Radiation Enteritis - I feel very alone

[CrochetDancer]

Hi,

I was diagnosed with radiation enteritis in April and I was in hospital over the weekend with another bowel obstruction. I also have two stomas (colostomy and an urostomy).

I was told in April that I would need an ileostomy, so I would have 3 stomas and this was reiterated over the weekend.

I am home now but I get a lot of pain with wind.

I don't anyone else who has 2 stomas, 3 stomas or radiation enteritis and I feel very alone and very scared.

Is there anyone else who is in a similar position to me? How are you coping? Are you having or had more surgery?

Take care all and sending you all love and good vibes,

Lisa x

[HarleyQuinn82 Community Pioneer]

Hi Lisa,

I’m so sorry your going through all this, I can’t imagine how hard and scary it must be. I’ve not met anyone with both a colostomy and ileostomy as it’s been one or the other 🤔I think there is a support group on Facebook and also a Twitter account but I will check and post details xx

[HarleyQuinn82 Community Pioneer in reply to HarleyQuinn82]

facebook.com/groups/1530646...

[HarleyQuinn82 Community Pioneer in reply to HarleyQuinn82]

twitter.com/colostomyuk?s=21

[Oonsy]

I'm so sorry to hear what you're going through. Have you looked at the bowel and bladder community website? They might be helpful?xx

[Beau63]

No you are not alone and sorry to hear you are suffering. I too have radiation enteritis from radiotherapy 25 years ago. I was diagnosed a year ago as I always though it was ibs but I’ve got so much worse this last year. I’m on a low residue diet but no surgery yet they said they it was a last resort as I’ve a lot scar tissue and a 4cms stricture in my ileum but I don’t know how much longer I can put up with this. I will need an probably 2 stomas with tube feeding aswell. It’s so scary. A group for support is PRDA pelvic radiation disease association. There are alot if people suffering with this you certainly aren’t alone.

[CrochetDancer in reply to Beau63]

Hi Beau63,Thank you for your reply and I am sorry you are in a similar boat to myself.

I am not even on a low residue diet, I am on a liquid diet (soup, yogurt, tea and water and Laxido). I am throughly fed up and extremely scared.

I have a colostomy and an urostomy and they want to put in an ileostomy and for me to have TPN. I haven't got any enjoy and what is the point. My stomach/gut constantly hurts.

The colorectal surgeon said that in 6 months it is his "intention" to go back to 2 stomas. Well intentions are all well and good but they don't have to live with it, plus they aren't treating the enteritis. It's crap. No one cares or gives a monkeys.

Anyway, thank you for reply and kindness and I hope you get better.

Lisa x

[Beau63 in reply to CrochetDancer]

Oh god how awful for you ! i feel too that they don’t give a crap I have to pay privately and they just don’t seem to want to know. They cut me off quickly when I have a zoom call and are quite condescending when I tell them how I’m suffering mine too is nearly every day I’m bloated stomach cramps nausea. They said they had discussed my case and would be in touch that was ages ago. I wish I had a surgeon who cared. same as you I can imagine. Just need some sort of quality of life.

[CrochetDancer in reply to Beau63]

Hi,No they don't care and I feel like myself (and yourself and others) are being experimented on. There isn't anything out there for treating radiation enteritis, so we are being experimented on.

It's all well and good sticking in another stoma but they won't be treating the enteritis and they won't listen to me when I tell them I can't tolerate TPN, the doctors and surgeons just think I am being awkward.

I know what you mean about the bloated stomach and trapped wind. It is horrendous. And the condescension and being treated like a naughty child. I doubt, they would be very benevolent if it was them.

I was to and fro A&E for 2 years with bowel obstructions before their diagnosed me and now I am wondering what else have they missed.

When I was admitted over the weekend (for yet another bowel obstruction) I refused to have a NG tube and they gave me the gaestro solution to drink. While it make me feel like crap, it did the job.

I am not getting over this latest bout. I feel so awful and very afraid and no one (doctors and surgeons) haven't given me any hope. The colorectal surgeon I saw in April told me to sell my car as I won't be having any use for it and forget about having a dog! Lovely man.

Anyway, thank you for replying, it does mean a lot.

Love and good vibes,

Lisa x

[Beau63]

Wow I hope you get some help this is awful how you ve been treated , if you need to contact me for a shoulder so to speak my email is [e-mail] xx

[CrochetDancer in reply to Beau63]

Hi Beau63,Thank you for your kindness.

As I mentioned, PRDA.ORG.UK put me in touch with the late effects team here in Cardiff. They contacted me and we had a chat and then the late effects team told men that they couldn't help me! I was distraught. How can the late effects team not help me with my late effects? It is stupid. I will be contacting PRDA.ORG.UK and tell them this.

All the consultants want to is experiment and not treat the enteritis.

Sending you love and good vibes,

Lisa x

[HarleyQuinn82 Community Pioneer]

PRDA UK have an ask the expert service, they may be able to put you in touch with someone for advice 🤞 xx

[CrochetDancer in reply to HarleyQuinn82]

Hi,I have a couple of months ago and they put me in touch the late effects team here in Cardiff. They contacted me and then told me that they couldn't help me because of my late effects! It's unbelievable.

All the consultant want to is operate and I am petrified.

Thank you for your reply and kindness,

Lisa x

[HarleyQuinn82 Community Pioneer in reply to CrochetDancer]

Oh gosh, that’s awful 😞 xxx

[CrochetDancer in reply to HarleyQuinn82]

It is. I have emailed PRDA.ORG.UK today and told them. They get money for late effects and to help people, not turn them away.

As you know, it's hard enough for us and when there are people who can help but won't, it's despairing. We wouldn't contact them if we didn't need to.

