Tortureous life after Stoma Bag removal

Hi

Can I ask why the antibiotics? They are notorious for causing diarreah and don't quite see their benefit here, unless the docs think there is a long term infection. Not quite sure why they would arrive at this conclusion when it is more likely to be directly related to having part of your bowel removed. A few suggestions - proton pump inhibitors such as omeprazole - decreases acid release in the stomach and is used to decease stoma output. I continued mine after stoma reversal and it seems to stop diarreah and may well reduce the acidity of your bowel movements. Also try reducing insoluble fibre (roughage in bread, cereal etc) and increasing soluble fibre (e.g. Psyllium husk capsules) in your diet. May also want to consider tricyclic antidepressants (not serotonin reuptake antidepressants as they can cause diarreah) as they have an anti-cholinergic effect slowing down bowel transit. I take one psyllium capsule, two omeprazole tablets every morning and one loperamide every third morning. In the evening I take 3 tablets of imipramine. This gives me pretty normal bowel function. If I stop any of these meds it gets worse again. The use of omeprazole and imipramine for these conditions is not the norm but, if your GP questions it, tell them to look into the use of these two drugs for IBS. They seem to have benefit here and I have found this translates into benefit for anterior resection syndrome. Also avoid anything with artificial sweeteners of the polyol variety e.g. Sugar free products such as sugar free gum have these. Just might be worth trying some of these things - they have had a dramatic effect on my quality of life.

Best wishes

EdP

Thank you for your advice EdP.

As for your question why anitbiotics, my answer is SEARCH ME! My personal experience of the so called gatentrolgist specialist so far is they haven't got a clue. I could just be bitter and ungrateful but I have totally lost faith in the medical profession (including my surgeon). They seem to be happy to charge a fee and spend some time with you, but in return you get nothing but experiemnets that end up making your already impossible life even more complicated. The reason they have actually given me for using the antibiotics is that there may be a bacterial overgrowth in the small colon? That begs the question why would 3 different consultants give 3 diferent antibiotics? Anyway the less said about these guys the better as it makes my blood boil and doesn't help the main issues.

Can I ask you what you had done? I mean in terms of chemo, radio therapy and surgery. How was your sitiation and how did you suffer? How long did it take you to get to your current state?

I find life very hard to deal with right now and can't even look beyond the next hour constantly fearing another attack and ensuing paing and discomfort. i have been through so many different suggestions (each of which not only took time, but also added a new layer of compliction) I am afraid of trying anything new unless I know that it is tried and tested and will have a good chance of succeeding. At the moment I feel like those test monkeys in labs having everything thrown at me in case something stucjk.

Hi Maniraniam

First of all may I welcome you to the forum.

I am sorry to hear about your continuing problem. I had problems following surgery and found altering my diet really helped. I found that when I ate red meat I had dreadful pain, so I cut that completely out and eat chicken and fish. I also cut out spicy and high fibre foods. I found that porridge made with water and a spoonful of honey was good for breakfast. 

It was a lot of trial and error but it was worth it in the end.  I eat white bread, dairy, eggs and have gradually reintroduce green veg and fruit back into my diet.  I still have the odd bad day, but on the whole I cope quite well  

It might be useful for you to be referred to a dietician ask your GP about this. 

Take care

Lynne

Thank you Lynne.

many people talk about diet and although i am open to thee idea, I think back and note that nothing about my diet has changed, and the only thing that happened to get me here is the surgery. People say it is a combination of radio therapy follwed by surgery, but I don't nuy in to that eiether. Sure during the radio therapy I had serious trouble with passing stool and very severe burning sensations too (similar to what I am having now, but nothing near as painful). Also that problem settled a few months after the therapy had finished, and the new problem appeard right after the stoma bag was refused. Sure they have removed 20% of the larger colon, but how does that equate to scidic burn? It just does not make any sense. I am convinced they did somehing else, and although this sounds completely stupid. I have a feeling Apendix may have something to do with. They had mine removed at the same time because they said it was a useless organ and that it is better out now than having to remove it later.. All I have ever heard in life is that the Apendix are a useless organ in the human body, but considering how complex our body is, I am sure it serves a purpose, and who knows this may be one of the functions? I am very keen to find out how many people who suffer similar problems like my also had their apendix removed at the time o the surgery?

