Confused and depressed

So.. as you know I've been struggling on with 'partial obstructions', nausea, not being able to eat, watery output for a few months. Every time I try to eat solid food I'm awake all night in discomfort (not pain), bloated, feeling sick, no output, then gushing watery output, weird foamy output and just generally unwell - not life threatening or seriously ill, but just unwell and nauseous. I was admitted last week to hospital, but they found no evidence of obstruction and CT was clear (by then I'd not eaten for 36 hours). My normal surgeon and another more experienced local guy both tried to examine the stoma and couldn't get their fingers in. Their words were 'it felt tight' and 'couldn't find a way in'.. although there was no sign of any stricture on the CT. The theory being that the stoma might be narrowed somehow but no radiographic evidence at all.

I'm managing by not eating solid food, but sticking to liquids, yoghurt, meal replacements, soup etc etc and even though I'm losing weight and feeling a little 'fragile' I'm able to function and I don't feel as ill as when I try to eat food.

I finally saw my surgeon today, who basically said he doesn't want to 'rush into another operation' (ie to revise the stoma) and he wants me to see a global expert in small bowel motility in London. In order to fully confirm a small bowel motility issue they'd need to do a biopsy apparently, so he said if that's the case he'd be prepared to revise the stoma at the same time as doing the biopsy, but the guy in London would have to say so. I think my surgeon is at a loss and doesn't know what to do. I've had 4 operations and before I had this stoma there was the question that it might be a motility disorder throughout the whole gut, not just my colon (the reason I had the second stoma). They dont' really know why, but it could be to do with the peritonitis I had right at the beginning which damaged nerves etc.

The first temporary stoma I had worked like a dream though and this one was 'ok' (although not as good) for the first 8 months or so. Anyway...

I called the 'global expert's secretary today and can't get an appointment until 27th OCTOBER! that's 2 months away and that's private.. not on the NHS (I"m guessing that waiting list would be years). And that's just the first consultation before they even do any tests or I get any treatment.. if there is any.

Right now I feel lost, alone and really not knowing where to turn for help. I emailed my guy straight back and said I can't wait another 2 months before anyone does anything (I've lost 9lbs in the last 2 weeks) but yet to get a reply. I'm able to function and get about and I am able to do bits of work and care for my kids, so it's not desperate, but not sure if I can wait 2 months before I get to see anyone..

Does ANYONE know anything about small bowel motility and what are you symptoms? What do you all think? what should I do? I could ask my GP to refer me to another hospital altogether and see another surgeon and start all over again.

I've asked my surgeon to speak to this 'expert' and see what he suggests. He might want him to revise the stoma and do the biopsy BEFORE I see him on 27th.. of course if the stoma started working brilliantly, then I wouldn't need to bother.

Sorry for the ramble, but brain is all over the place.

Virtual hugs, advice and empathy needed please... :-(

Sorry to read this, Sarah. I am sorry I have nothing to offer by way of advice, but I do hope and pray that you get the answers (and relief) you need soon.

Why do they have to do surgery? I don't comprehend what looking at a sleeping gut will prove unless they can somehow see a blockage or stricture, and that can be done less invasively, according to my experience as a patient. Plain CT doesn't show everything either, which is why I had 3 years of surgeries and procedures, 6 in all, instead of having things cleared up the first time.

When I was being checked for obstruction I was given first a thin barium swallow, then later I was given gastrografin to drink. This was followed by gastrografin "enema" up the stoma. They decided there might be another rupture, so didn't want to use any more barium as letting that stuff loose in the belly is not a good idea. Therefore the gastrografin.

Gastrografin stimulates the gut, at least if it's drunk for a test on a normal gut. The result is diarrhea for a few hours. I didn't have any trouble with that though after my ostomy. It did show an abscess blocking small intestine.

I don't have any advice to offer, but I am thinking of you and hope that you find a doctor who can help soon. I can't imagine how hard this must be. Sending a big hug your way.

Sarah,

YOU HAVE A STENOSIS!!!!!!! Your motility is hunky dory if this stoma UNTIL the stenosis worked and your first one worked.

INSIST on another doc, if they MUST do a biopsy then go ahead and revise the thing PRONTO!!!!!! Then they will be satisfied that you have no motility issue, AND you will once again be able to pass waste.

