Recent changes: I had radiotherapy and... - Pelvic Radiation ...

Pelvic Radiation Disease Association

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Recent changes

RESPIRATION profile image
16 Replies

I had radiotherapy and brachytherapy 15 years ago for an endometrial cancer that had metastasized to the pelvic space. I had bowel symptoms almost from the beginning of treatment and a couple of months after treatment stopped passing stools. The radiologist recommended Senocot . It helped for awhile but I began to have bouts of vomiting finally resulting in a stage 4 esophageal tear. I was able to find a very knowledgable Dietician and about the same time found information on an IBS site. Following and IBS diet and watching FODMAPS I did quite well for many years increasingly pureeing difficult vegetables in soup. In about 2021 I had impacted stool and on my doctors advice began to the use the laxitive PEG 3350. This helped but I needed increasing amounts of this until December 2023 when I stopped passing formed stool. With increasing amounts of PEG 3350 I was able to pass liquid stools but was sometimes incontinent and had periods of vomitting. In emerge with x-rays and CT scans several partial blockages were found cause by narrowing of areas in the small intestine. Now what? I find exercise, Tai Chi, massage of the gut, drinking large quantities of water help along with Peg 3350 but incontinence is a major problem and I vomit. Now what?

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RESPIRATION
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16 Replies
Hopeful-one profile image
Hopeful-one

Hello Respiration. I read your post with interest -I'm so sorry to hear of your problems. I fear that I am also heading in a similar direction with bowel function. My treatment was in 2009 and I too have had increasing difficulties since. I have gone from having uncontrollable diarrhea for years to about a year ago finding my bowels have slowed right down and I have got constipation. I suspect that I had partial blockages earlier in the year as 'fluid filled small bowel loops' shows on CT. If I don't take laxatives regularly then the bowel ceases up and I can't pass stool at all- I use mining enemas sometimes but also have ended up at the minor injury unit getting more powerful laxatives to unjam things. I worry where all this is leading.....

RESPIRATION profile image
RESPIRATION in reply to Hopeful-one

What are mining laxatives? I don't recognize the term. Friends are keen for me to look for surgical possibilities at highly regarded cancer clinics in other cities or countries. But surgery is questionable on radiated tissue--and I am 75. I am looking for changes I can make in food, exercise, daily life changes---trying to find a knowledgeab,e dietician. Having some success with massaging the gut and drinking fennel tea.

Hopeful-one profile image
Hopeful-one in reply to RESPIRATION

Sorry that should have said mini enemas! Predictive texting for you:(Yes fennel tea is good- and nice! I also like fennel and mint mixed. Sainsbury's own make.

Good luck with dieticians. I don't know where you live but Clare Shaw at the R Marsden Hospital is v good, though I saw her years ago so I'm not sure what setup is there now.

I'm not sure what surgical options for these sorts of problems could actually be, and I understand your concerns about surgery on irradiated tissue, far from straightforward I'm sure.

Sadly no magic solution, really good luck with it all.

RESPIRATION profile image
RESPIRATION in reply to Hopeful-one

I am continuing to pursue self abdominal massage. For others interested check out Belly massage on Web MD. Very clear instructions

Hopeful-one profile image
Hopeful-one in reply to RESPIRATION

Thank you, I'll have a look at that

RESPIRATION profile image
RESPIRATION in reply to RESPIRATION

Thanks. It is a work in progress.

Lampshade111 profile image
Lampshade111

sorry to hear about all your problems after radiotherapy. I had prostate removed left incontinant two years later had sling fitted which worked very well but unfortunately psa went up eight months later and had to have radiotherapy which made my incontinance worse than ever nearly two years on from that waiting for another operation for incontinance. Unfortunately I think it’s a bit of a merry go round they fix one problem and course another it’s good they keep cancer at bay but unfortunately have to live with another problem less dangerous I hope you find a happy middle ground good luck .

Gtuva profile image
Gtuva

Have you tried purcalopride or linaclotide? They are for IBS-C, unknown causes of constipation. Was recommended by a UK Dr. with experience in radiation damage. I’m in the US so of course they are expensive (~$600/month) therefore I’ve yet to try them myself.

RESPIRATION profile image
RESPIRATION in reply to Gtuva

Thank you. I will look into them. I am in Canada

JDKPA profile image
JDKPA

I have had multiple surgeries in areas that received radiation, with no problems except that surgery cause even more adhesions, which are a big problems for me. But age is another factor for me, too. I am just so sick and tired of all the things I am supposed to do! I could spend all day on them, every day. It is just exhausting, mentally and physically. Have you ever taken magnesium glyconate (sp?). I would call it, for me, a natural laxative. And we all could probably use more magnesium anyway.

Best wishes.

Gtuva profile image
Gtuva in reply to JDKPA

Talked a look at magnesium citrate. For laxative effect, at least for me, it’s much more effective than Magnesium glycinate. Taking magnesium glycinate has no laxative effects on me so I take it to boost my low magnesium levels.

JDKPA profile image
JDKPA in reply to Gtuva

I tried magnesium citrate years ago but it gave me awful side effects. Now a take mag glycinate plus Caltrate (calcium) to achieve some kind of balance.

MofromKentucky profile image
MofromKentucky

Hi, RESPIRATION,This exact thing is happening to me! Radiation treatment 12 years ago, followed by constipation, so I use Miralax daily and eat low residual foods. Recently the obstructions have gotten much more frequent, and I'm pretty much eating a liquid/pureed diet. I do have an MRI scheduled in 2 weeks to see what has changed and what the options are. I haven't heard of the medications you mentioned, but will definitely be looking into that. I'm also in the US and I'm happy to have found this website, but also disappointed we don't have the after effects clinics I've seen mentioned here.

Please keep us posted about your progress!

RESPIRATION profile image
RESPIRATION in reply to MofromKentucky

I am having some success with doing abdominal massage twice daily 10-15 minutes a day. It doesn't have the nasty side effect e.g. vomiting that laxatives do. I'm trying to reduce the PEG 3350 (chemical name for Miralax)

RESPIRATION profile image
RESPIRATION in reply to MofromKentucky

I will be very interested to hear your results. I have never had a complete obstruction but imaging a couple of weeks ago revealed several incomplete blockages in the small bowel.. No treatment was recommended---and I continue to puree vegetables and fruit. I do eat small amounts of meat and fish without pureeing.

MofromKentucky profile image
MofromKentucky

Thank you. I'll have to look into the massage!

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