Sub acute small bowel obstruction

[David39]

I had pelvic radiotherapy some 40 years ago and have had chronic radiation enteritis and bile acid malabsorption for the last 20 years or so. Recently following a routine unrelated abdominal CT scan I've been additionally diagnosed with sub-acute small bowel obstruction, which I'm assuming is secondary to PRDA. I have no idea for how long it is has been present. Fortunately I have no symptoms that I can differentiate from the usual enteritis symptoms. Does anyone have experience of this additional complication, or can advise me what to expect in the future? I am concerned about it becoming acute, requiring an emergency visit to A&E.

[Romian]

I had an episode of small bowel obstruction 15 years after my first radiation, which didn't cause enteritis, just chronic diarrhea. All of a sudden I couldn't urinate or have BM and I had pain in the stomach. I drove myself to the ER and by the time they did tests, scans etc... it disappeared. Nothing since then, knock on wood. 3 1/2 years ago I had anal cancer and the radiation caused a chronic proctitis, more diarhea and an ulcer bleeding. I'm living in France now and I will see what they will do.

[janfarrugia]

I am so sorry to hear this. Unfortunately I have no advice to offer but hope you are able to get help

[Greenfingers20]

Hi David. I too have had PRD for 15yrs. Recently I had severe pain in my abdomen and at hospital had a CT scan. The Colorectal Surgeon was keen on double checking so I had an Endoscopy and Colonoscopy - physical and then virtual due to the blockage. There is a growth in my colon. I'm awaiting an urgent date for investigative surgery/potentially resection if found to be cancer.

I would urge you to ask for a colonoscopy if you are not offered it. I had some discomfort and loss of appetite in the last couple of months, but put it down to PRD again. I'm so glad the surgeon pursued it!

Best wishes for a good result after proper investigation.

[accidentalcarnivore in reply to Greenfingers20]

so sorry to hear of your latest complication. Wishing you best outcomes❤️❤️❤️

[Greenfingers20]

Needless to say I'm not an expert - only as a patient. I don't want to worry you unnecessarily, just recountig my experience.

[accidentalcarnivore]

Hi, i had tx in 2007 for cervical cancer. Starting in 2011, i have had frequent recurring small bowel obstructions that sometimes cause me to go to emergency for IV fluids, IV pain and IV anti nausea. They occur when i eat food. I have tried every restriction on food intact to try and control their reoccurence but the bowels are fickle and not always predicatable. What works one day or two, may not the next week or two. I have learned how to manage the bowel obstructions at home with morphine and Gravol. If it gets away from me, i still have to go to emergency. Fortunately, i have not had to have emergency surgery. I have been able to get it to pass by laying flat, taking nothing by mouth except the meds and a sip of water, and waiting for it to pass. it can take 1-3 days, after it passes, i am bloated and in pain and susceptible to reoccurence so need to be extra strict with intake. yes, i have seen GI specialists and GI surgeons, but fear the complications of surgery.

[Bluebell86 in reply to accidentalcarnivore]

Hi there,

I was reading your post with interest (& a huge amount of sympathy). I have read a few posts on here but your current situation sounds so much like my own. I have been prescribed fentanyl lozenges for pain relief as struggle to keep down water when I’m obstructed, it helps a little but not as much as I hoped. I would go to a&e more often but so hard to get myself there and last time they did an x ray and I really don’t want anymore radiation! Currently waiting on results of an MRI to see how much my bowels have changed in the 9 years I’ve had PRD, was told back them that I have narrowing and tethering of the bowel particularly the terminal ileum and rectum. Can I ask if you’ve been told that they would do surgery for you and if so what procedure? I’m not sure how much longer I can live like this. I’ve had 11 obstructions since January and the only thing my gastro can suggest is antibiotics regularly for bacterial overgrowth (which I don’t think i have as have no diarrhoea) and liquid diet. I am taking a prokinetic medication which does seem to work but feel like inflammation kicks in and my bowels just won’t work and like you I have to ride it out and starve myself for 3-10 days. Hoping your well currently and sending my best to you.

