see what happens at the scopes in mid April.  Maybe the decision will be taken out of her hands.  

This may very well be true. I do personally feel that it's "easier" to do the surgery when you've had time to plan, and it's on your own terms vs. having a sudden or emergency surgery put upon you. 

I can't expect anyone to simply drop everything to plan for their surgery, so I do empathize with what she's going through. 

Posted by: @momof2

We figured if she is traveling, mine as well go to Cleveland Clinic where they do thousands of these surgeries a year.  It is a two hour flight so not that bad but how often did you see your surgeon after the surgery?

Cleveland Clinic would be an excellent place. They are one of the top IBD hospitals in the US. 

I had two surgeries: one to remove the colon and the second to remove the rectum and anus. I believe the first only required one follow up with my surgeon, about 4-6 weeks after the surgery. 

I did have complications with my wound healing on the second surgery, which did require a few follow-ups, but I was also on a wound vac, so it wasn't as "easy" as being sewn up. 

Please, let us know if you have any other questions that might help her.👍

Momof2... hello and welcome to VO.  I know I'm a tad late on the scene but I've been reading along. 

At the time of my surgery almost 13 years ago I was actually questioning if it was as necessary as it felt it was when I was in a bout of severe illness or a basic attack.  There is a difference.  All I can say is that if the surgery had happened 20 years earlier I would still be a very happy camper today.  

I kind of think that having surgery when you are feeling better gives you an outcome that I thought was more desirable.  Possibly easier to recover from because you go into it feeling better in the 1st place. These cranky diseases may settle down for a time but they are always there & will always come back to greet you in the butt!!! Literally.  I can honestly say...I've never looked back! lol!

I can understand the Doctor suggesting another medication but maybe encourage her not to be a guinea pig of sorts either.  There does come a time when enough is enough and as said her Quality Of Life MATTERS here as well. 

Also, her age likely has something to do with the suggestion of this new medication as she is young and in school so maybe this is the medication that works...but then maybe it isn't either.  I think some Doctors want to know 2 things.  How much can you tolerate before you've had enough to really appreciate the outcome of an ostomy & will gratefulness of wearing a plastic bag off your tummy for the rest of your life still be there a month down the road?Lady to Lady here ... my hubby died a few short months after my Ostomy.   I remember asking  a friend who suggested I get married again 2 years down the road... " AND JUST WHO is going to want to marry me with a bag or you know what hanging from my gut!?? "    May I suggest, if this has been an avoided topic with your  daughter,  maybe talk about it with her.   Eric has Excellent videos & one regarding a more personal life for Ostomates as well as clothing choices. 

I'm pretty sure we all hoped at one point that there was a magic remedy for what ails us but how realistic is that when a future and possible cancer diagnoses hangs in the balance.  

Since my Ostomy I can honestly say that even with some of the challenges I've faced,  lol,  I have never regretted signing that paper. 

I wish your daughters ALL THE BEST and I hope she knows how fortunate she is to have an advocate like you on her side. Don't be a stranger here. No question is a dumb or embarassing question! 

I have to add more of my own two cents. I certainly agree with everyone's comments here. Cancer is no joke. I would hate to see your daughter have to go through it. The ultimate decision does lie with her, but I know what it's like to put off to tomorrow what should be done today. As I mentioned before, I have no regrets becoming an ostomate. I was offered experimental chemo cocktails before my surgery, but after a great deal of research, I realized that I would have a better chance of survival if I just had everything taken out and continued living as an ostomate.

I realize, that as a young woman, your daughter may have deep concerns about her body image. I understand, because even as an older woman, I was concerned about how my husband would view my new body. However, it makes no difference to him. He still sees me as the beautiful woman he married and still considers me to be "sexy". (BTW, he does wear glasses! 🤣) Anyone who truly loves you won't be bothered by a bag hanging off your abdomen. 

Just adding more of my thoughts because I care.

Stella

OMGosh!  You are all so so kind.I hope I am tagging you properly.   

@veganostomy that article helped thank-you 

@LK  and @sjlovestosing - where might I find these videos?  For sure body image and the concern over dating etc is at play here.  She is not currently in a relationship so she wonders.  

She met with the GI today.  He wanted to meet with her now because he truly believes that the colonoscopy will reveal severe inflammation and that his suggestion will be surgery.  He wanted to talk it over with her in depth now so she has a chance to process it rather than spring it on her when she is coming to after colonoscopy.  He was very kind and compassionate.  

She totally understands that her health has to be her priority.  She knows surgery is the right next step.  She just feels it happened too fast (although it has been two years of discussing it now).  

