Not life threatening.. but how long can I stay like this?

So it's looking more and more likely that my issue is a narrowed stoma and it needs revising. No big deal, I can cope with that and from what I can gather should be relatively straightforwards. In a way I'm relieved and just pray it solves the issues.

My symptoms are crazy now though.. since I left the hospital on Tuesday I've had alternating high volume water output or weird foam. I did a bag change yesterday and output was forcefully squirting all over the bathroom, it was like something out of a horror show, like I'd hit an arterial vein! nothing I've ever experienced before like that.

I'm hardly eating anything solid, I had 3 white crackers on Wednesday and they got obstructed. I'm ok with a tiny bowl of cornflakes, yoghurt, a meal replacement/protein drink and sports drink and that's it. I feel sick pretty much 24/7 and have lost 8lbs in just over a week.

The problem is that my regular surgeon is on holiday and can't do anything until 4th September - 18 days time. Another local - an older, more traditional and experienced - surgeon has looked at me and said (I quote) that he won't operate on another surgeon's patient unless it's life threatening. I know from his secretary that he has an operating slot next Thursday and I think I might be able to persuade him to take me on. He doesn't know what's been happening since I left hospital, so doesn't know about the water output etc.

I love my regular surgeon, but I'm not sure I can wait that long. I'm seeing the old guy on Monday and hoping I can persuade him to take me on. He has a good reputation but doesn't do anything lapro. In the back of my mind, I'm wondering if he might in fact create a better stoma than the one I've got.

What would you do?? try and sit it out or try and persuade the older guy to take it on? There is every chance he won't though in which case, is it reasonable to leave me like this for another 2.5 weeks?

Could this become acute/life threatening? I don't want to end up in the ER and have any old surgeon get his hands on me because it's become an emergency.

Thanks

Sarah sorry you are dealing with this. Truly hoping everything works out ok and this is over and done with soon for you. 2 1/2 weeks won't be an easy wait but if you can somehow manage and get the Dr you feel most comfortable with that would be the best thing for you...why do these things happen when the timing is just not right for one reason or another. {{{HUGS}}}

Sarah sounds like you have a separate thing going on of wondering if it's your first surgeon's fault that your stoma isn't working. That seems a reasonable question, and I'm not sure how you'd go about finding the answer. I don't blame my surgeon for my complications, just because I was so sick and on prednisone etc.... but maybe I also just don't want to blame her because I like her.... so hard to sort out.

But you absolutely have the right to go to someone else if you're not happy w/your treatment.

I think in appropriate doses, a bit of self-pity is OK..... and this would be one of those times.... for me, when I let myself go there, I usually get bored with it after a bit .... fastest way out is through ....

Hang in.

Thanks Ron

Alcie thanks for your comments - I've had all my surgery done lapro so far (apart from my stoma reversal which is my biggest scar), but I don't know what the difference would be (if any) when it comes to a stoma revision? do you know?

There are no other surgeons in this area and it would mean a trip to London which I really don't want, however, I also need to make sure I get the best surgeon and it has crossed my mind. I may well do some research and have a look.

At this point, I really just want the best stoma going forwards so I can get my life back. I am losing some weight (about 1lb a day) but managing to potter about and it's not like I'm in pain or bed bound. I just don't dare eat anything solid and am getting enough calories in via liquids. I've never had a PICC line before, and it's never been suggested but hopefully with the stoma revision, I'd only be in a couple of days? IV's only usually last 24 hours in my veins for some reason, then they blow. Dont' know why so it might be worth looking at that.

I've spoken to the old surgeon's secretary this evening and he apparently won't do anything unless he has my original surgeon's permission (he's on holiday in France!) or it is life threatening - or I get referred by my GP to become his patient instead. It would be 'awkward' apparently. For goodness sake!! He's still prepared to see me on Monday though.

So I'm thinking I'll speak to my GP on Monday before the appt with this new guy and see what they suggest.

If things get worse I'll go to the ER, but I'm honestly ok pottering about and now I'm just doing liquids the nausea has passed.

How people do those liquid diets for weight loss i have NO idea !

Sarah, I JUST went through this with my 4 year old stoma. March 11 it started to stenose. Turned a weird dark red color, got really swelly, any solids clogged, I had the squirting water all over the bathroom thing. By April 7th I was vomiting (not poop as not in an sbo) but vomiting and in pain and nausea and on IV's could not hold anything down. struggled about until May 30th and ended up going to the ER with severe spasms and was put on IV's and dilaudid. June 4th had my stoma revised lapro. Did not get a great result and am having some issues, but jeeze thank God I got relief.

Unbelievably the new surgeons in the hospital where I got my original ileo that was good for 4 years TOTALLY ignored by desperate pleas for help! My original ileo surgeon had retired and the new one said I was "bowel fixated" or some negligent thing like that. I was left to stagger about on no food unable to even take in fluids and find my own help; then a general surgeon did the revision at this other place I found who I thought was going to be working WITH a colorectal specialist and that was not how it went. Thus not the greatest result but thank god someone helped. His heart was certainly in the right place. Someone had to open the thing up.

So I went 3 God awful months with your symptoms. IF you can drink Boost Breeze Clear liquid nutrition, that seems to go through the best. This WILL get progressively serious and WILL become life threatening, BUT you may be able to wait it out 2.5 weeks. See how you feel. ONe hint, lie on your side with the stoma and it seems to crack it open a bit and let some stuff out.