[accidentalcarnivore in reply to Bluebell86]

hello Bluebell, the GI specialist sends me to GI surgeon and he suggests opening up and exploring. So no guaranteed outcome. The risks of complication is high due to the difficulty of radiated tissue healing properly.

[Bluebell86 in reply to accidentalcarnivore]

Thanks so much for your swift response. I can understand your reservations with an exploratory operation particularly with the risks involved. Have you ever been recommended to go on a liquid only diet? That’s what they have proposed for me. I find it so hard to manage but can only imagine how you must be feeling after struggling with this since 2011. With my episodes I get such little warning as it’s not like I’m constipated the obstruction comes out of nowhere. Appreciate you taking the time to reply to my previous message.

[accidentalcarnivore in reply to Bluebell86]

Hi Bluebell, yes the obstructions appear to come out of nowhere. I have learned a little each time from various physicians and emergency physicians. A small bowel obstruction does not happen suddenly, it happens slowly as it takes time for the blocked area which is usually the distal end of the ileum to back all the way up to the duodenum (beginning of the small intestine). So an obstruction can start without you knowing it and you continue to eat the next day and suddenly, you are obstructed and in abdominal pain and vomiting. So i learned to track my eating back 2 days. Early warning signs are often, no BM one morning. If this happens, as i have BAM i usually have 2-3 hours of diarrhea each morning and if i don't have anything, then that is sometimes an early warning sign. Then i will severely limit my food intake that day to give the system time to settle down and to take the pressure off the digestive system. An obstruction appears to be caused by several things within a 24 hour period: 1. something i ate caused inflammation (potatoes, pasta/gluten, possibly) 2. bulk - eating large (relative) quantify at once 3. eating fibre. Yes years ago i was recommended to go on 6 ensures a day and to avoid food all together, this was said by a oncology dietician. I feel if i had followed this advice, i would be a diabetic by now and very unhealthy. Read the ingredients, sugar, vegetable oils and vitamins. Plus this is not a very practical way to live. I have met people on liquid only diets for life due to cancers of head and neck and they are not very happy people. I eat a mainly carnivore diet which is zero fibre, high nutrient value, fat for energy instead of sugar. I do find it challenging and boring as am the main cook for my family and they all eat vegetables and fruits and carbohydrates. Removing all fibre, veg, fruit, grains, legumes, breads, has allowed me to reduce my obstructions from weekly to one every 4-6 weeks. How do they still happen? Well, I find social settings are where i become less mindful of what i am eating and sometimes stray with a cracker or crisp or a bite of a cucumber and probably have more than i realize and bingo I'm sick in a day or two. Also I have noticed that stress really affects my digestion, inflames it and slows it down so it gets stuck. Hope this helps. Oh i also found a clinic that teaches abdominal massage to relieve adhesions in the abdomen. I was not able to attend but do practice this technique to assist the recovery from an obstruction. I also rely on yoga to assist my digestion.

[Bluebell86 in reply to accidentalcarnivore]

Hi accidental carnivore,

Thank you so much for your detailed reply I really do appreciate your input. It is so interesting to know about the two day delay (makes sense now you have said it) and I do think that the doctors should explain more about the anatomy to their patients as I have done all my own research, I feel that knowledge makes me feel more in control of it. I usually on average have 3-6 BM a day ( I take a prokinetic drug to increase peristalsis and stool softeners) but there are days when I may only have 1 or 2 and I do think “here we go again” so try to really limit how much I eat. Or sometimes I have diarrhoea so I think I’m still passing so I’ll be ok to eat. But like you say by this point I’m prob already obstructed. I was prescribed enema’s which I do occasionally use but my point to the gastro is that the blockage is higher (ie small bowel not rectum) so only elevates a tiny bit of pressure and I don’t want to risk my bowel being lazy by using them as obstructions are so frequent. I seem to get more sickness now each time and can’t keep water down and bring up lots of bilious vomit. It’s fascinating hearing about your diet, I don’t have fruit unless it’s a smoothie now and only have potatoes and non green leafy veg so perhaps I should cut down on potatoes. Smaller more frequent meals do help but not always practical when your trying to work. The gastro hasn’t recommended any supplement drinks (like you I don’t think people should/can live off those), he is due to see me in Feb for an urgent review and he wrote to me saying I could blend my current meals and they would be quiet palatable. Interesting about the massage (I’m trained in Swedish massage so I might have to research this further. I’m pleased to hear your frequency of obstructions have reduced however every month or so is still too frequent and must really get you down at times. Stress definitely makes me worse & find myself worrying about being able to keep commitments & this usually brings on an episode! Do you feel supported my your specialist or do you feel your at the point of sussing it out for yourself? Some people on here have spoken about St Marks bowel hospital (I live in Devon), have you ever been referred anywhere? Your experience must be on the worse end of the scale & would hope you qualify for specialist help.

