Ileostomy problems causing severe pain and frustration - seeking advice

I've been having problems with my ileostomy for well over a year and been in and out of A&E with severe abdominal pain several times. The A&E doctors only seem concerned that the stoma still has output. It stops working while I'm having the episodes of pain but there is always eventually some output. Once output resumes I'm treated as a pain management case and turfed out home again.

I'm taking Oramorph when in pain, Ondansetron for the constant nausea, and Lyrica twice a day. Bloods are normal, and I've had a standard abdominal x-ray which came back normal too.

It's not gallstones. The gallbladder was removed in the nineties.

I've had the ileostomy for 35 years and have had very few problems with it up until recently. I'm at my wits' end with this and spend most of my days in agony on the sofa. I can't sleep because of this too. About four hours a night if I'm lucky.

I did eventually get a referral to see a gastroenterologist after my doctor and the hospital messed up (lost in the post, apparently). I asked to be referred to another area because of the errors made and got to see a different doctor two weeks ago.

The consultant I saw was excellent and has organized a MRE within the next twelve weeks. A long time to wait though, and things are getting worse by the day. Output is tardy, my stoma shrinks to a very small size when I'm in pain and then returns to normal, my gut is constantly abnormally noisy.

I've experimented with food types and nothing seems to help. I keep well on top of hydration and salt levels because I've had POTS on and off for about a decade. I'm also aware that the opiate painkillers can constipate too.

The other question I wanted to ask was whether other ostomates get the feeling of a massive rush of adrenaline when the stoma is misbehaving?

That's a long post, but I'm getting a bit desperate.

Another trip to A&E by ambulance and exactly the same outcome as all of the other times. I'd taken the maximum amount of oramorph allowed to combat the pain. So gassy and I can't figure out why?

I'm scared to eat. Don't worry because I'm overweight and could do with losing some more pounds anyway. Gut sounds are constantly noisy and grumble all day. Sounds like an angry bear being poked with a stick. I always half expect to wake floating off the bed with my bag like a blimp as it did in my youth if I'd overindulged in the beer and spices (no pain in those days). There is very little gas coming through the stoma which seems odd. I noticed in the letter from the consultant that he suspects a sub-acute obstruction of some kind. Again, has anyone else experienced this?

More IV morphine given, another standard abdominal x-ray and bloods taken (all normal) in the A&E. The morphine tripped me out and then they sent me home to start the cycle of events all over again.

Does anyone feel as if they could spark out or get very dizzy after eating even a small amount of food? Blood sugars have been tested regularly and they range from 4.5 to 4.7. Within normal range.

So many questions. After 35 years of going it alone and avoiding support groups, these current problems have made me realize how important forums can be.

Sorry for the second post so soon after the first. This is driving me crazy

It sounds to me exactly like an obstruction of some kind. I think it is essential you request a scan which shows up things much better than an X-ray. You cannot go on taking morphine as it is harmful to peristalsis which could make any obstruction that might be there much worse. I think you are being neglected by your GP/hospital/etc. and should demand that a different kind of investigation is carried out, e.g. the scan I just mentioned.

Your symptoms sound very much like my own trouble way back in the late seventies and early eighties which resulted in me having a section of obstructed gut cut out and the ends sewn together, which was called in my case an ileo-rectal anastomosis to cure Crohn's Disease. It certainly worked and I had no trouble until 2009, when I had a serious accident resulting in what was left of my intestines being ruptured, following by septicaemia and multiple organ failure, including cardiac arrest. Luckily I survived after spending 5 weeks in hospital but the price I paid was to have an ileostomy (which can be reversed when I am up to it)

I hope to hear further posts from you telling me what action will be taken by the NHS on your behalf.

Thank you so much for replying, Cecille, and for the useful information. Very sorry to hear about your own problems. It sounds horrendous what you've been through, and I hope things are improving for you.

I have my suspicions that there is some form of blockage in the gut. It has taken one hell of a fight with my GP and the original hospital that I dealt with to take this seriously. The appointment for the MRE scan arrived this morning, the 8th of January, which is very disappointing considering that I contacted the consultant directly by email to tell him that I'd been to A&E again. He said that he would try to speed things up. Still, I should be happy that there is some progression.