This is why I am trying all out to get my symptoms of what I think is restenosis properly diagnosed that may be happening with this new stoma. I sure don't WANT another surgery, but I have so many of the same symptoms, yet not nearly as severe, that I why I am persisting in getting some straight answers. I just cannot be left like that again. MOST people's docs don't just leave them stenosed, but you know how I just happen to meet up with some docs who do not take their jobs seriously. I don't know why I keep doing it, but be your own advocate. GOOD LUCK! Rosemary

I'm sorry you have to go through all this. My surgeon at the Cleveland clinic was old school, too, and he wouldn't do my surgeries lapro because he believes the benefits don't outweigh the risks. But there are surgeons there who do. If I were younger, I might have done it lapro but I'm 40 with three kids so the scars are not a huge deal to me.

Having said that, I'm guessing there wouldn't be much scarring caused by a stoma revision so I don't know if that would be an issue. If you were miserable, I would go ahead and have it done but then again I hate to wait for anything.

Wouldn't your surgeon understand and give the old guy the go ahead? And also, if you wait until your surgeon comes back, will you be able to have the surgery right away or will that be another wait?

They can take down the adhesions behind the stoma laproscopically then the actual stoma reconstruction is done right at the site. Unless you have horrific adhesions way deep inside I can think of no reason this would have to be done open surgery.

Sarah, yours sounds emergent, I would HOPE they would deal with you ASAP. Course I was put off 3 months with no offer of help and had to find my own, then the revision not so good, with current narrowing and weird shape, but that was my Karma. I would think anyone else would get help ASAP. WHen you think of it, it is like a normal intact person having their rectum scarred shut or almost. THAT would be viewed as an emergency I would think.

I take that back, way back when my rectum was scarred shut from the sigmoid resection, it took me MONTHS to get help and they just said "constipation." BUT again, other people would likely get help from the get go. Keep after them. Hope you are hanging on with your clear liquid protein. Rosemary

Glad you're feeling more stable and can make a decision outside of an emergency. It does sound like this stoma has never worked well. Hope the next two weeks are smooth and uneventful. Hang in.

Thanks Cecilia.. that's a really good point. My kids are both starting at new schools on 6th Sept and I really wanted to be there for them (esp one who has special needs so it could be a bit traumatic) and getting surgery earlier would be better.

As much as I love my initial surgeon, there are a few doubts in the back of my mind and I wonder if the old guy might do a better job.

Will speak to GP tomorrow and keep you posted.

Sarah- so sorry you are going through this. The choice on the surgeon is a tough one. I can totally understand why you want to wait it out for a couple of weeks to work with your original surgeon. I couldn't imagine going to a different surgeon than my original one. One of my biggest fears is that he will move away or stop taking my insurance and that if I ever have future issues I would have to go to someone else. But he did a great job too and I liked working with him. It is hard to say if your stoma issue is a reflection of your surgeon. I think sometimes despite the best skill on their part, our bodies still have a mind of their own. Still, it couldn't hurt to have a consult with the new guy and see what your options are. As far as him doing the surgery open- that might just be his preference. My surgeon is on the younger side, is one of the top surgeons in my area and still preferred to do my surgery open.

Hang in there!

-Heidi

Well the 'old guy' had to cancel his entire clinic last night as a big emergency had come in, so I didn't get to see him after all. I have no idea when his next clinic is.

I was feeling a little better yesterday and made the huge mistake of eating a tiny dinner of some rice and white fish.. BAD IDEA. Immediately became obstructed, has spurting water output and felt terrible.

My GP says I can't go on like this and can't wait another 2 weeks. The first opportunity for surgery with my original surgeon is still 4th Sept.. possibly 11th.

So... today I'll be on the case to get to see someone ASAP and work out a way forwards. The only other option is to get referred to somewhere completely different and go see another surgeon in London. But that'll mean more waiting, testing, transfer of files and travel. SIGH.

Rosemary, I'm so sorry you are still going through this and just hope you can get sorted soon. Are you sure it's the stoma and not adhesions? or something else going on?

Thanks Sub.. I think I'm getting in enough calories - although the quality of said calories is questionable! - with meal replacement drinks, yoghurt, soup etc. But I'm hoping it'll keep me going until I can get this sorted. I do get hungry occasionally and then try to eat something more solid, which is a disaster. So long as I stick to liquids it's just about ok. Strangely I can afford to lose a few pounds.. the lack of training of recent years has put me about 10lbs heavier than I was when competing, so I don't think it's a huge problem. That said, a PICC line is a good idea and I'll keep and eye on things and suggest it if things aren't improving. How does the PICC line work exactly?? I've never had one.

I'll get on the case now and see if anyone can help me! it's so frustrating. Like Rosemary, I don't think I should be sitting here searching 'stoma revision' surgeons on the internet within a 40 mile radius! crazy.

PICC lines are not just used for TPN. If you are on an extended hospital stay, you often end up with a PICC line because the regular IVs blow out too often. It is not a big deal to get a PICC line; however, there is a risk involved.
You might want to ask your GP about your nutritional status and whether or not TPN is advisable at this point in time.... particular since you seemingly are going to have surgery. This is definitely something that I think your GP should be on top of.
Also.. you are quite adventorous, rice is a definite slower downer/blocker upper. Stay away from rice, oatmeal, peanut butter.