Now she just has to decide if she is going to take the chance and wait until December, take an incomplete in this semester and have it right after scopes (assuming the professors let her miss the last two weeks of instruction and let her "make up" the finals and her clinical work), or schedule the surgery for May or June and just go ahead and take the year off from school.  

The issue is she is in a cohort program and classes are only offered once a year.  The program runs year round except for a month off in December.  

Waiting until December runs the risk of a massive flare, sudden and more difficult surgery and having to drop out mid semester, lose tuition and all the work and have to take a year off.  But if she could last, perfect timing.  

Deciding up front to take the year off and have surgery in May or June.  Gives her time to come to terms with the surgery, no pressure with missed classes and having to make anything up.   But hard to rejoin after a year absence and once recovered what to do with all that time! 

April takes risk of flare away, no year off, but pressure with missed instruction and make up exams only 3.5 weeks post op.  

Her pediatric GI is concerned about the stress and trauma of a rushed decision for April surgery.  However, I think he is discounting the trauma she has already been through.  The many, many treatments that she has pinned hope on only to be let down, the repeated admissions, the flare and surgery constantly hanging over her head, the pushing through every day for the past 6 years. Plus postponing doesn't guarantee there will be no more trauma because what if she flares! It just might be time for her to take the little bit of control that she could have over this beast.  

God bless you all!  You don't have to be here.  Usually it is the people experiencing problems who you find online.  The voices of those who have gotten through and are enjoying life on the other side is so very important and I appreciate the time you are spending informing and encouraging others.  Your voices are invaluable!  I really hope she decides to join you all when she is ready.  

Momof2,

Since my English is not very good, and if I misunderstood you, please forgive me.

Here, I just want to share my life experience.

When I was 20, I really couldn't see my future. So I just studied hard and worked hard. Got all my certificates that may help for a bright career. I didn't care about sleeping nor anything that may help to health. At that time I always have constipation. I thought it's only because due to not enough sleep. But still, study and working was the most important. Second is to find a good boyfriend to have a happy home.

When I was around 40, I saw blood on my stools. My family doctor advised me many times to go check with colonoscopy. At that time, together with scare and worry, I still think job is most important.

At 57, ok, blood is very obvious, finally agree to go for colonoscopy,  diagnosed with pre cancer. Still lucky, cut off 1/3 of my colon. Two months later, went back to work.

2019, feel pain from abdomen, this time colonoscopy showed stage 2-3 rectum cancer. Had surgery cut off part of rectum and another 1/3 of colon. Had radiation and chemotherapy.

Yesterday, went for colonoscopy again. Waiting for CT to determine things. Blood work did show no more tumor. Blood came after colonoscopy and still having.

My point : where was my dream to have a bright career based on all my study and hard working. Where is my dream family. I had a boyfriend. and no more now. I'm really just all by myself. My mom is old now and I don't want to stress her.

I dared not take this as an advice for all the young. I understand all young because I have been young, especially the good ones, all have ambitious for life. But I do regret now for all my ambitious that I had when I was 20. Why I didn't take things easy, relax and listen to what my body wanted. Who know if I didn't studied for those so called certificates, I cannot have a job that I like and who know I cannot make money on it. Who know if I didn't take so serious, I may laugh more and may have built up a happy home with a caring father for some happy kids.

God Bless

@stella wow, Stella. There is so much wisdom in what you have said. Thanks for sharing.

Laurie

@stella ... Thank you Stella for sharing, you've been thru a lot!  Regrets of the past are learned from is what matters & are worth sharing. 

@momof2 ... Heloo again...Yes, I think your daughter may benefit from knowing ahead of time some of this info here &  I sure wish I had known much of what I learned here before my surgery.  It would have made many issues so much easier to deal with. Also just knowing I had the help & support of  the people here would have been fabulous from the start of my surgery.  

To see Videos, if your on your phone as I am... go to the top  & click on the top Right 3 bars. A drop down window will open & down the list is "Videos." Click on Videos. It'll bring you to the list of Videos Eric has ever so kindly made for us to learn from & help with. 

Maybe make sure you see the one on Clothing options & styles & even for in the bedroom. Eric made these "Lady concerns"  videos with the help of lovely young ladies also in the video.  There's also a series of 3,  I think, for day time and swim wear clothing options for ladies with photos donated by Ostomates, young & mature ladies.  These were very helpful because some of us had to change our clothing choices a little to work better with our pouch & disguise it a little. 

For me, as a new Ostomate there were 2 things I was very aware of.  On asking those I trusted I was told No, there's no odor. I felt I always had a stink about me.  I joke now that I have my dog to tell me of I stink or not! . Thankfully my dogs & his/ her  trusty noses have always bern the 1st to let me know if theres a leak.  You'll  see that Eric has a great list of topics that concern Ostomates.  I binge watched them when I 1st stumbled on this site! Thank you again Eric for all you work!  .