Lay this logic on them. Say "MY stoma is so narrowed that you cannot get your finger in. It is so narrowed that I can get nothing but liquid out. I am going to waste away and die if you don't do something SOON!

I cannot believe this! I thought only in America and only with ME! But I see this is global. WHILE you are somewhat strong, get aggressive. This IS life threatening! IF need be, tell them is would be like if their rectum narrowed so much that they could only pass liquid and were not able to eat. This is no different!

GOOD LUCK. Auuugh! Also remind them that the only test for stenosis is the not being able to get the fifth finger in. These do NOT show up on CT's, not on retrograde enema's, and not on ileoscopies. My ileoscopy they used a pediatric gastroscope that is like a hair in diameter, of course that went in. Jeeze!

I THINK what they do not want to deal with is your obvious adhesions from your prior surgeries and from the peritonitis. DOCS NEVER Want to talk about adhesions. They do have to cut them to make a new stoma as they need to free up more bowel. THEN if no adhesion barrier is applied, then the adhesions can grow back even worse because adhesions have some substance in them that when cut they like to grow back stronger. IF you get nowhere, flat out ask if this is the hesitancy.

IF SO, you are right there in Europe. Jens Pagels a GYN in germany is into Sprayshield adhesion barrier. He works with a general surgeon Dr. Linder.. They were reviewing my case as I was interested in SprayShield. BUT when I mentioned I had found a colorecatal specialist out west here in the US they did not go further with my case as they were not colorectal specialists.

You also have in Germany Dr. Mathius Korrell at Duisburg University Hospital. I don't think he is a colorectal surgeon but he could point you in the right direction. If worse comes to worse would you be able to come to the states? I could tell you by private message who would be open to helping you.

As you know I am fighting some issues with my revised stoma being extremely narrow and going for soon consult. BUT I can eat significantly more than you can. I have been trying some very soft things. Stoma still extremely hard when I am standing or sitting and soft when I am lying down. Obviously it is being squeezed off by some structure or it would not be chronically hard. Plus the hole is now on the side, and I have to do a degree of gastric gymnastics, but jeeze, nothing like yours. Remember I ended up on IV's with my definitive stricture and lost all my left arm veins. You may be heading this route so remind your docs.

Be proactive. Rosemary

Post Edited (esoR) : 8/31/2012 9:54:02 PM (GMT-6)

Sarah,

I am sending you millions of virtual hugs to surround you every minute of the day. As to advice: Beg your normal surgeon to call in whatever favors he can to get you into the global expert faster. I am so worried about you. Would having a pushy Canadian-American making calls for you be of any help? I cannot imagine how difficult each day must be. You are such a wonderful person, a great asset to your family and community, especially to ours!

On my very worst days when I felt full of despair and confusion, it helped to make a list of things I was grateful to have in my life. It helped balance out the feelings, especially the feeling that everything felt out of my control. You will get control of your life again but it will never happen as fast as you want it to.

I have been researching and experimenting with how to live on liquids without losing too much weight or nutrients. I still cannot eat solids on a regular basis. The pain becomes unbearable. I tried the meal replacement drinks and found them so full of sugar and corn syrup that I cannot face drinking them all of the time. It is really late here but I will send you good recipes as soon as I can. We found some fun ones that sounded horrible but were actually delicious.The ingredients were easy to find just not things we would normally have thought of. There is plenty of protein,vitamins, minerals and some healthy fats. All you need is a blender and about 10 minutes of prep time. Even my extremely picky teenager is getting excited by our creations.

I am too tired to continue. OOOOOOOO, a giant virtual good night hug. --Cynthia

Oh bless you all so much for your wonderful replies and support It really means a lot and really really helps. I also just got my husband to read through everything and he said 'what a lovely group of people!'. I absolutely cannot wait until end of October.. that's crazy, so I'm going to put my 'Britishness' to one side and try and be more pushy and American ;-)

There is basically this team in London who are 'experts' in motility - a group who work out of St Barts and also privately, including the global dude I'm supposed to be seeing in October. I need to get in to see any one of the top guys within this team, so on Monday that's my task.. I'll just get on the phone and pester them until I find someone who'll see me ASAP. I'll then just get my regular surgeon to email over the case, CT's etc etc.

