Hi everyone, my family don't like discussing the details of my like with a stoma, they understand I take medication, have to eat regularly, drink carefully and when I say I need a loo, it means now! Apart from that it's the old fingers in the ears, la la la routine! So what was going to be a post asking for advice has fortunately turned into me sharing what the family considers too much info as I come down from my panic stricken, adrenaline fuelled 8-9 hours.
I have a fairly active, high output ileostomy of about 3 months old. I take 14mg of loperimide 4 times a day to keep it under control, in addition to the odd jelly, jellybabies and marshmallows. You get the picture?
So today I had my breakfast and went to yoga, thinking ita little odd that there wasn't much to empty before the class. Had a banana en route home, did a few chores and had lunch of last nights leftover sausage and mash.
Settled down with a cuppa, 2 dogs and the remote control for my afternoon rest. Again thought it odd that I've not had to empty my bag. Then I started to feel nauseous and had tummy and back ache - for the ladies it felt like period pain. My output was dark water with some very dry solids around 2pm.
Throughout the afternoon the nausea and tummy/back pain continued, no further visible activity from my stoma. A fair bit of gurgling was audible. I tried to keep drinking to keep hydrated and lubricated!
By 5.30pm I started searching on here for guidance and consulted Dr Google. I took anti nausea meds and oromorph for the pain. I changed my bag to have a look at the stoma, it was pretty swollen.
Stupidly I ate dinner of fish and chips (not usual for us but hubby had driven our son to Derbyshire from Herts/Beds border and was exhausted when he got home). I now know that Ian suggests fish and chips to thicken output so not the ideal choice tonight!
Still no change to output, or lack off. Swift exit to bed by hubby when I mentioned A&E if this continues. More googling, tummy massage, rolling around on the floor and drinking lots of St Mark's fluid.
10pm microwaved the heat pad in preparation for bed. Thought I should change my bag again to check how it's looking. My stoma looked double its usual size so I cut the hole in the bag larger and luckily had sticky "donuts" to pack out any gaps. Before I bagged it again I thought I'd massage directly around the stoma, which I did for several minutes before it spluttered back into life. Starting with the dark water with a few very dry solid bits. Then gradually the activity increased dramatically until it was like an explosive chocolate fountain!
Finally the pain and nausea are subsiding. Tea and enhanced squash have gone down well. I think I've been lucky this time. I really thought I was off to A&E a few hours ago. I think it must have been my Alice of homemade tea bread/fruit cake. I soaked the fruit for 24 hours so it was softùýàGO
Hi Dawn
Thanks for sharing your story, I for one do not think we can ever have too much info on coping with a stoma even although "Bum crappers" think it should be taboo to talk about poo, it's our take on toilet humour.
I am pleased that by doing nearly everything by the book you spared hubby a trip to A&E.
So what did you miss out, the warm bath of course and you kept eating but you managed albeit with a lot of pain and discomfort to get through it, so a big well done, hopefully it will be your last one.
You know that you don't have to remove the pouch to view your stoma, most pouches have a split backing to make inspection easier.
Is your stoma still swollen I would suggest keeping an eye on it over the next few days and maybe think about having your stoma care nurse check it over and remeasure the size for hole cutting. Most members know that I'm not a great fan of precut pouches and prefer to cut my own but after my last hospital stay, for want of a better word, have been "persuaded" to have my pouches precut as I have a large funny shaped stoma, although I do intend to keep a box or two uncut ones for emergencies.
Advice - if you ever have a problem with a box of pouches contact the manufacturer (not your supply company) for a replacement. Problems do occur in manufacture or you may receive an old box. In hospital over the weekend I discovered that I had been given a faulty box by hospital stoma nurse who didn't believe my explanation of the fault until she tried it herself and had all my pouches replaced directly by the manufacturer. Problems I have experienced over the years range from the side seams not being glued together, the flange coming away from the pouch to the last one where the backing paper would not come away from the flange and after a lot of pulling it ripped the flange apart all the things we don't need in times of emergency.
