Would you have an ileostomy in my situation?

Hi. I am new to this board, but not to HW, as you can probably tell already from my post count <_<. (I post on the Crohn's board normally.)

I've been putting off posting, as I don't like thinking about this too deeply or for too long. Anyway, here is my background story. I am female, 37 years old, and was diagnosed with Crohn's in 2000. For the first few years, my symptoms were mild and did not interfere with my life. I didn't follow any type of special diet and ate normally. I assumed it would always be like this. I was wrong. I fell ill in 2005 with a flare-up that was characterised by debilitating fevers. Ever since then, I have been varying degrees of unwell. I did not respond to medication, so I learnt to reduce my symptoms by restricting food.

The last couple of years have been particularly bad. I was hospitalised a couple of times late last year and again this January. I was found to have a stricture in the terminal ileum which was causing partial obstructions. I have also been on Remicade since September of last year. When I was in hospital in January, I spoke to my consultant about surgery. The prognosis was gloomy. As I had Crohn's throughout the entire colon, as well as in the TI, reconnective surgery wouldn't be possible. I would have to have a permanent ileostomy. A j-pouch wouldn't be possible either.

Long story short, I had an appointment with a colorectal surgeon a couple of weeks ago who basically confirmed everything my consultant had said about surgery. Unlike him, though, she was quite happy to whip out my colon! <_<

What else? Well, I was put onto an elemental diet for six weeks, except I only stuck it out for, uh, two weeks. The drinks were disgusting, I had trouble digesting them (so it felt like), and I was half-starving, since I was unable to drink the recommended amount of cartons a day. On top of that, my mental state changed. It was like being on steroids, except Pred never made me half as crazy as those drinks did.

I'm now back on normal food and suffering my usual symptoms. Strong discomfort, low-level pain and fatigue for many hours after eating, especially in the evenings. I do have diarrhoea in the sense of having liquid stools, but unlike many with Crohn's I have almost the opposite problem of urgency: sometimes my colon seems as though it has become lazy - too lazy to move my digested food. When that happens, I tend towards constipation and it can get bad very quickly, if I am not careful.

The stricture still feels like it's there, but I am not obstructing at the moment. If it is there, that means that Remicade and steroids failed to get rid of it. Which means it's probably scar tissue, which means it won't go away except by means of surgery.

Mentally, I have been in a bad way recently. I have been coping, just about, during the daytime, but in the evenings - when I am fatigued and sometimes running a low-grade temperature - I have been depressed, anxious, agitated and gloomy. Tonight is the first night I have felt almost 'normal' in a while. I doubled my antidepressant last night and ate less today, so both of those might have had something to do with it.

So.... a couple more things. I've got an appointment to see a stoma nurse next week, which the surgeon arranged for me. My consultant is not absolutely dead set against me having surgery, but does not see it as a good thing. My parents - my dad especially - wants to get a second opinion. He did come with me to the surgeon's appointment and asked about the need for 'radical' surgery quite closely. But if he was trying to get her to consent to a less radical surgery (removal of the stricture only), he was doomed to be disappointed. Surgeons won't connect healthy tissue to diseased bowel, that's obvious.

Put simply, I would like to know if you think having an ileostomy in my situation is justified, given certain things. I have Crohn's disease, and its return is apparently a matter of 'when', not 'if'. I cannot have a j-pouch, but must have an external bag. The ileostomy would be irreversible.

Points in favour are that I haven't been well in years and I do not think at this stage that any medical therapy or diet would help. It is mainly my colon which is affected, so if that was removed I would hope to feel better within myself. I would also hope to be able to eat normally again, without fear of obstruction, constipation, fatigue, pain, gurgling. My surgeon said that I would be able to eat everything except celery, mushrooms and sweetcorn (?). Is that true? Can I eat tomatoes, onions, peppers, salad, etc? Also, amount. I'm tired of constantly having to monitor how much I eat. I don't go hungry, exactly, but I often feel like I could eat more but daren't. I'm not talking about eating a literal small mountain, but can you eat normal-sized meals with a stoma?

Points against are it's not an emergency, I would have to have a bag, and things can still go wrong - many things from the looks of it: obstructions at the stoma site, infection, bag blowouts, noisy gas, wounds not healing, etc. It terrifies me, the thought of going through major surgery, and then it not making a difference for the better.

*takes a deep breath* Phew. I'm sure I've forgotten several vital points, but for now my brain has given out on me <_<. Besides which, this post is already long enough! Thanks for reading...

