Two nights ago I was blocked up pretty good. Constant pain that was worse than labor pains, vomiting, and no output. Finally after the entire night of trying home remedies in the morning I started to go. I drank grape juice all day yesterday and was sore when I walked but the pain was gone. Today I thought corned beef hash might be mushy enough to eat and now I'm in the same pain, but not constantly. I can go to the bathroom but it's mostly liquid with residue. Did I block myself again? One person told me it's normal to be in pain for days after but that I shouldn't have eaten. Ugh. I'm so worried what's happening. I live on a military post so the Dr's here aren't specialized for a j pouch.
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I've had a few partial blockages. Warm baths, grape juice, Tylenol... Then things go back to normal. Yes, I was quite sore for a 2-3 days after. I would stick to a VERY "quiet" diet. Broth, Cream of Wheat, Jello, etc. Also, drink water,not Gatorade as it tend so speed things up.
obstructions suck. and yeah if you were obstructed for long enough it would hurt like heck for some period of time afterwards as your intestines/belly tries to absorb the beating it took during the blockage. the cured meat nature of corned beef hash might have been too taxing. I would think that as long as you feel sore, you might want to stick to as close to a liquid diet as you can. as the pain eases, then you might add more gentle foods as tolerated.
importantly though you need to think about how to deal with or preclude in the future. did you eat anything in particular, maybe something heavily fibrous that might have been the trigger. doesn't always have to be, I obstructed once because I inhaled an bagel egg breakfast sando, so speed of eating, and or lack of chewing can also be a culprit.
also if your obstructed for too long you risk intestinal perforation and all the nastiness that comes with, ie sepsis and risk of death, so please be mindful of that if it were to happen again to not necessarily hold out too long before seeking medical treatment. I am sure that even the docs at military post can treat a blockage. the jpouch would just be a new wrinkle.
my pattern of behavior changed after the first few blockages that ultimately took me to ER. I began to realize that as the bloat increased and I began to vomit it was time to go as the pain was only going to escalate. ironically a couple of times the vomiting actually helped release the blockage but for the most part it was an escalation in severity and a warning sign that more pain was to come and that if I didn't head into the ER soon enough for pain relief that I might very well choose to die, yes it hurt that much. and for all the bargaining I did with every known deity it was for naught. ;-)
You know, the first obstruction I really brought upon myself. My psychiatrist was really railing me about my low fiber diet weight gain, and maybe she thought I was a secret eater or something... I have no idea, but the weight bothered me too. So I thought maybe if I chewed well enough I could have salads and carrots and dip. I ate rabbit food an entire day, and by evening the pain was constant, strong and I thought I was dying. But I had never had a blockage before and every time I see a dr on post and I tell them I have a jpouch they ask to see it. Oh lord. I was scared what could happen there too! So I caused a pretty good blockage that first time. I did put a call into my gi clinic to see if I need to go in and at that point my Dr said unless the pain goes back to 10 with no output and vomiting I should be good. Then today I ate the hash. It's not as bad as the first time and I think you guys were right that I rushed the solids. But the waves of pain are scary. I just didn't know if that is normal after an obstruction or if I blocked myself up again. Definitely in the future I'm going to stick to the diet, and for sure I'll be on liquids for quite a while before trying gentle foods. This is horrible! Good points about the dangers of waiting too. I've had my appendix rupture so you'd think I would be really worried if anything like that could happen with an onstruction. I didn't even think of it. Thanks for the replys. It's been great to have people who have been there before tell me what to do, be aware of, etc...
Obstructions usually have *nothing* to do with the J-pouch. Obstructions caused by adhesions can happen to anyone who's had abdominal surgery.
I don't know but from my personal experience, as I haven't been on here much to have observed long term jpouch history across the patient population.
for me the first major SBO (small bowel obstruction) that led to surgery was arguably due to adhesions about 18 years out from my initial surgery. I was shocked at this but was informed that acutally about 20 years or so is the typical time frame for abdominal surgery adhesions to take hold. I was told that the more common adhesion problems were women who had C-sections 20 years later. fascinating.
eventually I developed two strictures in my jpouch and ever since then it has been arguably those that have caused my obstructions. logical to my mind as quarterly dilations of those strictures as well as med changes seem to have kept me out of the ER and other obstructive symptoms. but if you don't have strictures then you don't have strictures.