I really need to get sorted for the sake of my family. I have care responsibilities for my two adult children who have special needs. I think the lack of sleep because of the pain hinders me most. I can't function properly and spend a lot of time immobilized. That's really not fair on my husband, who is now caring for me as well as our children.

Sorry to vent my frustration on here. Many of the posts on this site have made me feel so very humble and grateful for getting through life with an ileostomy relatively easy for so many years. Thanks again for taking the time to reply.

I am not sure about Great Britain, but after my doctor tried to figure out what was wrong with me for a few months, he called me at night at home after another negative test and said I needed to go to the ER in the morning as they could get a CT test done much faster than he could on an outpatient basis. So I went to the ER, they looked at my doctor's notes in the computer and gave me a CT, found I was leaking into my gut due to an abscessed diverticuli and stricture. Surgery was the next day.

A year and a half later, I had a reversal done, but I am very thankful for my doctor and will not change.

Thanks for the reply, Mary Ann.

I think UK A&Es are only concerned by life-threatening conditions, which in a way, I do understand. I was at A&E again last night with exactly the same symptoms and unfortunately, exactly the same outcome. Sent home pumped full of morphine. They didn't even bother with an abdominal examination this time.

It's very frustrating. You have a perfectly healthy person telling you that January (the date of the MRI scan) is only a few weeks away. In the meantime, I dread every coming day and wonder if there will ever be any respite from this pain. As explained in previous posts, there is a low-level constant grumbling ache and nausea interspersed by periods of excruciating pain.

The thought of cooking or eating food is a nightmare and with Christmas around the corner, I'm absolutely dreading it. I've experimented with food to see if some things irritate the gut more than others. There is very little that I can eat without the gut flaring up.

Hahaha, three moaning and negative posts from me. I'm not normally like this (honest).

Ah well, hopefully all will be revealed after the scan. Never thought I'd ever be saying that.

I'm just exhausted and any sort of relief would be welcome.

Thanks again, Mary Ann, and sorry to hear of your troubles. Very glad that you had a positive outcome.

I am not a doctor and having taught general science and biology does not count, so take this advice with a large grain of salt and of course check with your doctor first. I have tried enzyme capsules but they do not work for me. A surgeon told me to take Miralax, or its generic polyethylene glycol and I found this works within an hour, or two BUT there is some controversy now with being it may have a problem with contamination of an ingredient found in antifreeze and down the road nerve damage so it's no longer recommended for children although my surgeon, also a mother, said she gives it to her kids as it does not have the side effects of other laxatives and is unique. The UOA does not recommend any laxative so get a doctor's approval. I have a parastomal hernia (second one) and adhesions that are likely the cause of my stoppages and I am looking at surgery which will also give me a new stoma. Due to my age and being diabetic and having had sepsis after past surgery including MRSA, I am very nervous about that.

In the meanwhile, on my own, I tried a probiotic that has loosened my output and so far I have had only a few instances of minimal blockage that I used the generic Miralax for. I was on acidophilus but that alone did not work and I still have fatigue which I had hoped that probiotic would help. The probiotic brand I am using with so far amazing success (along with diet) is Ultra Flora for Seniors. It claims to have thirty billion organisms and is formulated especially for seniors. One a day works for me. It may take some getting used to until normal bacteria are restored. Some may say this only works if you have a colon BUT remember if you have had an ileostomy for a good while it is said that it starts to take over some of the functions of your former colon.

ER nurses and PA's, even RN's, too often do not know the difference between normal constipation with a colon and a painful blockage from an ileostomy with adhesions and a stoma that can be dangerous if it is due to a prolapsed parastomal hernia. I wish the UOA would take a more aggressive approach in its recommendations for self-care as painkillers can make a blockage worse by slowing normal peristalsis. This could save a lot of expensive and depressing ambulance rides to an ER that may result in unnecessary tests. Again, you should consult minimally a colon rectal surgeon for their opinion. With the increase in ostomies, more education needs to take place for internists and gastroenterologists on this serious problem in my opinion. This sounds like a joke but it's not. In the eighties, soon after my first ileostomy, I had a horrible pain from a blockage and in the ER when I asked for an ET nurse everyone laughed at me. Not only did they not know what an enterostomal therapy nurse was, the movie ET was out less than a year!