I am desperate to get my problem resolved, but even more desperate to find out what is the real cause so that i can help prvent such cruelty for the people that follow us.

PS. You are the second person to speak about Porridge and water, so I am definitely going to give that a go soon :)

Hi again Msniraniam

i had my appendix removed some years ago. When I had surgery to remove the tumour in my. colon they also removed the valve between the large and small colons. This valve I understand removed water from your food as it passes through your digestive system. 

I was advised to have a low fibre diet after surgery, which is quite common when you have had part of your colon removed. 

Your cancer specialist nurse should be able to help and support you through this.  You can also phone the macmillan help line.  The number is 0808 808 0000 and is available from Monday to Friday from 9:00am to 8:00pm and you can ask to speak to a nurse.  

Take cate

Lynne

Hi

I had a low anterior resection so top two thirds of rectum and most of sigmoid colon removed. I did not have preoperative radiotherapy but chose to have postop chem on a 5FU regime without oxaliplatin even though I was considered low risk stage 2. I had a temporary ileostomy which was reversed about 7 months after the original surgery. Like most people I did have a rough time with my bowels for a considerable time after the reversal. I would say it was about 3 months before things started to get manageable and then things probably continued to improve for a further 6 months after that. Things can improve for up to two years after reversal though so you still have considerable time. 

I hope things improve for you but don't be afraid to try new things. Check with your surgeon or GP first though.

Best wishes

EdP

Believe me I fully sympathise! My original op was in September 2015 and the ileostomy reversal in Feb 2016 and I've been through much of what you describe. I've commented to the colorectal nurses that, at 3 am when I've been up all night going backwards and forwards to the loo, that a ticket to Dignitas would be a wonderful thing. I won't bother describing what it feels like as you know only too well!

I was told that it may take a couple of months, possibly up to a year for my bowels to settle - well it's pretty well 18 months and I'm still not right but I can say I'm vastly improved - here's my thoughts.

I really don't understand the antibiotics at all. There's a lot of research going on at the moment (finally!) on gut flora and antibiotics are basically a way of screwing over the essential 'friendly' gut flora. I'm not a specialist in this area of course but I've done a lot of reading up and I do have a bioscience education and the whole gut flora thing is enormously important. Best to do some background research yourself.

Hunting around the web I found that the set of symptoms of LARS (Low Anterior Resection Syndrome) were pretty close to those for IBS and one of the treatments for IBS is a low FODMAP diet. I've found the low FODMAP diet has made massive improvements, cutting down on the wind in the 'wind & leak' sessions I've gone through. Not a complete fix but it's definitely helped.
I had to badger my GP to get seen by a low FODMAP dietician as it's recommended that you do the diet with the assistance of a professional dietician. Owing to a c*ck up I got sent to a weight-loss clinic instead but, fortunately, the dietician was FODMAP qualified so I managed to get on her specific clinic.

A consultation with a Diagnostic Physiologist showed up that I have an over-sensitive rectum and that my pelvic floor muscles had lost tone so I managed to get seen by a physio at a continence clinic and am now spending ½ hour every morning doing pelvic floor exercises and these seemed to have helped a lot.

In terms of drugs I'm on 4 Loperamide a day - ½ hour before breakfast, lunch and supper plus one at bedtime. I'm told that Loperamide is a remarkably 'safe' drug so I shouldn't be concerned if I have to take it long term. The Loperamide definitely helps

I've been trying to get bowel irrigation (Coloplast Peristeen) which should flush the lower bowel completely giving relief for 24-48 hours but at the moment bowel irrigation systems are 'under review' over costs throughout the country and I can't get it. My surgeon and diagnostic physiologist are arguing for it but it remains to be seen if anything comes of it ...
I have got a mini-irrigation system (Qufora Irrsedo) which I've had to get privately. It helps to flush the current load but doesn't stop the long multi-visit sessions as it only flushes the rectum.