I'm going to give you a list & some phone numbers of supplies your daughter may find helpful for confidently wearing a pouch. My huge concern was security of it on me & trusting it to stay put! So... If you wish... call the 2 companies & they'll  ask for some info. Its great for feedback & I think It helps keep track of products she'll use or try that worked or not for her. You can also view then on the website. They can answer many questions about products  but her Stoma Nurse or Doctors are for medical issues.  We Can help with encouragement & to give tips on  issues we've tried &  use  resolve  issues until we can get to the stoma nurse. Here, No question is a dumb question. It was hard for me to deal with what I felt were embarrassing issues at 1st,  but the people here, they just really helped me feel I was not alone & like I had a group of friends & support no one else could give me here no matter what I'm going through.  If we want to tell or discuss something not so stoma related we can post under the "Lounge" forum & get replies & support there too. The folks here are all pretty awesome, friendly & very  respectful. 

An Example of supplies...  to help me feel like my pouch has a secure hold on my tummy,  I use a   C -  Shaped soft elastic tape to put around the edge of the tape & wafer on my tummy &  pouch.  I take showers, long Baths & go swimming & even in a hottub when I have a chance with my pouch on.  An Ostomy can feel overwhelming when  your new to it but its not the end of fun activities.   As patients we usually leave the hospital with some supplies but you'll need to gather them from the pharmacy or dealer your insurance supports soon after shes home from her surgery. 

Encourage her to keep a journal at the hospital of questions to ask the surgeon & nurses. She can write down the replies while they are there or while she remembers.  A journal is helpful because the anesthetic & medications can leave one feeling rather sleepy brained for a day or two after surgery.  NO one should criticize  her for being thorough as things can be overwhelming at 1st. Also a journal is a great way to figure out product,  skin & food issues should any develope down the road. 

You may want to ask the surgeon what her stoma will be like.  Be POLITELY BOLD in talking about these things with Doctors.  She has a right to as trouble free a life after surgery as can be. I'm finding that some folks  here that have a flush or nearly flush stoma have a lot of leaks to deal with.  Mine from start has been a good 3/4 to 1 1/2 inch in length & I don't get nearly as many leaks as those with nearly flush stomas.  I think its because the natural fluids a stoma makes don't get beneath the edge of the pouches wafer as readily as that of one sitting at the edge of the wafer.  Mine goes down from the wafer missing the edge almost completely.  The wafer is a soft brown flexible material that sits on our tummies along with a cloth like tape around it. 

Heres a few things she will & may need to make life a little easier with an Ostomy. Feel free to call the  companies and ask for samples. They're very good about sending them plus She's going to be a customer for life so they shouldn't have an issue with it. Lolol! .

Hollister... 1-800-263-7400  or  1-844-466-3939

Coloplast... 1-888-880-8605

If your in Canada & depending on what your medical covers or not there is  a place I've found that delivers the next day or 2 on average....also much cheaper then my pharmacy charges for some products like the M9 and Osto E Z Vents.

Payless... 1-866-533-0772  if I remember right they are in the USA also. But it doesn't hurt to ask. 

1)   Hollister...You may want to ask if they have a starter kit & a zipper bag that will hold her supplies to keep them handy in her backpack for when she's in school again. A welcome to your Ostomy life sort of thing for newbies. Coloplast sent me a lovely zippered bag thats big enough to hold my supplies. It would fit well in a backpack. I needed a smaller one for my purse though. 

2) The use of a purse size cosmetic mirror is good to have so she can check the skin under her stoma each time she changes her pouch. There is a video on this also.  Keeping the skin beneath the wafer as healthy as possible will be very important. 

3)  She may find using a combo of Adhesive Remover Spray & Wipes easier then just the wipes & the same with the Skin Barrier Spray & Wipes.  She'll need both these products, but the forms she  chooses will be something she'll figure out as she goes. Ask for samples of the sprays too. 

4)  They'll send samples of a C-Shaped soft elastic tape that fits nicely around the edge of the tapes on the pouch. Size small is what I use. They do make a large size also but it was too big for my needs.  These tapes made me feel like my pouch was even more securely on my skin then it was allowing me to do my flower  & veggies gardens, go camping in my tent,  grooming & playing with my dogs on the floor. 

5)  Hollister makes a liquid Deodorant to put in the pouch to eliminate odour. As a new Ostomate she may ask if she stinks.  I think its because now our output is pretty much under our noses so we are more sensitive & aware of it. Using this deoderant gave me the confidence to know I did not stink. Plus I have a dog & she's usually the 1st to let me know it there's a leak of some kind. Dogs will smell me for hospital smells  & wounds healing.  