Hearing your story made me think that no matter how old or how new we are into this journey we should all have a copy of what to do in certain circumstance and here is my suggestion (based on NHS advice) that we should all have in our supplies cupboard and emergency change bag the following
Stoma blockage
Some people develop a blockage in their stoma as the result of a build-up of food.
Signs of a blockage include:
If you think your stoma is blocked, you should:
When to get medical help
After trying these steps, if there's no improvement within two hours, you should contact your GP or stoma nurse immediately as there's a risk your colon could burst.
Or go to your local A&E department
Preventing a blockage
To reduce your risk of developing a stoma blockage:
Also, avoid eating foods known to cause blockages, such as corn, celery, popcorn, nuts, coleslaw, coconut macaroons, grapefruit, dried fruit, potato skins, apple skins, orange pith, and Chinese vegetables like bamboo shoots and water chestnuts.
My fellow ostomates you've read the story of would you like to share your story with the rest of us, your information of today is someone's life saver of tomorrow.
Thanks Dawn for sharing your encounter and bringing us a little bit of humour but really I am glad it all worked out well for you and you can put in down to experience but what exactly did you have to eat that you think caused the blockage and when we know that we'll have the morale of your adventure called the day in the life of an Ostomate.
Thanks again for sharing.
Ian
Hi Dawn
As Ian, , has said this is the place to come to talk all things poo. I’m lucky my family and friends are very accepting of the poo chats and those that aren’t can choose not to listen I say!
Ian is right, you’re doing a fine job and no trip to a&e definitely means something.
If things are blocking for me I get a much more liquid output which is dark, sometimes dark green (bile) in colour. My go to , as advised by my stoma nurse, is a warm shower and massage the stomach and area around my stoma. I sit or lie in the bath to do this. The nurse had said have a warm bath but I don’t really want to be lying in poop water, so a shower running over me is my compromise. It can take a little while there to get things moving but it has helped for me.
Thanks for sharing and hope for no more blockages.
Best wishes
Thanks Ian and Cassie. I was going to have a bath when I first changed the bag around 6pm, but hubby was due back with dinner.... of course a bath, massage and lots of fluids would have been better for me than no bath and fish and chips!!
By 11pm I was getting rather worried and popped my heat pad in the microwave when I went to change the bag. My bags do have a clear viewing panel but I couldn't tell how swollen it was without removing the bag, I also wanted to change it for one with a bigger hole as a precaution. I'm glad I did as I think my massaging directly round the stoma really helped.
So far I haven't had any pre-cut bags as we were waiting for the stoma to settle in size. My May delivery was a complete nightmare, it should have been pre-cut but stoma suddenly decided to shrink alot so the nurse said she stopped the order, I went in with a new template for her to check and send off. A few days later I received my order with the wrong size cut - they'd carried on with the first template. So nurse did a new template which she sent off that day. I received a couple of replacement boxes but the angle of the hole was reversed so I couldn't use them. By this point I was panicking as it was Friday before bank holiday and we were going on holiday! I picked up some uncut boxes from the hospital when I went in for chemo that afternoon. Nurse sent off another template together with a bag with the correct hole cut.
We had asked for delivery this week when we got back from holiday. After much chasing on Tuesday I was told that my doctor wouldn't sign off the prescription because it was ordered too soon - this was 3 weeks after I placed my May order and I still hadn't received anything useable! We agreed I'd get some uncut boxes from stoma nurse to tide me over, then I'd place my June order on Monday. Well, lo and behold, my replacement May order arrived yesterday but was again wrong! I now have 10 boxes (100 bags) which are totally unusable!! They've got one final chance from me to get it right. I discussed at length the size and angle and emailed them a photo of a marked up bag...... watch this space.
I intend to keep a month's supply of uncut boxes at home at all times, but ultimately I do want them to pre-cut for me as the cutting is very painful because of arthritis in my wrists and thumbs. It is so infuriating and has caused me lot of anxiety, especially this week and I have lost trust in the stoma nurses and the supplier (Fittleworth).