I'm going to address your pros and cons. This is just my opinion, and it is definitely a difficult choice. if you would feel better about making the decision by getting a second surgeons opinion, or third or fourth you should do so.

Pros- You state you feel that you feel nothing else is going to help. this is major indicator to me that you have already made the decision but want reassurance. If you feel you have no quality of life and drugs, diet, whatever are not working and you've lost faith in them, surgery can be a good solution. I thought about surgery shortly before I ended up needing it. In my experience, most people that begin to consider surgery, end up having it because you don't come to the surgery option until you feel you have no other choice.
You CAN eat whatever you want! After the initial healing of course :) I ate more things with my ostomy than i do with my j-pouch. I certainly ate celery, corn, nuts, popcorn, things with skin, even leafy greens! (i can't eat greens with my jpouch, the gas isn't worth it!) You have to test everything slowly, learn what works and what doesn't, and chew a lot more carefully. But you don't have to restrict how much you eat at all. In fact most people afterwards complain that they've gained too much weight because they can finally eat again!

Cons -"It's not an emergency" this is actually a huge pro! Having surgery when you are healthy, not in state of sickness so great you are on pred, and not weak from not eating enough will mean your surgery will be easier on not on the surgeon, but on you as you recover. Going into surgery as an emergency is always risky. My surgery was an emergency. I almost died. My heart almost stopped and still is weak from the stress placed on it. Having surgery healthy(ish) is such a better way to go.
Having the bag isn't awful, you just have to get used to it. If something went wrong with my jpouch, i wouldn't have a problem going back to the ileostomy. Its not ideal, Let's face it, but neither is having 0 quality of life. I had NO life when I was sick all the time. with my ostomy i was out and about and eating everything and meeting new people and it was awesome! I went out dancing 4 months after my emergency surgery! yes it takes some adjusting to your new body, you'll have bad days, but once you have healed and you realize how not sick you are it is totally worth it!
Complications are no worse than complications of active Crohn's and the medications that control it. Every medical issue has complications, you have to choose which ones you are willing to risk. The majority of people experience few or no complications. And the vast majority experience a wonderful difference after having surgery, even with complications. its a numbers game. :)

Since you are not in a situation where you must make a decision now, take your time to weigh your options. try not to scare yourself with the what-ifs because they may never even happen. Focus on how you feel about your QUALITY of life. that should be the deciding factor. Do you think your life would improve with the ostomy or do you think it would be worse? I think 99% of people with ostomies say it has improved their life. Some of them struggled through the first stages, but the end result usually ends up being worth it. Talk to lots of doctors about your situation to find out what makes you feel comfortable. And its normal to be scared. No one wants to be cut open. It is frightening, but don't think about it from that angle. Think about the results.

I wish you the best in your decision making, be well!

I am 36 and had my permanent ileostomy surgery in late November. My surgery was not emergency surgery, but I was not well at all, and I will say that being ill made it FAR more difficult to recover.

I was sick for 14 years, but actually, I was in remission for a very good portion of that time. I was on heavy duty meds, and limitied my diet greatly to stay in remission, but at least I felt good. With that in mind, the ileo has been a bit of an adjustment for me. Initially, I was over the moon just to be able to eat what I like again. For me, the novelty of that has worn off a bit, so the ileo is taking me some getting used to. I would be lying if I were to tell you it is the best thing that ever happened to me.

I was in remission for at most, 5 years, and at least, 2 years throughout the course of my disease, before I started mildly flaring a year and a half before my surgery. I couldn't get it back under full control after that, but It REALLY hit me hard this past October. Then, it was like it took off, and the surgery was done before I could even realize what I was doing. I guess part of me was still in denial; my disease always neatly tucked itself back in and went away every other time.

The postitive side is that it was necessary for me to get; it saved my life. It has not changed much of how I live, except some minor inconveniences. I still look the same, act the same, feel mostly the same (or a better as the days pass) and dress the same. Nothing has really changed for the negative.

I don't want to tell you that you will feel wonderful and everything will be just peachy after all is said and done. For some that is the case right away. For others, there is more of an adjustment, and there is nothing wrong with that. I think it is more harmful to lift you up about the whole thing, and have you down in the dumps feeling lousy because your recovery isn't as blissful, easy, and appreciated as everyone elses.

If the ileostomy will save your life, get it. If it will improve your quality of life, get it. Just remember the old cliche - Rome wasn't built in a day. It may take some time to feel the "great" people speak of, and that is okay.