An update.

Saw a surgeon at a different health trust last week who has arranged for surgery at the end of the month to remove adhesions which are stuck to the anterior wall of my abdomen. He also discussed repairing a hernia which also showed up on the MRI scan. The relief is more than I can ever describe. Really looking forward to eventually getting some decent sleep and not being carted off to A&E in an ambulance on a regular basis.

If you are in the UK and are experiencing problems, I'd urge you to keep fighting for proper investigation if your GP is reluctant to refer you. You may be feeling low and not able to fight your corner, but never give up.

The cliché "you know your own body" is often said and often ignored. I've gone from the suggestion of acupuncture for anxiety at one hospital (I haven't got anxiety. I'm in PAIN!), to proof of a need for corrective surgery at another. Sorry, if I sound slightly angry but I'm concerned for other people who may find themselves in a similar position.

I know that surgery on adhesions can be risky and that they can occur again but I'd rather risk it than spend every day in pain, drugged up to the eyeballs on morphine and unable to function properly. The chance to get my life back is something that I'm really looking forward to.

On a separate note, the surgeon said that he may re-site the stoma, depending on what he has to do. Mine was done thirty-five years ago and is sited on the right-hand side of my lower abdomen. I've noted that there is a tendency to site stomas in the middle of the lower abdomen these days. Are there any advantages to this?

Hopefully, I will get the chance to discuss this with him but I wondered if there were more advantages (easier to change the bag?, waistband and clothes issues?, easier to empty?, etc). So used to changing mine without much fuss or extra products (yes, I'm a luddite and still use Convatec with a separate clip) I was laughed at by a stoma nurse a couple of years ago for not knowing about all of the new products out there, but I pointed out to her that I thought the whole object of the exercise was to find something that you were happy with and live a relatively normal life. Up until the last sixteen months, that's exactly what I'd been trying to do.

Special thanks to Cecille who has been a great support over the months.

Hi there Moonshine. I have a loop ileo and have been getting some new problems and questions after many years of on again off again problems.

One line in particular caught my attention. "....as if you could spark out or get dizzy........". Sometimes I get very dizzy and have a huge rush of adrenaline right after eating even a small amount. The doc checked my sugars but said it was only slightly off. They thought it was just a sugar imbalance right at the point of eating which again became balanced within about a half hour. No particular food is associated with this, after candy, chicken, potatoes, etc., totally at random it seems. A bigger problem is when liquid or a bit of food goes into the wrong "Tube". The loop has the one tube going to my butt, disconnected J-Pouch and connected just for the blood supply. At night, I get horrible cramps. It seems to be coming from tiny food particles being sucked into the "Down Tube" going to my butt. This seems to activate the muscles in my abdomen and in my butt, and this causes extreme cramping and pain in my whole pelvic area. I had an MRI but it just showed the usual scar tissue and the narrowing of the anus and sphincter area. I get lots of fluids, mucus out my butt but no blood....so far!! It seems to be strictly a muscular problem. I'm in Ireland so I can't get the best medicine here (not until I go back) for the problem. I find that Motrin stops the pain and cramps.

I rarely have a serious problem with gas, except at night...naturally enough, everything seems worse at night, right? The air filters never work.

If you eat small amounts all day long, it should help. I often make a big sandwich and cut it into quarters (a long French Bread) so I have something in minutes if I get hungry. This way I can just have a quick snack without messy preparation so I'm more likely to eat when I need to. Now if I ate the whole sandwich, I would get this huge rush of adrenaline, my eyes go fuzzy, and I get dizzy....basically I have to lie down if I eat a full normal meal at one time. One sure Irish solution for gas and heartburn (often go together) is a "Thimble full" of Baking Soda in a small glass of water. This neutralizes the acid so that it does not produce gas in the belly. I just put a little dab on my finger and rub it on the very back of my tongue.

Not sure if this has any relevance for you but I'll post it anyway, never know?

Mountainbiker.

