Severe pain

[BlueButterfly4]

I have been living with pelvic radiation disease, specifically radiation enteritis and radiation cystitis for many, many years. However, the flare ups I have are becoming more frequent (3 already in January) and increasingly difficult to get over. My symptoms start with severe abdominal pain at which point I have to go to bed. I then begin to vomit uncontrollably for anything up to 12 hours at a time. This is accompanied by severe diarrhoea. I shake badly and go between sweating profusely to being freezing cold. I now refuse to go into hospital because my local one seem to have no experience with pelvic radiation disease. I feel I am passed from consultant to consultant with no one willing to help me. I have no quality of life. I am housebound. My husband and kids suffer greatly. And just to top it off during my last flare, due to the vomiting I cracked a rib and tore the intercostal muscle. During a flare I wish I could fall asleep and not wake up. But I have to much to live for. I don't know if anyone can offer any advice or if I just want someone to hear me. Thank you for reading this.

[Blue_Hawaii]

BlueButterfly4

[Beau63]

Oh my goodness you really are going through it I too have radiation enteritis. I was throwing up once a week all night long then bed ridden the next day. I had an MRI scan and they found I have scar tissue and a stricture in my terminal ileum which is causing the blockages it sounds like you have the same I was advised to follow a low residue diet which by the way isn’t healthy. But my bouts of sickness reduced I had to experiment even on that diet too much stodgy food like white bread and stodgy cakes would block me up. So I don’t get the sickness anymore but I now have SIBO due to possibly the diet and slow transmit of foods. So I gave bloating gas cramps fatigue but at least I’m not sick. I can’t eat a lot only small amounts. Have you had any scans to see what’s going on ? I’m also on Aymes a good high calorie vitamin rich drink which helps maintain my weight.

[BlueButterfly4 in reply to Beau63]

Thank you for your reply. I'm sorry that this is something you have had to deal with. Can I ask if these episodes brought you pain and if so what did you do for it?

I have had so many scans I've lost count. I too have scar tissue and a stricture which causes small bowel obstruction. I have eliminated many foods from my diet. I do not eat wheat/gluten, seldom eat vegetables/fruit etc but these episodes keep coming and seem to be getting more frequent. I have been prescribed morphine for the pain but even this is not effective. My consultant surgeon (who has just retired) has said surgical intervention would be 'difficult and hazardous'. I am due to see my new consultant February 16th. One thing that has been mentioned is going onto a liquid diet permanently but I'm not sure how I feel about this.

[Beau63 in reply to BlueButterfly4]

Same with me they said to operate is too tricky. I was being sick nearly every week before I was diagnosed it just seemed to happen all of a sudden from being sick 4 or 5 times a year to every week. I still have cramps which come in spasms I don’t take anything for the pain I tried paracetamol, ibuprofen nothing stronger though. Just a hot water bottle. The pains go right round my back sometimes. I too feel like we are just left to cope with it. What do you eat in a normal day ? I don’t think I could cope on just liquids but if it gave me back my quality of life I would. At the moment I am suffering nearly every day with bloating, gurgling, wind that feels trapped and a very tender stomach. I can’t go out at night in too uncomfortable after I’ve eaten dinner. It’s just awful.

[jude-the-obscure Community Pioneer]

Hello

I just had an attack such as you describe - totally uncontrollable diarrhoea and vomiting. Left me exhausted and shaky. Had sausage rolls for supper with one glass of wine. Abdominal pain for several hours beforehand, I put it down to a high fat content in the meal and two too many sausage rolls. Hope this isn't a recurring trend

Took a lot of today to clear up! Hope it was a "one off" event!

No ready answers but I can empathise.

Have you seen my post about the new Late effects clinic in Bristol UK?

PS I get much the same effect from eating onions!!

Regards

Jude

[BlueButterfly4 in reply to jude-the-obscure]

Thank you Jude and I'm sorry this is something you deal with too. I have started to contact a couple of late effects clinics but no success so far as I do not live within the area. Can I ask how you deal with the abdominal pain? I have been prescribed morphine but it does not seem to help. In fact the only thing that provides me any sort of comfort is a simple hot water bottle on my abdomen and a small fan blowing in my face. I do however wonder how long my body will be able to cope with these episodes.

[Greenfingers20 in reply to BlueButterfly4]

Hi last weekend I had severe sbdominal pain right side, caused me to vomit too. Called 111 and was ambulance to A&E. Paramedics gave me IV paracetamol and comfort.-fantastic. Diagnosed blood in stools, hard stools blocking colon in places.

CT Scan tomorrow to see what's happening.

Suggest you go to A&E if another episode. Especially if fever.

Good luck. I've no doubt it's Late effects PRD, but needs attention.

[jude-the-obscure Community Pioneer]

So sorry you are having such a hard time. I sometimes use distraction - doing something absorbing or useful; I use a wheaten cushion heated up in the microwave as directed on the pack (beware of burns and fires!!) I take paracetamol and sometimes find one Buscopan tablet (hyoscine) helpful for colonic spasm. Best to ask your GP about medication however as we are all different. I take Colpermin and Mebeverine every day too again as directed by my doctor.

The best pain relief on Sunday night was the violent expulsion of stomach contents and colon wen I had diarrhoea and vomiting. That certainly relieved the pain! But not very welcome in the middle of the night!

I have a damaged descending colon which is twisted and distorted. Mostly it works quite well but I do have to consider what I am eating!

I will ask Zoe whether she could speak to you on the phone. She is based in Bristol.

Take care

Jude🙂

[accidentalcarnivore]

I recognize some of your difficulties. When I have episodes like that it usually means my small bowel is partially obstructed. It helps me at those times to ly down, take gravel and eat nothing until it passes. I have reduced these incidence by changing my diet. Avoiding fiber and foods that cause inflammation in the gut helps to reduce the frequency of these episodes for me

[RoseTyler]

I feel your pain. That happened to me last night :(. PRD is rubbish, innit?

[Bluebell86]

Hi BlueButterfly4,

I have only just read your post from almost a year ago. How are you doing currently, better I hope. You were asking about pain relief, it took me 9 years of complaining to get some help. I take amitriptyline daily for background pain but needed something for the bowel obstructions as the pain is intolerable and like you I sweat, go cold and shake and cannot handle the pain. I got prescribed fentanyl lozenges which I rub on my gums as I struggle to keep down water so can’t take morphine. I was very reluctant about taking it but needed to for my last few episodes and it did help a little but not as much as I’d hoped. I don’t normally go to hospital as it’s so hard to get there during an episode and I figured they won’t give me anything stronger than this in hospital anyway. I something feel having an NG tube to empty my tummy would help but think all the hospital would do is give me anti sickness and put me on a drip anyway. Did h have any new suggestions from your new consultant?