Small bowel blockages

[RESPIRATION]

In the last year I have had multiple ambulance trips because of vomiting resulting from multiple partial bowel bowel blockages. The last time the emergency teams used an NG tube to suck up debris caught on a new partial blockage and I am now on a full fluid diet for the rest of my life. What other treatments have others had in this situation and did they work well? I think I may be facing the end of my life in the near future.

[Springsteen666]

That sounds awful and pretty much where I am currently. I am awaiting a referral to a supportive oncology team as my current gastroenterologist can’t move my appointment forward even though they have been asked 4 times in the last year.

My blockages are currently every 3 weeks and I have stopped going to a&e as they just send me home telling me to speak to my team but they of course won’t speak to me

I asked about a stoma as I am desperate as currently using my annual leave when I have a flare up. Apparently as the damage is in my small intestine it’s not suitable.

Can I ask is the liquid only diet helping at all? I think this might be my only option. I am dreading the thought but can’t go on like this. I have also mysteriously lost almost 3 stones but I put that down to the frequent diarreah that ensues after my blockage clears.

Hope you get more answers as sorry I am pretty much in the same boat

Julie

[RESPIRATION in reply to Springsteen666]

Yes, The full liquid diet does help, but it is far from perfect. I I need to drink throughout the day and never too much at a time or I have gut pain. I would be starving if I did not have advice from a dietitian experienced with this condition. Exercise helps. Sitting is bad, I think if I were to eat any solids at this point I would be back in the ambulance to emerg. immediately. The emergency team have been really helpful but they have said that if (when) I have another blockage they do not recommend surgery. That means death. I am in process of moving to a retirement home, largely to get my affairs in order so my son will not be burdened with the chaos of selling my house etc. I have had my three score and ten and am ready to accept this, but still wonder if there might be some miracle that I don't know about.

[SpaghettiBetty]

Everyone will be different as it really depends on the root cause of the obstructions (strictures, adhesions, ischemia, etc).

I had multiple obstructions and ended up having an emergency resection and a ileostomy. They would do surgery in an emergency, trust me, I’ve been there! I can pretty much eat anything now and don’t have to restrict my diet.

I would seriously urge you seek the advice of a gastroenterologist and/or colorectal surgeon. Ideally one who has expertise in dealing with irradiated bowel. Are you in the UK? The PRDA have a list of late effects clinics that specialise in PRD.

Hope you get some help soon x

[RESPIRATION]

Thanks. I'm not in the UK and think the UK is considerably ahead of us in Canada.

[Sunflower1976]

Hi There

That sounds like you’ve had quite the time of it. It’s so difficult with all the side effects we have. Through my after care and my PTD diagnosis I was issues an anal irrigation system that I have to use every day for the next 12 weeks. I’m not sure if that would be of any help for you but might be worth asking the question.

I wish you well and hope you find a solution sooner rather than later 🙌🏼🙌🏼

[MofromKentucky]

Hi, RESPIRATION,I'm so sorry you're dealing with this. My experience is similar, the obstructions started shortly after pelvic radiation. I was told to stop eating completely until an obstruction cleared, go on a low fiber diet (which did help) but the obstructions got more frequent over time. Last year it was so bad that I also went on a liquid diet.

The good news for me is that I was able to have an MRI and it was determined that there was a large stricture in my terminal ileum (small bowel), and that I was a candidate for a bowel resection. The surgery was scheduled, very successful - I had it in October and I am doing great!

I highly suggest you get a second opinion, as great strides have been made in this field. The US is way behind UK in recognizing PRD, but there are some wonderful gastroenterologists that do follow and keep up with it. I hope you can find one.

Good luck to all of us - unless you've ever experienced an obstruction you can't quite appreciate the level of pain that comes with one.

One more thing; I work in the medical field and appreciate all of the doctors that have treated me, BUT:

YOU MUST BE YOUR OWN ADVOCATE. ALWAYS!!!

[RESPIRATION in reply to MofromKentucky]

Thanks. I appreciate your advice. I have been dealing with this for 15 years. The issues have changed over time, but the incomplete blockages in the small gut have only become apparent within the last year. Perhaps there were some developing before that but were not previously visualized. Repeated x-rays and CT's have demonstrated increasing numbers of the incomplete blockages, the most recent about a month ago. I am 75 which may be significant. Surgery was mentioned as possible with a future blockage but not encouraged. I am now on a full fluid diet. Perhaps I should request a referral to a gastroenterologist. My family doctor will request referrals when asked but never initiate one. I have a follow-up appointment with a hospital physician who may see things differently.

[RESPIRATION]

Thanks. I appreciate your advice. I have been dealing with this for 15 years. The issues have changed over time, but the incomplete blockages in the small gut have only become apparent within the last year. Perhaps there were some developing before that but were not previously visualized. Repeated x-rays and CT's have demonstrated increasing numbers of the incomplete blockages, the most recent about a month ago. I am 75 which may be significant. Surgery was mentioned as possible with a future blockage but not encouraged. I am now on a full fluid diet. Perhaps I should request a referral to a gastroenterologist. My family doctor will request referrals when asked but never initiate one. I have a follow-up appointment with a hospital physician who may see things differently.

[MofromKentucky]

Please do go see a gastroenterologist! Or, even beyond that, go see a gastro surgeon! When my blockages started 12 years ago, my gastroenterologist didn't have any hope for successful surgery. But over the years he started working with a gastro surgeon and here I am. Btw, I am 64. The surgery was almost completely painless with zero complications.

