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Posted 12/4/2012 1:46 PM (GMT 0)
I can't believe I'm posting this.. especially given Rosemary and Lucky Lass latest exploits, but I fear my recent surgery and stoma revision hasn't worked. For anyone new reading this and especially those who are having surgery or contemplating it.. please be assured that despite it being the hot topic on this forum at the moment.. stoma stenosis, adhesions and blockages etc are thankfully rare.

After a period of recovery after surgery, I have gradually started to try more solid foods. But I'm already getting symptoms of partial obstruction after anything vaguely solid (no output then high volume water output), nausea, foamy output, no appetite, bloating etc etc etc.. same thing as before. I'm not completely on liquids yet but it's going that way.. I've tried to digitate the stoma and can't get my finger past the abdominal wall.. I'm pretty sure it's either narrowed again or there are adhesions/kinks which have developed again.

UGHHHHHH!!!!!!!!!!!!!!!!!!!!

Just cancelled a fancy overnight hotel stay on Friday to celebrate my husbands 40th. What's the point if I can't eat or drink and feel like crap.

Seeing surgeon on Friday....
Posted 12/4/2012 2:37 PM (GMT 0)
man this sucks! Surgeries should be to fix problems not cause other problems. grrrrr
Posted 12/4/2012 3:12 PM (GMT 0)
Hi Sarah,
this must be incredibly frustrating but be patient to work it through (can you get an earlier appointment with the doctor?) and not let it color your view of the entire picture. It does sound like a run-of-the-mill blockage if I can say such a thing, and maybe you need to go to ER to get it resolved. Are you taking the warm bath and massaging the area, long walks and loads of hot herbal tea? I would do everything I can in the way of home treatment and see if it passes. And relax yourself, easy for me to say.

PS: What you wrote at the start of your post was lovely, not to discourage people who are at the beginning.

Posted 12/4/2012 7:51 PM (GMT 0)
Sarah,

I am so sorry to read this. Hang in there!! Hopefully the surgeon will have an answer on Friday. Please keep us posted.
Posted 12/4/2012 11:30 PM (GMT 0)
Sarah

I am so sorry to hear this and welcome to my world. Can you get to an ER? When i went there sunday the resident put in a 24 french catheter into my stoma and drained out a ton of backed up everything. I am having to per$anently wear this thing in my stoma. Even milk products back up in back of this. So i am back to basically clear and clear liquid protein shakes. Even then i have to drown it all out with grape juice in the end. Today i learned how to change the bag with the tube in and the tube fell out. I quickly grabbed it and put it back in me. See to this right away. They are telling me it is inflammation but i think mine iss stenosis due to incorrect revision technique. I have done a lot of research. So much is not us but how the stomas are done. This is terrible. Goood luck. Maybe this is ano epidemic! Rosemary.
Posted 12/5/2012 3:36 AM (GMT 0)
Oh no Sarah not you to , I am hoping for your sake it could be just a blockage caused by what you ate its so unfair we have suffered so much have you called the doctor ?

I triedmy first solid yesterday ( couldn't. Resist a sausage an cheese. Muffin ) took top part of muffin off and only ate bottom but have suffered. Since, lot of stomach cramp watery output and top it all off had a bag leak and woke to a yuk bed at 4am :( still having cramps today and back on liquids .

I hope your feeling better Sarah thinking of you and rosemary
Lucky lass
Posted 12/5/2012 4:10 AM (GMT 0)
Lucky only liquids!!!!! I wonder if it is safe to have a stoma drain tube in me for 2 plus weeks! Rosemary
Posted 12/5/2012 8:02 AM (GMT 0)
I don't need to go to the ER.. It's not an acute blockage, I'm not in pain and they'd just send me straight home. It's just like it was before.. just that feeling of partial obstruction after solid food, water output, nausea and no appetite. I can still eat the odd bit of toast but a normal (small) size meal is not good.. regardless of what it is. 10 days ago it was ok.. and I felt on the road to recovery. But I'm pretty sure this is past the 'inflammation from surgery' thing and is now becoming a real problem. UGGHH can't believe it.

Rosemary/Lucky - thinking of you both. Lucky - don't attempt to eat solid food. It won't pass. You have to stick on liquids and not even bother trying until you get this sorted. So unfair I know.