Fingers crossed everyone!
Hi Dawn
You have my sympathy and you highlight why I don't like precut bags but can understand that these are a must for people who have arthritis in their hands as you do.
I have always preferred to manage my own supplies and do my own ordering and sending the prescriptions off to the supplier of my choice, and I've used them all. It took me exactly two months to dispense with the services of Fittleworths.
What's going to happen to the wrong pouches that have been charged to your GP as they are no good to anyone else and I don't think that charities would want them.
What a waste at approx £45 per box.
I now use Securicare Medical and I am fortunate as I am looked after by a manager and everything works well for me and I would suggest you exercise your rights and change supplier as soon as possible.
Life living with a stoma is not an easy one.
Hope everything improved soon as I certainly will be watching this space for the continuing saga of your pouch adventures.
If you didn't laugh what would you do?
Can't wait for the next installment.
Ian
Hi
Glad to hear you made it through the blockage OK! I was diagnosed exactly because of a blockage, and it was not a pleasant experience. And if you can't get the issue with the bags sorted, don't feel guilty about changing to a new supplier. It is important that they get this right.
As for not talking about poo: Before my resection operation I went to have my hair cut, for the first time going to the hairdressers in my village. Walking up to the salon the bag had inflated a little, and in those early days I was still in the habit of occasionally touching it. So when I sat down the hairdresser asked how far along I was (obviously thinking I was pregnant). I laughed a little and explained to her. Imagine my shock when her next words were: "my sister has exactly the same thing". We had a great conversation about bowel cancer and stomas, and she kept saying to me that we should talk about poo more.
In the office I was fairly open about it, and everyone in my immediate team knew I had a stoma. There was one incident where we had a meeting right over lunch time, and I was shovelling in food just as we started the meeting. Obviously the stoma then let out a mighty roar minutes later! Everyone had their heads down, staring very intently at laptops, notebooks and such. Until I piped up and said "Serves me right for eating my lunch so fast", then they all burst out laughing!
All the best,
Yolande
and
Thank you Ian and Yolande
You definitely need a sense of humour to get through this. It did fail me on Tuesday when I was fighting with Fittleworth at the same time as trying to get a pre-chemo appointment which should have been made as a matter of course when my chemo was booked, on top of that chasing prescription for stoma support garments, chasing work and occupational health re my ill health retirement application, recovering from travelling back from France at the weekend, preparing for a visit from my brother and sister in law, and being a wife and mother! Far too much for one day (had to cancel my brother).
I will certainly be looking at alternative suppliers to Fittleworth. They did call me yesterday to discuss my template so I'm hopeful that they'll get it right this time. Funnily enough the first ones they cut do fit over my swollen stoma so I can use a few.
I have been assured that the cut pouches will be sent to developing countries to be used. We've just got to take all the boxes to the hospital this afternoon.
I spoke to my stoma nurse as my plumbing has settled down but the stoma is still very swollen. She said this is normal for 48 hours after a blockage - is that your experience? She said that if it happens again I need to seek medical advice if I vomit, also that you don't need to drink more than normal.
I'm pretty certain my blockage was caused by the fruit cake. I thought it would be ok as I'd soaked the fruit. I had a small piece on Wednesday after baking and was fine, the a whole slice yesterday... no more for me!
Off to chemo. Have a good day all x
Hi,
The same sort of thing happened to me about 3 weeks ago.
My stoma was swollen and I was in a lot of pain when I moved. At first I thought it was a parastomal hernia.
I went to A&E and was examined and had a xray and it showed I was constipated. The surgical doctor also examined me and prescribed a suppository and to take Laxido. Then they tried to get blood and 14 puncture marks later they did and after being in A&E for 10 and half hours, I got my blood results which didn't show anything, I went home, with an incredibly bad back after sitting on their chairs.
So your not alone and it's easy to say don't worry because I do worry.
Glad, like me, your okay and thank you for sharing.
Lisa
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