Lisa x

[Mariecapp]

I feel so bad for you. I have RE but I have not experienced having to have a ileostomy or colostomy. I really need to follow a bland diet, no dairy either. I have such a hard time digesting food. I have terrible pain all the time after a BM. I hope this improves for you!

[CrochetDancer in reply to Mariecapp]

Hi,Thank you for your reply.

I am sorry you are going through something similar to myself.

No one wants to help. I have pain in stomach and pelvic area. I am thoroughly depressed and really had enough. I am too scared to eat and when I drink anything I get wind which causes pain.

Then to top everything off the late effects team here in Cardiff told me they can't help me with my late effects! It beggars belief.

I will keep you updated with how I get on but all the consultants want to do is operation and put in a 3rd stoma and put me on TNP. No way.

Sending you love and good vibes,

Lisa x

[RoseTyler]

I'm so sorry you're being treated so unfairly by doctors who are meant to help! How frustrating! This condition is rubbish, innit?

[CrochetDancer in reply to RoseTyler]

Hi Rose,Thank you for your kind message.

All the doctors and surgeons want to do is operate, operate, operate and experiment.

I have read everywhere online and I cannot find anything which mentions 3 stomas.

I already have a colostomy and an urostomy and I don't know where they are going to put the 3 stoma (ileostomy). Not once have the surgeons mentioned a bowel resection, just a 3rd stoma and tpn.

Yes, this ailment is rubbish. We have been through enough with treatment and it's unfair we have to deal with this. I am annoyed with the cancer hospital because the area on my body they did the radiotherapy to is large. It is from my breast bone down to thighs. I had contained cervical cancer, so there wasn't any need to do radiotherapy to such a large area

And now, the late effects team who are at the cancer hospital tell me they can't help me with my late effects. Why are they there? What are they doing? Are to worried to take on more patients because it would interfere with their holidays and school holidays? This is why I have reported them. We only contact them because we need help and they are suppose to help.

Anyway, I hope you are okay and managing well.

Sending you love and good vibes xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[Radiationenteritis]

Hi CrochetDancer, I feel very alone as well. I joined Facebook hoping to find others with Radiation Enteritis. I have had it for 5 years. 0 quality of life. Hospitalized for another bowel blockage on 07/03/21 but it is still there and I can only drink clear liquids. My Colorectal Surgeon has ordered an MRI Enterography to see where the blockages are and to determine if I’m a candidate for an Ileostomy. However I don’t know when I’ll be able to get it as the only place I can find that will do it in my area requires I obtain my own contrast injection and bring it with me. The pharmacies I’ve contacted thus far don’t have it. Anyway I’m so sorry for all you are going through. I pray everyone with this horrible condition can be helped ❤️

[CrochetDancer in reply to Radiationenteritis]

Hello,First of all, thank you for your reply and I am so sorry you too are going through the mill and being messed about. We have been through enough with cancer and all of the treatments and now this. Which by the way, I wasn't told anything about PRD or enteritis or anything else. I would have the treatment but I would have liked to have been informed.

I haven't heard of procuring your own contract dye! I would have thought the hospital would do that automatically.

I was given gastrographin, which is a dye and shows up in xrays and it is also a laxative and that did move my obstruction but it can only be obtained from the hospital and the doctors/surgeons prescribed it there. I did look it up online and that told me the same thing.

I am too scared to even eat yogurt or soup and I feel drained and tired. I haven't got much strength and I don't know if it because I didn't sleep for days in hospital or I was so ill over the weekend or the enteritis.

The people on this site have been a great help and support which is more than can be said of my local late effects clinic told me they can't help me with my late effects! How awful is that?.I have reported them, they are there to help and get paid to help. I am so annoyed with them I am considering contacting my local press.

I am annoyed for you and your bowel obstruction still being there since March. That is terrible and why didn't they give you gastrographin? Or some other form of laxative? You can't live on clear liquids.

They don't know how to treat it and I feel we are all being treated like guinea pigs and being experimented on.

Please keep in touch and let us know how you get on.

Love and good vibes

Lisa x

[SissyFaye]

I have Bilateral Urostomies (2 stomas). No colostomy. In 2020 I had a cystectomy due to radiation cystitis. Initially I only had one urostomy but had to get second urostomy about 7 months later due to ureter damage and not being long enough to reach both kidneys. I have also had gastric issues post cystectomy (none of my doctors seem to be taking this seriously. I have repeated told all of them (gastro, uro, nephro, GP, etc) that it significantly impacts my quality of life. I have found relief for the debilitating pain and gas after meals (doesn't seem to matter what I eat or how much). I have found that taking a probiotic twice daily has significantly improved that problem. I'm about 3-4 days into taking floranex granules (there is a capsule as well). It also appears to help with lactose intolerance. I have Crohn's and it has calmed that down too. I am unable to do the biosimilars, and other autoimmune treatments due to urosepsis within a week following each treatment.

If you have any questions I can try to answer based on my own experience.

As an aside, my right stoma is a nice tall stoma. My left stoma is an "inny" (at or below the skin). I have so many issues with ostomy leakage on that left side one. I always clean thoroughly and use adhesive remover and skin prep along with a convex barrier wafer and a barrier ring. This works perfectly on the right "outtie" side. This frequently occurs at night while sleeping so I wake up soaked. Not pleasant at all. I use both reusable and disposable mattress pads. Any ideas?

[Bluegenie]

I have also found probiotics very helpful in managing PRDA symptoms. I take one sachet of VSL#3 (vsl3.co.uk) every day, mixed with Bio&Me granola (bioandme.co.uk/collections/... and either yoghurt or milk. I'm fortunate that my GP is willing to prescribe these sachets, as they are expensive if you have to buy them for yourself.