Can't believe we're going through this. It's just rubbish.
Posted 12/5/2012 12:08 PM (GMT 0)
Sarah, myu cirrent stenosis set in in a week. The prior styoma stenose in about two weeks, that inflammation phase i think is long past. I think these are strictures in both of us. I still have my drain tube in for two weeks at least. Sometimes it hurts a bit and drains less well thaty other times. I wonder if it can get clogged or if oistion has to do with it. See if you can get one as a sytop gap measure if theuy are safe. If your doc says not safe please let me know Rosemary god bless us both. I am scared i am going to die. R
Posted 12/5/2012 2:27 PM (GMT 0)
sara... so sorry to hear. I am reallly hoping its just a partial obstruction which just happens sometimes. I know with your history it is hard to think it may just be that. But many of us, especially so soon after a surgery have been hit with partial obstructions. Trust you have and/or doing are the usual stuff to clear help resolve the partial obstructions - hot baths,showers, twisting, bending, massaging abdomen and back, etc...Crossing fingers for you. Glad to know you are seeing the surgeon.
Posted 12/5/2012 2:38 PM (GMT 0)
Sarah my place is saying inflammation and it is 3 weeks post op. I think they don't know what to do. I found ano article by a really good stoma surgeon entitled lets make them right or something like that. It says thats most stenoses are from not enough blood supply being brought to the stoma or too much tension on the stoma. More sleep. Another day of liquids and rest. This is scary needing a drain tube! Am getting right on hunting for other help before i get too weak. RJ
Posted 12/5/2012 3:06 PM (GMT 0)
     I am wondering just how many of us would have these operations if we knew ALL the possibilities of things to go wrong.  Maybe that is why Dr. Fry was very vague and only answered the questions I asked..lol.  However, as he was leaving the room at my pre-op visit, I asked him, "By the way, are there many complications from this operation?"  He turned and said to me, "OH YES!"  That said, he made a hasty retreat down the hall...lololol.  I don't think he wanted to get into details.   In his defense, I knew I needed this operation badly.  I was going downhill in fast gear.  My rectum was a mess, badly ulcerated.  The meds were killing me.  I had a long recovery, but so far, so good with this stoma.  I get careless at times and tend to eat too quickly but I had a partial blockage a few weeks ago, and man that hurt shocked .  I feel for you people who are suffering with this.   I do hope you find relief soon.

     My blockage was able to clear itself with lots of water and my taking long walks.

Posted 12/5/2012 5:25 PM (GMT 0)
great point christine. At this moment, I'd rather crap my pants than deal with what Irommom or Rosemary deal with. That is some scary stuff. I feel so sad.
Posted 12/5/2012 5:49 PM (GMT 0)
Somedude,

Somedued, I want to quote Ironmum's first post above:
"...please be assured that despite it being the hot topic on this forum at the moment.. stoma stenosis, adhesions and blockages etc are thankfully rare. "

It is easy to read between your lines how frightened you are about surgery, even though the UC has you in not so great shape. But there are more stomas without problems than stomas with problems. And if you had surgery, you would not only be done with all the horrible symtoms, I assume you would be getting a jpouch, which means you would have a stoma for a few months. Think about it. Because I think it is really sad if it's your fears that are holding you back.
Posted 12/5/2012 5:53 PM (GMT 0)
Somedude,

YES, no matter how many success stories on this board or anywhere, and it is good that there are success stories, but i would vote for pants crapping compared to even taking a chance with this. I was lucky my first stoma gave me 4 good years. I will die in time of either bowel backup or rupture or of starvation if i don't get this straightened out. And to think i did not even have a disease nor even the pelvic prolapse operated for blow my mind. Am living on clear liquid nutrition so that hopefully my waste will continue to be able to flow thru this tiny drain tube in my stenosed stoma. Jeeze! RJ
Posted 12/5/2012 6:06 PM (GMT 0)
Somedude

BD makes a good point. However there can be issues with J pouches too! The thing to think about as i see it anyway is: can you live with what you have in more "well- being" than you could live with the possible worst case scenario of anything you have done to your body.

Then consider what are the odds that you would get the worst case scenario. Who knows? Medical world is all really an unknown in terms of outcomes. Rosemary
Posted 12/5/2012 8:19 PM (GMT 0)
Some dude please don't let our stories put you off , we are on the forum because of the troubles. We are experiencing at the moment for our sad stories I'm sure are only a very small percentage of post op complications , people who are well don't post and go on forums as much as people with troubles .
Don't be put off because of our troubles I had 4 and half years of a much better quality of life with my temp loop ileo I would do it all over again if I had the choice as I had no life at all before surgery sure there's a risk of complications but life is a risk there areno guarantees best wishes lucky
Posted 12/5/2012 8:29 PM (GMT 0)
Thing is with all of this (and Somedude's signature sums it up nicely) we don't know what we're going to get in life. Sometimes we don't have a choice at all. Sometimes we do. Sometimes we make bad decisions. Other times it all works out great. All we can do is deal with the here and now and try to make sense of what's happening. Wishing we could change the past doesn't help.

2 years ago I was training for an Ironman triathlon, had never been ill in my life. Then suddenly I had a perforated colon/peritonitis from undiagnosed diverticulitis which nearly killed me. I was 37 yrs old with 2 young boys and had no previous history at all. I'd been an elite athlete and sport scientist all my life and had an exemplary diet. This whole journey has taught me a lot and I have a different perspective on life these days.. I appreciate things in a different way. Someone asked me the other day if I regretted surgery.. well um.. I didn't have a choice actually.