6)  If pancaking of output (poop) is an issue there's the lubricating deodorant the Coloplast makes to put in the bag. I sometimes use the M9 & this one in combo. Keeping well hydrated prevent this issue for me. 

7)  she'll need a pair of round nosed scissors for cutting her wafer,  see Erics video, to the right size for her stoma. Some can be a funny shape for a while but once swelling settles it'll be easier to get along with. Its important to measure her stoma each time she changes her pouch. The nurses in the Hospital or a stoma nurse should guide her on this matter also.  These scissors also help prevent cutting thru the actual pouch walls. Coloplast or Hollister sent me my 1st pair as a sample. 

8)  I save the new plastic I peel off the back of the pouch on my tummy to help measure the stoma. (Pouches come in a box of 10.) Its great for tracing the hole on the next pouch also.

9)  Hollister makes an Odor Eliminator Spray for in the bathroom if she feels she needs that but I find I use it mire for when my new puppy has an accident. Lol! They sent me a sample when I requested it. 

10)  Osto E Z Vents... this little vent has been the best thing if you ask me! Lol! I have short gut syndrome & create a lot of gas. Releasing the air before the vent meant it had to lay on my bed,  undo the mouth of the pouch where we drain our output from, gently let the air out, roll it up & close the velcro end again, wash my hands & away I go. I had to do this as often as 10 times an hour some days. It was annoying if I went somewhere because I couldn't eat before I left the house.  Now, I just step outside or to the bathroom & open the vent, let the air out, close it & wash my hands or use  hand sanitizer. Quick & easy.   We do have to apply the vents to the pouch ourselves but through trial & error I have fine tuned the companies  "butt saving" instructions into a much quicker & easier process! Lololol!!  I'll share those instructions anytime. Just ask.   I but the vents from the Payless company above.  

I hope this wasn't too much info. but these are things I really wish I  had known going into surgery. I wish you all the best going forward & especially for your daughters. If she wishes she can ask questions here too or start her own forum. Hang in there Momma your doing well coming here!! 

Hi gang!  

She had her surgery on Wednesday!  She is doing great physically and mentally.  It almost seems like a relief that she is on the other side of this thing.  

They decided to try just a diverting loop ileostomy and treat the colon with the latest and greatest upadacitinib.  This way her colon rests and gives the drug the best shot at working and we don't have to always wonder, "what if upa would have worked".  

We will reevaluate in I think December.  If the colon/rectum are still in bad shape then she moves forward with total proctocolectomy and makes the ileostomy permanent.  Depending on which segments heal, maybe a j-pouch.  

They did an MRI prior to surgery and said that her sigmoid is already getting dilated so the surgery is definitely the right thing to do.  

Waiting for stoma education and then she might be discharged tomorrow to a local hotel and we will stick around for a couple of weeks for follow up appointments.  

She might be on here soon to introduce herself.  She already has a question about the noises coming from the stoma/bag.  

That’s really great news, The stoma will be swollen and passing all manner of unpleasant output and yep making a lot of noise. This will settle so don’t be alarmed 😱. Ask plenty and remember it may take a few appliances to find what suits. Order free samples and the very best wishes for a great recovery 👍

@john68 Thanks!  Yeah, we already went on one of the sites to order a bunch of free samples and promptly got overwhelmed by all the choices 🤣 We decided to wait for the stoma nurse to give us at least a good starting place.  

Keep it simple wafer/bag. The other bits and bobs are useful as the need arises. Has the stoma a good length.

@momof2 All good wishes to you and your daughter! There is a lot of information out there and a lot of choices. The stoma nurse will be of great help, and can also simplify things.

Great to hear that, momof2. Wishing your daughter recovers very soon. She will be fine with such a great mom besides her to help and comfort.

At the beginning she may not know what to do. She may take it bit by bit. First just learn how to empty the bag. Then how to change. She will be able to do it very soon. I have a feeling that she learn things very quick. (Eric's information on this site is super great. And all the experiences knowledge from everyone in this family are very helpful. We are one family here. Just post any questions here and all who know will jump in to help.)

Soon, your daughter may see the little stoma as a cute little baby or little sister. I always feel my little baby stoma wants to talk to me when she makes some little sound (e.g. when she makes a bubble and give a pop sound. Its the gas from inside).

At this stage, right after surgery, pay some attention to diet. I didn't eat fiber, no seed, no nut, no skin things to avoid blockage. I think the hospital will give her instructions on this.

Your daughter will be able to do it very good. Just a new life experience. Who know why we need this experience. May be it's preparing us to do much greater things on our life journey in the future and not just as a photocopy of all the traditional life experiences of all others.