personally I avoid fiber like the plague, but I know some people including jpouchers seem to tolerate fiber. rabbit food to me, makes me think of shitting like a rabbit so while they are undoubtedly cute animals I'm not sure how much I want to be like them. the world as a whole loves to tell people to eat fibrous foods but my experience is completely opposite, apart from jpouch complications, structuring - pouchitis etc, I wonder how poorly my health is impacted by my dietary abstention from fiber. I think its not negatively impacted and while morbidly I do expect to die before the actuarial tables might suggest, I don't think it will be lack of fiber that will be the proximate cause. I run half marathons regularly for the CCFA, and I also push weights around the gym for giggles. I have noticed as I get older that the weight starts sticking around more, so abstentions from fatty food choices ie desserts, snacks etc become more important. that's how I battle the weight gain.
good luck to you figuring out your food choices, maybe more modest adjustments to see what works for you? I have often seen well meaning nutritionists who have zero experience with IBD, let alone jpouches virtually kill people with their directions, which might well apply to the average person, but remember we have jpouches here, so we are all above average. ;-)
I'm not sure we have much need for insoluble fiber (good stuff if you have a colon), but the vitamins and minerals in vegetables are pretty valuable nutritionally.
I know the world loves vegetables and we hear it all the time from all over, but I will say I unwittingly participated in a self experiment of not eating vegetables. in the last 30 years I have probably eaten the same amount of veggies that the average person would have consumed in 3 months. yet I have also in the past 6 years run about 15 half marathons and 2 full marathons. a good friend of mine who has done tons of research and tried many a different diet assured me that apparently one can get the vitamins and nutrients from other sources besides vegetables. I am no nutrition expert but I would suspect that my ability to run endurance events to completion would belie the argument that one must eat vegetables.
I bought some chewable vegetable/fruit supplements at GNC today actually! The pain of that blockage was enough to scare me into not wanting to try them again in the future. Today was the first day I ate a solid meal and it wasn't too harsh. Shredded chicken and egg dumplings. It was sore going past that stoma area, but thankfully bathroom jpouch habits after a meal were right on. I am only sore when I twist or reach or laugh, otherwise my abdomen finally feels normal. I've just been on liquids since the other day and honestly I thought I'd be hungry for more, but nope. I have taken it really slow and gentle. I think in the future I'm just going to consume mostly soft protein and some safe carbs. Prior to having all these surgeries I followed a paleo diet, and I think the only vegetable I'll keep in my yes list is sweet potatoes, and supplement the rest with these gummies.
glad to hear things are improving. we each have to find our own tolerances as the experiences seem to show wide variability, but I am loathe to fall into the media crazed concepts of must eats that often don't fully apply to IBD, let alone surgical patients.
I eat lots of nuts, seeds, and other difficult but high nutrition foods via smoothies, juicing, puréed vegetable soups, etc. I also cook/roast the hell out of cauliflower, broccoli and some other risky veges so they are SUPER soft but wonder sometimes if this is still risky. Making something like a cauliflower mash with garlic, with the consistency of mashed potatoes is another option. I've had serious obstructions, one that landed me in an emergency massive small bowel resection, very nearly took my life, and caused the loss of nearly all of my small intestine after my jpouch surgery, and since then have been able to find lots of safe ways to get vegetables - thank goodness because thats what I ate before. I don't do well on the white bread high refined food diet the medical team recommends. I can't do gluten or dairy as they cause hella itchy rashes on my legs and scalp. If you are willing to get creative krissimay78 you can still eat lots of great delicious vege dishes. (As an aside re grains, quinoa is a big no-no for me but I can do brown rice. The recommendation is for white though I believe.).
Also great idea on buying fruit and vegetable supplements. I havent done that in a long time and have thought about starting up again.
That's good to hear that works for you because I was wondering what would happen if I pureed my veggies or made cauli mash. I was scared it would somehow stick like gloop and block lol. The low fiber diet they recommend I was really scared to eat many things on it because they normally cause me migraines. Strangely though, since I have had the pouch they haven't. I wonder if it passes through the system too fast and maybe I'm not really digesting it.
Juicing is a wonderful way to get veggies. you'll need to add some fruit for flavor though. I personally have only juiced veggies with some grapes for flavor a few times and candidly found even the juiced outcome to highly stimulative to my bowels but for many this extraction of the pulp/fiber seems to be quite effective. and yes my transit seems to be extremely fast so much so that my doc allows me to have a full dinner the night before a pouchoscopy and merely plop in a fleet enema the morning of and I am magically spotless for the camera. I have heard that some docs including the docs at CC demand a more thorough cleanse for their scopes. I like to believe that's my one big bene for losing my colon, no wicked preps.