All I can say is that I've come from where you are and now I'm at the stage of mostly down to going to the loo 3-4 times a day and using the mini irrigation system as and when it seems fit. I can now leave the house in the mornings and usually get a night's sleep and my afternoons/evenings are usually Ok. Even so, that's not predictable as I do get occasional relapses (like Saturday/Sunday) when I'm back to the multi-visit, sore bum, lack of sleep situation, but at least they're not the norm.

Given where I'm at my main problem is the lack of predictability/control which means I really don't want to travel far. Certainly the multi-stage journey to Crete that my wife and I used to do with it's attendant waiting around at airports and long bus journeys is currently out of the question.

I'd definitely recommend the low FODMAP diet, Loperamide and getting your pelvic floor muscle checked.

For more information search for (Low) Anterior Resection Syndrome and FODMAP diet

Hi there,

As someone else has already pointed out this is definitely "Lower Anterior Resection Syndrome" or LARS. I have also had it since having the stoma reversal procedure &, like you, have sometimes found myself wondering if I should have kept the stoma! I get the classic sense or urgency, frequent bowel movements (in my case more so at night), sore anus to the point of bleeding because I have wiped it so much. I also get feelings of being bloated. I have managed to gain some control using Loperamide to reduce the looseness of the motions & make the stools harder & more solid. In short, more like a standard or normal stool.

Hopefully things will improve & settle down in time. Because (like me) your bowel was essentially inactive when you had the stoma it now has to get used again to being fully functional. It will get easily irritated & will be more sensitive but hopefully things will get better. The burning sensations sound like soreness to me. Do you sometimes bleed? There are external creams & ointments that can be used to relieve these symptoms. Another suggestion is to refer yourself to your local "Bowel & Bladder" clinic who'll probably be more knowledgeable than your GP.

Good luck,

Graham

Hello Fudoka and thank you for your feedback. Although it is not nice to know someone else has been through the hell you are going, it is a relief to know that I am not imagining this and that the so called experts need to get re trained as their opinion isn't worth the piece of paper it appears on.

I am really not sure you have given me the answers i need, but at least there are a couple of new points I can look at.

I spent a week in hospital around 10 days ago. A complete waste of time in every way, except I accidentally discovered that by taking 5ml of morphine my night visits stopped completely. It was given to me to ease the pain, but needless to say it didn't, except by accident I discovered that it stopped my night toilet visits allowing me to sleep at least. I think the reason it works is that it relaxes the mind and the gut? They have said I can use it up to 4 times a day, but there is absolutely no way I will use it more than the once (don't want to get addicted for one thing, and besides if I was to stop going to toilet all day and all night, when will it all come out? Whatever it does, it works and for the past week it has been a life saver for me,.

Bile acid malabsorbtion seems to be the only thing they talk about when it comes to this burn situation. I have tried a couple of meds to do with that, and they didn't quite work. Although that could have had something to do with them giving me multiple meds at a time, so I may go back and experiment with Colesevlam once my body has settled down (I am in worse shape now than before I seeked professional help)..

The search goes on and hopefully either through a post or a miracle silver bullet from a proper expert we may get there.

Hello Graham. Thank you for your feedback.

Yes I do get some bleeding at the very height of the (what I call) acid drop. This used to come right at the end of sitting and it was a large amount of liquid drop which burnt like hell. It gave me the impression that it was burning my anal canal flesh which would have explained the appearance of blood (I wash myself after each discharge so I don't get bleeding because of over use of toilet paper (I would never have survived for so long if I used paper to clean myself after each discharge)). 

You may want to see my reply to the other user(s) as the Morhpin option may help you with your night toilet visits.