I'm trying really hard with my diet, but it's tricky. I have just had some soup and white crackers.. will see how that works through. I'm managing with disgusting meal replacement shakes and soup and stuff, but it's not a long term solution! I know exactly what you mean about sugar and lack of nutrients Sub.. would love some of your recipes - please send them to sarahsrunners@aol.com. I have a juicer and do an orange, carrot and apple mix which is full of nutrients, but must get my book out for some more veg related ideas.

Rosemary, so to hear of your ongoing problems. Thinking of you.

On the upside, we went up to the paralympics today and although I'm completely exhausted now, it was worth it. My friend Richard Whitehead won Gold for GB in the T42 200m. Was awesome.

sarah, good girl. become that pushy american and get that sooner appt. Tell them you are going to die as you cannot eat. Everyone should understand that. For the next week until the med flight west, I am going to just have to go back on all liquids except my rice crispies and milk and yogurt and OJ and coffee in the morning. This at least moves out a BIT of gas in the form of yellow bubbles. Sarah, did you mention that you have the yellow bubbles in the morning too?

UC....OK on the juicers, I had the idea, but I do not have one. Is the idea that you put all these real veggies and fruits in it and all that comes out is the pure liquid juice and the pulp goes into another bin and we drink the juice and still get all the nutrients?

I may have to get one of these.

Also with the juicer, do you cook the veggies or juice them raw? Rosemary

Hi Sarah.
So sorry to hear this. 2 months is ridiculous! But it really does sound like its more of a stenosis problem rather than a motility issue. Especially if finger test failed. Can't you have a small bowel motility study before you have a biopsy? Less invasive and should give good indication if there are motility issues. A few months ago I had one, they used contrast (had to swallow little bit at a time while they took x rays at intervals over 2 hours) admittedly this is fluid and not a solid contrast but it does indicate whether there are motility problems. I've also had the gastro graffin but as it stimulates the bowel and causes severe diarrhea it's not an accurate indication of motility. I had a functional subacute obstruction last year (one of many) caused by dilated and twisted bowel and gastrograffin liquid passed straight through with severe diarrhea. Dr was delighted and discharged me from hosp saying there was no obstruction - starting eating again (fluids and bit of runny mash) and within few hours I was so distended from obstruction that I was rushed to theatre!

Keep up the meal replacement shakes and make sure you have high protein shakes and nutritious veggie soups. I used to eat slab of chocolate a day (self-confessed chocaholic) if you suck it long enough it becomes a fluid - and with all nutritious soups and shakes maintained my weight for 6 years without eating solids. Rosemary have also thought I'd turn diabetic before long!! Luckily so far so good!

Thinking of you Sarah and sending lots of virtual hugs and prayers your way

Xxx Lolly

Sarah - also sending hugs and prayers over to you. I hope this can get resolved soon for you. I feel very badly for what you and others endure when things go wrong. The waiting is not right...these are emergency situations in my mind and should place you on the top of a list for an appt and treatment.

Thanks B'dereh.. I will call everyone lots tomorrow! it's the weekend don't worry.. I have all my American forum friends right behind me here keep the support coming.. it's really helping. thanks x

Sarah,
Thanks for the juicer connection. I will look it up. Whether stenosis or motility, get them going. Good luck with calls tomorrow. i am back to liquids. I can't wait til I get out west to the colorectal surgeon. I KNOW mine is stenosed, injured from cracked stoma from resident finger dilation subsequent scarring, mucolsal seeding yada yada. The surgeon will know more. They may even do some motility thing, but that is OK as I know it will turn out fine for me. I have speedy guts and always have but the exit is blocking. Terrified of some adhesion issue, but hopefully this doc can do lapro "magic". WIll look up the juicer.

lolly hope you are doing well.

Back to packing and getting my "crap together" auuuugh! sorry could not resist. I too find that chocolate sails right through. Wouldn't you know something bad for us would. I know this waiting with emergent issues, who can figure.

Rosemary

Sarah,

I ventured into some solid food today and had the Q-tip diameter ribbon of thick output I had to literally push out of my stoma by pushing on some pain area between navel and stoma. THEN I did the grape juice. BUT do you know what WOULD HAVE BEEN enough all by itself is coconut water. That will melt stool down too big time. I did not need both. Yikes. Now it is flooding out of me. I need to just stick to clears til I get help, God willing. Trust me if Coconut water and grape juice speed up your guts you are normal.

Good luck with the calls. End of Labor day weekend here. Rosemary