I totally would! I had surgery, I chose a bag, after 8 wasted years with uc! Got my life back, yay!
I know having a bag sounds awful and gross, but its not, its actually convenient. a friend of mine told me she was jealous said she wants one,lol. You can eat whatever, however I don't eat corn or carrots, just cause I don't like that they come out looking like they went in,lol. Some foods may give you gas but you can learn to deal with that. And you can eat however much you want, I ate a whole pint of ice cream the other night :). You can wear whatever too, don't worry about that. And noone will know its there.
As for your cons, like was said that's its not an emergency is a good thing it will make your recovery easier. And yep, things can go wrong, I actually just had an adhesion surgery, and I still don't regret my surgery! I had 5 pain and drug free years, so a little setback is worth it! Blowouts can happen, however that's usually only at first before you get the hang of it.
This is how I looked at it when I made my decision I KNEW I hated my life with uc, I KNEW I was miserable, and after surgery I MiGHt be miserable, but I had talked to so many people who were happy that I was comfortable taking the chance!
Good luck!

Hubby had UC and no Crohns but has not regretted his decision one bit. Fortunately there are others here that can give you some insight and advice more relevant to your situtation.

You really need to decide for yourself and when the time is right as it is such a personal decision. But having said that, there are a lot of threads here with a lot of very honest information that I am sure will be a big help too as it was for us when the time came.

I just wanted to add though that I do know a few people who have ostomies and are on meds for small bowel CD. They are doing very well. Sometimes it is the case that the diseased bowel has to go and I don't mean to sound discouraging in any way. You've lived with it for long enough and if you make the decision for surgery I would think you'd almost undoubtedly be much better off than where you are now.

After reading Eq Mom's post I was reminded of my own pro/con list.

Until I sat down and actually logged things, I didn't realize just how many pro's I had vs con's.   You may find the opposite, but it helped to see things in writing and truly put it all into perspective for me.  I also wrote down every single concern I had and took it with me to my surgeon.  He allowed me to go through them one-by-one and addressed each one of them.  He added a couple of minor potential issues that I missed and suggested I go home and look into them before making my final decision.

Welcome!

My colectomy was elective, but it was an emergency to me. I had diverticulosis of the entire colon, numerous infections. I was plagued with the unknowns of having surgery. I used to perceive surgery as a 'had to have' and/or 'emergency.' I was so indecisive, maybe even in denial. After couple cr surgeon consults, I realized I couldn't live like this anymore. Didn't want to take the chance of it getting to the emergency level. I also had to make the decision of performing a resection or total colectomy. I had 6 infections in my ascending and only 1 in my descending. I had to think about how diseased everything was and make the decision entirely on my quality of life. I was 37, single mom of 2...need to be healthy for them too! Couldn't fathom keeping diseased sections of my colon, so I opted for a total colectomy. My colectomy was performed with immediate connection of ileum to rectum, but it disconnected and an ileostomy was performed. I've had it now for almost 2 years.

It's been a rollercoaster of emotions, but having my diseased colon gone is a true blessing. My health, other than sb obstructions due to possible adhesion's, has been so great that I've been considering keeping my ileostomy. I just want it all over with, I can't imagine going back in to reconnect....even after all this time. I was so sick for so long, I dreamed of having a healthy life, and now I have it and I wish you the same clarity.

Best of luck with your decisions and you can always switch over to this board when you need us!

Nice Cup of Tea,
I can relate to your fear of surgery and what you're going through emotionally. I was extremely anti-surgery and did everything for 7 years to try to save my colon.

When things got really bad, I agreed to a temporary ileostomy, which worked out well for me, because I was able to "test drive" it before having to make a decision. It turned out that I loved the freedom it gave me from having to be near a bathroom all the time. I felt so much better, had more energy, and was able to sleep through the night without having to wake up every hour to go to the bathroom. I could eat whatever I wanted without suffering in pain afterward. The best was being able to leisurely shop for clothes without having to sprint to the bathroom several times.

After 8 months with a temp ileo, I started bleeding from the rectum, even though I wasn't using my colon. That's when I made my pro and con list regarding whether to continue to keep my colon or have it removed. When I found out that people with Crohn's are at a higher risk for colon cancer, I thought, "why am I holding onto a diseased organ that I don't even need?" That's when I made up my mind, called my surgeon, and scheduled surgery. I have no regrets, but I do understand what a difficult decision it is to make.

Hugs to you,
Cecilia