Somedude, I really do understand your surgery fears and coming on here must feel like if you had surgery you'd just swap one set of problems for another. But one day you might not have a choice either. I sincerely hope it never comes to that for you. Remember that for every 1 person on here discussing their problems I reckon there are probably 100's in the World who are living wonderful healthy lives with stomas or pouches, who are far too busy living life to the full to bother with a forum! Surgery could well give you a better quality of life than you have now. Dont' dismiss it because of our experiences.

Rosemary.. I hope you can somehow get through this ongoing nightmare. I have no idea how or what the solution will be but I was researching having the stoma placed on the other side and re-sited completely. Is that something you could consider? Stay strong.

Anyway.. that's my little philosophical rant over with. I'm off for a bowl of carrot soup :-) will keep you posted with what my surgeon has to say on Friday. Frustrated doesn't even come close to how I'm feeling though.. ugh.
Posted 12/5/2012 8:29 PM (GMT 0)
Rosemary how are you maintains weight ?
I've dropped another kilo and a half and look anorexic nothing fits me and having trouble buying anything new, having blood work again today as dr rang and my magnesium and salt have dropped to low again getting tired of being jabbed its really boring and dream of one day being fixed up and sort of healthy again ( sigh )

Sarah
My new surgeon won't do any surgery for at least another 4 months he said inflamation takes weeks to months to settle down also swelling. So this can still be happening with you , what I don't get is why did the three of our stomas work so well for 2to 3 weeks then pack up ? Does infflamation take that long to kick in ?
Lucky
Posted 12/5/2012 8:54 PM (GMT 0)
Lucky.. I'm sorry you're still losing weight. I get the whole anorexic thing.. and am starting to lose again too. I'm fed up with people saying to me 'oh look at you skinny minny' ! I mean.. DUH I've been ill. Anyway I digress.. are you able to have ensure plus shakes or chocolate or anything like that? how's that working? can you drink oral rehydration solutions to get the salts back in without too much volume? I totally get the 'dream'.. I'm with you on that.

I don't think this is inflammation.. I cant' get my finger in the stoma passed the abdominal wall. It feels just like it did before. I'm pretty sure it's adhesions and it's just sodding bad luck. I'm 5 weeks post surgery now and theoretically things should be much more settled by now. I don't know why it's happened but possibly it's more widespread than we realise. Who knows. Will see what my Prof has to say. I'm dreaming about Christmas dinner but fear it will stay a dream.
Posted 12/5/2012 9:39 PM (GMT 0)
Lucky i am having 4 boost breeze clear liquid nutrition drinks per day. C grams of protein in each not nearly enough protein but then there is 250 calories in each so that will maintain weight. I some days do hae a 20 protein gram shake that is milk based. Then the milk base gunks up in me.

I am hearing about this whole inflammation thing too. I too heard from one doc retroactively after my sept stoma revision that wait time is 6 months. With that stoma i could have waited. This surgeon did not tell me. Some say three months, some say 6. But in the meantime how do we stay nourished. Protein makes for healing. Nobody has done recent blood work on me. Rosemary
Posted 12/5/2012 9:58 PM (GMT 0)
I don't know what to say:-( sorry to hear of the revision complications.

Sending all of you lots of HEALING VIBES!
Posted 12/5/2012 10:54 PM (GMT 0)
Oh yum Sarah Christmas dinner roast pork with all the trimmings yum drooling thinking about it :) sadly its just that drool but no taste of it oh memories !
Hoping the prof can give you some answers Sarah must be very disappointing but try stay positive and being so thin is awful I agree
I'm drinking resource. Protein drinks but still not gaining. Weight to scared to try anything other than home made soup and stew
Lucky

Rosemary
Posted 12/6/2012 1:32 AM (GMT 0)
Lucky if you are doing stew, then you could do a clear liquid protein drink. It is like water. It basically absorbs into you. Rosemary
Posted 12/6/2012 3:15 AM (GMT 0)
Sarah, I am so sorry to hear about this new development .... what a bad break. I guess this will make the decision about reversal easier? Hope this is something that won't affect that option or that your Prof has more to offer.

Somedude, there are risks of the drugs and the disease itself too. Unfortunately, as others have said, often none of the choices are great. In my case, I was in the hospital with a 104.6 fever, on two different immunosuppressives that have fatal infections as possible side effects. I was covered with boils and had an inflammatory eye condition that was so painful I could barely be in the light..... I have had my complications from surgery, but not as bad as some of the others here.... really hope you get better and avoid surgery forever, but in my case, it made things a whole lot better, and I am so happy I am not putting those poison drugs in my body anymore (although, perhaps I will choose to do that again, as it'll be better than some alternative).
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