Hello Magoo

Haven't been here for a long time, but noticed a post notification in my inbox. Sorry that it's taken so long to reply.

I had surgery at the beginning of September to resolve the issues of adhesions and a parastomal hernia. Multiple cancellations of the surgery and overall, a very frustrating experience. I reached the end of my tether, but that's another story and not for this particular thread.

The adrenaline rush during eating is a strange experience isn't it?

I thought (like you) that it may also be related to the amount of food being consumed after long periods between eating, so I experimented by eating smaller amounts more often. In my case it didn't seem to make any difference at all, but I'm glad that you've had some success. It's difficult to give you any kind of feedback because I got to the stage where eating and drinking anything at all caused severe pain later on and as a result, I avoided eating and drank very little.

Yes, I know, a very silly thing to do and I did get admitted to hospital with dehydration a couple of times.

I wish I could explain my train of thought at that time, but I was not in a very good place (and constantly high on morphine didn't help).

I'm four stone lighter which in all honesty I needed, but the way in which it happened, I probably wouldn't recommend. Please forgive the 'dryness' of my humour. The whole experience has left me cynical and depressed.

Post surgery, I think I was expecting too much and am slightly alarmed that I still have all the issues with food that I had before (minus the excruciating 'kill me now' pain).

I've been referred back to the medical team and recently had an endoscopy which didn't throw up anything serious apart from a larger amount of bile and inflammation in the stomach and gut than they were expecting to see. Now just a question of waiting for various appointments and tests to happen.

PPIs prescribed and still on the morphine and ondansetron (although at a much reduced dosage)

Ho-hum, back to a low residue diet which is easier on the gut but so boring and not so good for output from the stoma. I find that I leak a lot when there is little fibre in the diet.

Others may have a different experience with low residue diets?

I'd be interested to hear about their experiences?

I used to love a poached egg on a slice of white toast but it becomes tedious when you're eating the same things over and over again.

I suppose it depends on how you view food?

Purely as a fuel, or an enjoyable and sociable 'experience'?

Many thanks for the tips. I'll try anything.

I had a panproctocolectomy in the late 70's and don't have a 'seventh planet' so I have no experience of J-Pouches, reversals, etc although I do get that phantom experience of still being intact, especially when I'm having gut problems. The rush of adrenaline seems to make it worse.

Whenever I've mentioned the 'phantom' feeling to various doctors over the years they've looked at me as if I'm insane.

Why not?

If you can lose a limb and still feel as if it's there, then why can't that be true of other parts of the body? (Just Googled it and it is a recognised feeling. Not amongst the doctors I've encountered)

The new stoma (it was resited and refashioned because of the hernia) barely protrudes above the skin after it settled down and I've had no end of leakage problems because of this. It's like learning to walk all over again.

Kind of miss my 'old friend' because over the previous thirty six years we'd gotten to know each other intimately and knew each other's little quirks. Until this one learns to behave itself I'll be anxious about leakage and whether it's going to behave itself when I'm out in public.

A new learning curve which isn't helping this battle with depression that I'm currently experiencing (and have been for over a year)

Thanks for taking the time to reply to my post Magoo and apologies to the other people who kindly responded and I seemingly ignored.

When I'm in a dark place, I retreat and try to shut out the world. The sofa has been my home (and bed) for close to two years now and I'm trying to force myself to get off it and do something (anything!) no matter how 'crap' I'm feeling.

Not the best strategy I'll admit, but the only way I can cope at the moment.

Many thanks

Moonshines63

Hi Moonshine,

I'm happy to know that someone else gets that weird rush after eating, sometimes. I figure it is some kind of sugar rush. I'm not sure if any particular food is involved. I've been losing weight since I developed my abdominal cramping problem. I have an appointment for next Thursday with my consultant, I need to see if he can alleviate this without removing my J-Pouch and the nasty operation involved. I get a lot of fluid coming out also. Flagyl helped this in the past but is less effective now. I think that some food particles get sucked into the small intestine that goes down to my butt and this stimulates the abdominal muscles and causes the cramping.

