Nothing works..

[Ohthistoo]

Just a bit fed up.as my whole bowel doesn't work from lips to anus. I have oral thrush at the moment and I have waves of mouth ulcers. They run across my cheeks and in the back of my mouth/throat. I have lax cardia so the bottom of my oesophagus is floppy. Into the stomach I have gastritis and slow stomach emptying. My small intestine is tethered to the abdominal wall causing pain and tenderness. The food/chime sits in there. Into the large intestine I have slow/no peristaltic action with tenderness in the descending colon. Despite this I get deep bowel twitching at random times (a shit gastro said this is a sign of a very disordered bowel). I've got a midline hernia from intense constipation during radiotherapy. I have an upper left hand large incisional hernia from an adrenalectomy. I've got chronic constipation that requires 12 sodium docusate a day and a low/no residue diet. Finally I've got a retropubalis muscle problem that makes having a poo practically impossible.

#gaslightinggastro #fedup #uncomfortable #malnourished #constipation

[Blue_Hawaii]

you really are having bad time with this dreadful disease

My Heart goes out to you

Sending lots of hugs 🤗🤗🤗🤗🤗🤗

[Romian]

Rethink your low/ no residue diet. It causes more constipation. Sorry for your problems.

[Ohthistoo in reply to Romian]

It really doesn't.

[Romian in reply to Ohthistoo]

I am more prone to have diarrhoea or loose stools. I am on a very low résidu diet. I check the fiber content of everything I eat. Nothing more than 1.5 gr of fiber per 100 gr. portion. And it helps. Also fat makes me go to the wc right away. You might want to try a bit more fiber. I eat no raw vegetables and fruit as well. Good luck.

[Ohthistoo in reply to Romian]

I'm afraid not - I cannot eat any fibre as I am chronically constipated. Any fibre and I am painfully constipated with a partial bowel blockage. I get bunged up. I eat no fruit raw or cooked. No veg. No pasta. No rice. No bread. No cereal. I only eat fat - clotted cream and double cream, oil, butter, protein, dark chocolate. Cheese, meat, eggs and fish. That's it. Any fibre -sometimes I really want to eat nuts and I'm doubled over. I cannot eat any fibre. If you have diarrhoea and loose stools but also cannot eat fibre I would suspect it is due to partial bowel blockages and the diarrhoea is from seepage around a partial blockage. I just think you have to eat what you can bear and do the best you can. What works for one will not work for another. Best of luck to you too.

[Newseason]

Hi ,

You are really going through it and understand how difficult it can be.

All I can say and share my experience over last 2 two years post radiation damage.

Firstly I was seeing a clinical psychologist specialist in Oncology and long term health, as looking after my mind is and has been important.

After I self refured to late effect clinic, I went had 9 week of hyperbaric oxygen therapy 2 hours a day mon-fri having treatment in Plymouth. They are a charity will sometimes except NHS referrals. This helped heal my skin , also it works long-term effect internally.

Although I still have urgency, also I'm on a gluten , lactose free also low residue diet.

I eat very small meals avoid sugar except dark chocolate......got have some treats.

I have bile acid malabsorption take powder ,colestyramine, plus docusate to keep soft.

One thing helps not eating after 4pm as my digestive system is slow.

I get awful fatigue, so I choose carefully what I do.

Its been a very long journey, and life changing, lots to manage as I have other health conditions.

However the key for me is management ask for help when needed .

Plus I've talked to alot of Dr's,Oncologists, Consultants, Dietitians,Surgeons , Late Effects Radiographer... slowly found a new way of living with help of some clinical staff who have seen patients like us before.

I hope this helps I know not the same as your experiences.

Please do ask for second , third opinion from specialist.

Wishing you warm wishes 🙂

[Ohthistoo in reply to Newseason]

It really does help. I'm on 4th gastro. I have thought oxygen therapy might help. We sound very similar. I've had at least 2 mean gaslighting gastros who's impact has been incredibly damaging. I'm at the national bowel hospital currently but my symptoms aren't 'bad enough'. I'm rarely really incontinent and hardly ever in agony or vomitting. Services seem to focus on that end of the spectrum. For me the fatigue is the worst and also managing demands from my employer. 😬 - thanks for your reply it helped. X

[Romian]

I had abundant bleeding after radiation therapy for anal cancer. I was sick and anemic, so I got to have 60 cessions 2 hrs each of hyperbaric chamber oxygen treatments. That stopped the bleeding. And quite by chance I read that they discovered in Israel that the same amount of oxygen treatment lengthens the patient’s life on the cellular level, the telomeres get longer. So there is a silver lining to this madness.