[Bluebell86]

Hi David39,

My advice would be to ask your gastroenterologist about medication that keeps food moving through your gut to prevent the risk of an obstruction. I take stool softeners, they aren’t bulking agents but just soften the stool to make it easier for my bowel to pass, I also take prucalopride which helps with the peristalsis. It’s good in some ways you didn’t experience any usual symptoms however that makes it harder for you to manage presumably. Keeping really well hydrated is a big must too. Sending my best to you.

[JDKPA in reply to Bluebell86]

I have had many small bowel obstructions in the last several years with horrible pain and vomiting. Some (3) have resulted in surgery because of adhesions, which of course creates more adhesions! Sometimes I have been hospitalized and had a GI tube for days and days, which is my least favorite thing in the world, but preferable to surgery. There does not seem to be any pattern to these obstructions, so I just go about life, waiting...... A horrible way to live, but at least I am alive. It has been 10 years since I have had any chemo or radiation, but the side effects keep on coming.

[Bluebell86 in reply to JDKPA]

Hi JDKPA ,

I’m so sorry to hear you struggle so badly with pain and complex symptoms. Like you I seem to have no pattern with the obstructions, I recently took bowel prep for a sigmoidoscopy for suspected stricture due to these obstructions and the gastro said I would prob find my symptoms would be improved in the short term from having a completely empty gastric system and low and behold 2 days after this I was obstructed again so none of it makes any sense. They are now suggesting possible a colostomy bag. Do you mind me asking what your previous surgeries have involved? I’ve been told it’s unlikely I could have a resection sue to the lack of healthy tissue. I am only 36 so reluctant to have a permanent bag particularly if I’m still likely to have issues due to gastric immobility but not sure how much longer I can cope with the unpredictability if the episodes and pain. Have you managed to find any pain killers that ease your symptoms during an obstruction? I really sympathise with what you’re living with and wish you a lengthy break free from an obstruction. Be kind to yourself.

Best wishes

[JDKPA in reply to Bluebell86]

I seem to have missed your post...sorry about that. I find this discussion board hard to follow!

My previous surgeries include a hysterectomy 14 years ago to remove cancerous tissue and a re-do 2 years later for a recurrence. Non-cancer surgeries inclue gall bladder removal and 3 surgeries to remove adhesions (which of course cause more adhesions!) I have also had a full course of pelvic radiation and brachytherapy. I stopped radiation the second time around because I just was so sick. It was a gamble, but I have been okay in the 12 years since then.

Nothing helps the pain of the small bowel obstructions. I have usually ended up in the hospital with an NG tube in for several days ---ugh

[Bluebell86 in reply to JDKPA]

No problem, I have the same problem trying to follow posts on here too! I’m grateful that I get the chance to speak to others and I am very appreciative of a reply so thank you. I am sorry to hear you have had some many surgeries, it certainly seems to complicate things & as if having cancer wasn’t enough to deal with. I hope you are well at present.

[RESPIRATION in reply to Bluebell86]

Thank you. I find this series of posts very helpful. I have been through multiple stages of problems over the years. I now have several incomplete blockages of the small bowel. It's helpful to have more possible ways to manage the changes.