Yes, I get that "phantom BM", feels like a spiked bowling ball up my butt!!! Then the cramping, in waves and then it goes away for a few hours. This happens about an hour after eating so I understand your reluctance to eat. But! You must drink adequate water or you will make things worse. I have water/juice with me all day long and just constantly sip. There are long skinny "filler" pieces of the wafer material which will reinforce the sides of your wafer. This helps with a stoma like yours. My stoma behaves very well and I got lucky, it's just right!

My favorite dinner is Japanese style noodle soup. I use lots of veggies and a little meat or chicken or pork. I cook the veggies for a minute in the microwave, the noodles just need boiling water. Lots of soy sauce or sweet chili sauce, tastes great. The main factor is that it is very easy to prepare. I find the noodles very easy on my digestion. The output will always be liquid, no matter what you do. There are little fluid absorption packs that you can put into the bag. This makes the output a little less liquid.

I tend to eat to live rather than live to eat!

One warning! Some people think that they can live on protein drinks exclusively...don't try it Moonshine!! Too much protein will destroy your kidneys. A friend in Cape Cod fell into that trap and she died during surgery last July. She had been weakened dangerously by her diet or lack of a decent diet. It was a surgeon's mistake that killed her (cut an artery) but she might have survived if she had been eating a bit more. I was in the US and was about to visit her when I got a text saying that she had died. The one thing you have control over is your diet so pay close attention to it...force yourself to eat if you have to!

I hope you had a nice Christmas and have a wonderful 2016...better than recently anyway!! All the best to your family. They will save you in a crisis, share with them about your troubles because they may not (do not!!) understand what you are going through. Only people who experience it can really understand your situation. They are not bad people if they get frustrated sometimes. The more they know the more they can understand and help you get through it. I know you probably don't like to overburden your family but they need to know why you feel as you do, it will help everyone involved.

All the best Moonshine, stay healthy and happy.

Eamon.

Magoo again, have a look at this info about Oramorph. This is a very powerful drug and can have dramatic effects on your intestinal tract. It should cause constipation or at least very slow transit in your belly. My brother's wife had all kinds of trouble while taking it. I got a few Valium 5 mg (only ten each prescription) and they seem to help with the pain. I only use one or two a week, save them for when I have to use them. Brufen also helps, Ibuprofen or the US Motrin. They work well on muscle cramps.

All the best, Magoo.

http://www.medicines.ie/medicine/3200/SPC/Oramorph+Oral+Solution/#CLINICAL_PRECAUTIONS

Hello Magoo

Again, it's been a while since I've been here.

Post surgery I did eventually get down to only an occasional dose of oramorph and was taken off virtually all other medications. Like you, I wondered if they were contributing to some of the symptoms.

Had a good month living life to the full (Nothing outrageous. Just getting out and about again) and then the problems started again.

Tried your recommendation of noodle soups with a small amount of veg and protein. It was very palatable, but unfortunately, it didn't seem to help. Also tried your little and often with even smaller amounts of food approach too. Still got the 'head spin' as soon as the food or liquid went down.

At the beginning of February I tried cutting out various foods to see if there was a particular trigger because I knew that the consultant would suggest this approach. Ha-ha, I've been gluten-free, lactose-free, caffeine-free, sugar-free and am back to a low residue diet.

My GP referred me back to the medical team because of the problems I was having with cramping, fermented output from the stoma (Guinness would be proud), continued weight loss (eleven kilos in a short timescale) and the lightheadedness came back (this time accompanied by pins and needles in the arms and legs).

Blood tests, Flagyl (in case there's bacterial overgrowth), another CT scan booked and nutritional drinks prescribed to try to curtail the weight loss. I have noted your warning about protein drinks but there is a dietician involved now and no doubt she'll be on my case if I'm being stupid.

Progress of a sort and I'm hopeful that they'll get to the bottom of this.

On the plus side, I'm finally embracing the new technology of the modern bags. Much nicer material, no clips, and better filtering.

There's hope yet for this former Luddite ;-)

I haven't read all of the threads because I'm not online very often, but did you get sorted?

Very grateful for your kind words and suggestions in previous posts (as I am to all of the contributors who've provided advice and support)

Warmest Regards

Moonshines63