Not feeling great.. what to do!?

I think I have some sort of obstruction. Not been feeling great all day, woke up couldn't eat breakfast, managed a milkshake meal replacement (well half of it) and a tiny portion of scrambled egg and white toast - more to see what happened really.

I've been drinking sports drink, gallons of water and hot tea all day and have very little output. I have no pain, but am feeling utterly wiped out and weak. I had a warm bath, massaged my stomach and have been for a walk - nothing has made much difference.

There's nothing really coming out of my stoma - although to be fair there's nothing gone in. I'm urinating and don't feel dehydrated. My stoma is making farting noises and I'm getting a tiny amount of liquidy stool but nothing more.

Over the last few months I've had this more often (possibly once or twice a week) - although not to this extent. I've been working really hard on my diet as this has been happening more often recently. Yesterday the only thing I did differently was to have some fish stew last night (not a giant portion either) and the only thing that was different was that it had fennel in it (soft and well cooked) but never had that before. I'm guessing it might be a bit like celery?

I dont' think I need to rush off to A&E but can anyone suggest what I should do?? keep an eye on things and see what happens?

Am really scared as this is how I felt before I had the ileostomy put back :-( Oh I also feel a bit shivery.. but think I'm just cold as haven't eaten much.

Any suggestions?

Thank you so much for the reply and your advice. It seems like a partial obstruction of some sort as liquidy stool is passing through, but everything feels/sounds like it's working overtime and I feel really full and nauseous. But I have no pain. I've had some white toast and tea and do feel a little better tonight although still no real output and am absolutely wiped.

Ironically I saw my consultant last week and told him how well I was doing! LOL

Now I come to think about it though I'm having to eliminate more and more foods from my diet and I'm getting more and more limited. I can't drink alcohol AT ALL (not that's a real issue - more of an observation) without feeling terrible the next day even after just a tiny amount. Not really sure what's going on - if anything - but Rosemary's recent experience has scared me and this feeling today is almost the same as how I felt prior to the ileo surgery.

I never felt like this when I had the loop ileo before and ate pretty much what I wanted. This is very very different.

Will keep you posted! thanks again x

thanks uc_free.. that sounds awful! nothing like what I have at the moment. Must have been a long 12 hours..

I'm not sure about passing last nights dinner.. possibly a bit? it's hard to tell sometimes. Certainly not passed anything today that would indicate a blockage of any sort.

I'm totally wiped, so off to bed and hopefully feel better in the morning. Praying I'll wake up with a nice full pouch in the morning.

Thanks again

Sarah,

I just noticed your end ileo was made almost one year ago. I had to start eating blander after one year's time, but not very dramatically until this year, but for one total year I could eat what I used to eat as a non-ostomate. Get this checked. Rosemary

Thinking of you -- hope you can get some answers; it does sound very scary. Could this be a functional issue w/the colonic inertia?

Hang in.

I hear you Sarah, seems like for some of us this freakin nightmare never ends. As they said just go to ER if things get acute. Good luck. Thinking of you. Rosemary

seems like so far the new stoma is putting out what I put in but I am very scared to try much for food. Still pretty tired, but all I can say is one day at a time and thank God I finally found someone to deal with this. Your symptoms sound so much like mine, the stenosis thing is something you should check into seriously. Good luck. Rosemary

about a year before I ended up with the adhesion surgery, I started having problems with popcorn getting stuck, and feeling bloated for a long time after I ate. Up until the day I went into the er, I was still passing stuff. But you might want to have them see if adhesions are forming.
Hope you feel better!

Gosh sarah i am sorry and amazed to hear of this.  Hope it is nothing but a blip and you are feeling on top again. x

Sarah,

When they redid my stoma, the surgeons at Mt. Sinai in NYC went in laproscopically to look for adhesions behind the stoma. The only ones they found that they figured were actually affecting the stoma were those at the stoma site. They did a very neat job one port in my belly button and one way over on my left side. I had had 2 prior open bikini cut surgeries and 2 open midline incision cut surgeries. It is said that it is NEVER safe to do laproscopic on someone with prior open surgeries, but my docs at Sinai did it and they did not knick any bowel or anything. So adhesions can be assessed laproscopically if you get the right docs.

I think you are from the UK. Google Laproscopic experts. I saw the Greensteins at Mt. Sinai in NYC. It is a father and son team. At one point I THINK I was told I was loaded with adhesions but none that were impeding anything further in than at the stoma site. Then I also think I was told by a resident that I did not have that bad of adhesions. BUT I was drugged at the time on pain killer so will ask for clarification at my follow up June 26. Rosemary

Sorry to respond so late. I'm so sorry Sarah that your feeling this terrible.

Whenever I go to my GP with issues, I get the same response. It's adhesions and regarding all the surgeries, I'm a ticking timebomb. It's not a nice thought and I cry every time I think about it. You have a good surgeon and he'll do what's best. Again, he did what most surgeon's wouldn't....put your ileo back after 9 months.

Your output has been slowing, I think you wrote on a previous post that you drink grape juice sometimes to get it to go. You've been symptomatic for sometime now and I don't want it to get worse for you. So I'm hoping you get some clarity Friday because things being undefined isn't comforting. Keep us posted!

Thinking of you and wishing you all my best!!!

they found my adhesions with a ct or an mri, im not sure which one it was. I don't remember a lot from when i went in. I know they gave me that dye, that burns and makes you want to pee, then put me in a machine. Then the er Dr said, you've got some twisting, go to charlotte. So when i got there my surgeon looked and said, you've got adhesions. So they should be able to find them with tests like that.
good luck!

Generally they are not keen on operating to fix adhesions, because just that process can cause more adhesions. Sometimes you can get thing to break free by moving and twisting your own. I would suggest you try to get active and again do warm baths, showers etc. I have had many instances as you describe as i have now had six major surgeries for uc, jpoucches, failed jpouches, diverted then permanant ileos which clearly have caused massive amountsnof adhesions. I have had success in your situation by moving, stretching, etc.. and only drinking fast moving liquids until things break free.

Post Edited (ddd45) : 6/19/2012 10:00:04 PM (GMT-6)