Recent changes

[RESPIRATION]

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?

[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 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 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 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 in reply to RESPIRATION]

Thank you, I'll have a look at that

[RESPIRATION in reply to RESPIRATION]

Thanks. It is a work in progress.

[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]

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 in reply to Gtuva]

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

[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 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 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]

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 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 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]

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

[MofromKentucky]

RESPIRATION, I've been waiting to reply to this post so that I could report the outcome of my treatment. I had the MR Enterography done and what they found was that the terminal ileum had a stricture that had narrowed so much I was only able to eat liquids, and bowel resection surgery was recommended. This was terrifying to me because I had been told 12 years ago that it's very risky to operate on radiated intestines. Fast forward to early October: surgery was performed, a 10 cm section of ileum and small section of colon were removed. Recovery has been phenomenal... They had me up and walking the same day, and taking daily walks, and the results are better than I could've imagined! I can eat again!! Im gradually adding more fiber and my goal is to eat salad again soon! Fingers crossed that adhesions don't form, but for now I'm running with the elation I feel from eating some of my favorite foods again!

I hope you are feeling better and have good results from whatever treatment you are receiving. We all know that with PRDA, it's one day at a time. I'm wishing you many good days ahead!

[RESPIRATION in reply to MofromKentucky]

Thank you for telling me about the success you have had with surgery. I hope that should the need arise I might have a similar success.