[RESPIRATION]

Thank you very much for this. I will look into it.

[Lamados1954]

your experience sounds horrendous respiration we all on here have some side effects from treatment but reading yours is very upsetting and puts my symptoms low down on the scale (if there is one ) ! You sound very stoic and preparing for the worse this makes me so sad for you . Thankfully I have not had blockages as you describe but part of my bowel is paralysed so I have to manually evacuate a few times a day as the tumour is still in my pelvis as they couldn’t operate it’s painful and makes me nauseous if i have any waste is my bowel . I hope the fluid diet helps it doesn’t sound pleasant but if it avoids blockages . I read on here that a member carries out bowel washouts everyday which stopped his visits to A&E with obstruction which he was having frequently have you tried this ?

[Gtuva]

I have had obstructions for decades, most end up with vomiting. If I vomit too much I end up in the ER to get rehydrated, probably every two years on average. Sometimes I am admitted for bowel rest and I suffer through the NG tube experience. MRI tests show no particular area of stricture so I now believe mine are caused by lack of peristaltic motion resulting in constipation that blocks up the entire system. I would normally try two rounds of a suppository enema and that would get things going again, maybe 80% of the time. Recently started Purcalopride and after three weeks it seems to be helping a lot but it’s a little early to declare victory. Haven’t had a serious blockage since starting and I would normally have at least one every week. Also take two 100mg docusate pills 2x per day, seems to help prevent the constipation blockages.

[RESPIRATION]

Thanks for telling me about your experiences. I am learning about how variable experiences can be. It does sound like a peristalsis problem. Mine is definitely because of scar tissue causing partial blockages so far. If your gag reflex is like mine that NG tube is a nightmare..

[Gtuva in reply to RESPIRATION]

Have you investigated taking pentoxifylline with vitamin E? Studies have shown reductions in radiation induced fibrosis which is why I’m on this protocol.

[accidentalcarnivore]

I’ve had 13 yrs of small bowel obstructions. What is the liquid diet you are on if you don’t mind me asking. I’m 71 now and sometimes feel this life isn’t worth the effort. But then the obstruction passes, diarrhea for a few days then I forget and carry on. If half my days are good enough, then life is worth it

[RESPIRATION in reply to accidentalcarnivore]

The diet I am on is a full fluid diet. However, the full fluid diet that I was given on leaving the hospital was designed for a temporary diet ---I think 7 to 10 days. I realized this was not going to work. I had been told I must continue on the diet for the rest of my life. Fortunately, I had worked in health care and knew some dietitians who recommended a couple of companies who might have the expertise required. One did (Nutriprocan). The person with the expertise was in Alberta, the company was in Ontario, Canada but due to the wonders of the internet I was able to communicate with her by phone and Zoom and she provided me with a diet I can live on. Basically everything that goes into my mouth has to have been able to go through a sieve. Some things work better than others. It still takes trial and error. How were your blockages managed? I am guessing they were not complete blockages.

[accidentalcarnivore]

I’m not sure I manage that well. I rarely go to emerg any more. I stop eating and drinking once the pain and vomiting comes in. I use gravol and morphine. I stay laying down to keep the pressure off. My diet is mostly animal protein, very little fiber. Lots of water. Yoga and movement when not in obstruction. Abdominal massage. I was advised to drink 6 ensures a day and give up food. I don’t like the crap in ensure. I eat small amounts several hours apart. I will look up that liquid meal . I’m in Canada.

[accidentalcarnivore in reply to accidentalcarnivore]

I just checked the website. I misunderstood. It’s just dieticians. U thought they had designed a new liquid meal replacement. All the ones on the market are full of sugar and vegetable oils . They’re all sickeningly sweet. Puréed food doesn’t work for me. I’ve obstructed in smoothies and yogurt. Dairy, pasta and foods that are sticky are problematic.

[RESPIRATION in reply to accidentalcarnivore]

I think I may have addressed this before. Over the years I have found some success with a low FODMAP diet and chose high soluble and avoided low insoluble fiber. I thought meat would be easier as I read somewhere that meat became soluble in the small bowel, but I certainly can't handle meat now unless it is so finely pureed and sieved that it cannot be separate from liquid. The Bullet blender does a good job. Overeating is disastrous. Exercise does help. Sitting upright is bad. Lying flat or walking help. Thin smoothies are good, thick ones bad. And the amount of sugar I end up eating is gross. But Kawartha ice cream is pretty good, if sweet.

[accidentalcarnivore]

i developed BAM/BAD about 6 years ago which further complicates the eating and eliminating issues. Did you get that condition too? sugar really makes it worse.

[RESPIRATION]

No. I am thankful.

[Vailgirl]

I am reading through all the replies I am also 19 years out from my radiation for anal cancer. I have had all the similar experiences as everyone and as you mentioned. Things getting worse, and I finally went to a really good homeopathic Doctor Who suggested I go on a congee diet. That has helped tremendously. I sometimes get minor obstructions, but have not been to the in over a year! Look up recipes for congee and I would suggest starting slow and adding in some oils to keep things moving through. The Congee is filled with moisture that sits in your intestines and sees into the lining. My small intestine is extremely narrowed, but this is still able to get through. And now I am able to add other sometimes things get blocked up, but I have not had to go to the hospital

[RESPIRATION]

Thanks, Will give it a try