No doubt deweyj, when I'm looking for things to be grateful for in this whole medical adventure I've found myself in (with so little intestine) that's one of the things I note too! Prep is soooo easy! 2 fleet enemas the morning of, and I'm good to go! What a relief it is! I remember the nastiness of the gallon of goop I had to drink years ago and don't miss it a bit! (I don't remember at the moment, but I think my doctor has me limit foods the day before as well though...)
Re/ the juicing, I can totally see how this could increase output for some. Now having short bowel syndrome, I have diarrhea so many times a day, I never can figure out a pattern of what causes more/less output no matter how hard I try. If someone makes smoothies the fiber stays in and there is less of a sugar spike and more time for digestion (being that the fiber is there) - so this may be a good option for folks who find it moves things through them too quickly, instead of juicing.
krissimay78, hope you are feeling back to normal by this time. Blockages and adhesion related pain is no fun, and is something to take seriously. I can't say for sure because everyone is different and sometimes we get surprised, but I would think a smooth mash wouldn't be a problem once you are sure your blockage has passed. (If I had a blockage, I'd be on liquids only until I was sure it was passed though, then maybe advance to a mash/really soft foods to see how I did, then add meats and tougher foods.) If you are willing to put a little time and creativity in, you can find a way to eat in a way that works for you. I have gotten a little lax over the years and eat something risky every now and then (raw carrot, artichoke salad, etc) but every time I do I wonder if I'm making a mistake. Because I have so little intestine left to play with, it could be extremely complicated with high risks to need another surgery. I get on jpouch.org and am reminded that it's a risky game I'm playing and I need to get disciplined. I do really miss my raw vege's sometimes!
You may have had a partial obstruction still which caused the pain with the hash. Until your pain is completely gone (now or in the future), I'd start slowly slowly slowly adding new foods when it seems like time to see how you respond without too much risk.
And, to agree with deweyj, there are serious complications that can happen if you wait too long, so stay on top of your obstructions (like it seems like you are trying to do). By no fault of my own, this is why I now have short bowel syndrome and 36 inches of small intestine left (and no large intestine due to the jpouch surgery). Don't let that scare you, the risk of what happened to me is so crazy low, I just got lucky
Oh having this blockage scared me straight!! I've been still eating very soft foods although my stomach is mostly pain free now. Today it was a bit crampy but I drank some apple cider and had a rough go of it after that. Baby steps I guess!
Glad you seem to be moving in the right direction.
You may want to check out my post under J-pouch. I have experience so many blockages. I can tell you right now if it is adhesions it does not matter what you eat although nuts and popcorn may add to the problem. I pretty much eat what I want. I have talked to women who have had an intestinal blockage and they have told me it is like the pain of giving birth. If you start thowing up get to the hospital. LET THEM PUT IN AN NG TUBE!!! It does hurt going in but it is the best if not the only thing that will help. I have had so many as soon as I get into the ER I tell them to put a number 16NG tube down me 67 cm. I have even it done it to myself. I know from experience it may not be fun but instead of fighting it and ending up in the hospital from 3-4 days I now get out in 1 or 2. It has happened to me so many times I know all of the nurses on the second floor of the hospital and most of them know me.
lol I shocked an ER doctor once when I instructed him to put in an NG tube. I was in so much pain that I knew that was the one thing at the time that would help me. now I try to get there before I am that far gone and ironically believe that the IV dilaudid helps to relax my strictures ( that might not work for adhesions) that I have since had to have the ole NG tube. vomiting for sure is a sign that you MUST get to the ER.
What does the NG tube do for everything? It seemed like as soon as I started vomiting that's when I was finally able to start going to the bathroom. I'm still in terror from the whole experience! I'm just eating soft foods and tons of liquids!
NG tube helps alleviate the pressure of peristalsis stalled which is what causes the bloating during blockage. yes while vomiting is a clear danger sign that your body is finding its own resolution to the stalled peristalsis it can sometimes pop the blockage free. that's happened to me too. so I guess to amend my comment if you begin to vomit but get no relief ie don't start pooping, then its for sure time to get thee to the ER. because in my unmedically trained opinion your body's next step is to perforate in an attempt to solve the peristalsis stall.
Oh my gosh a perforiation would be horrendous. After I started to go I was actually scared of that because I still had quite a bit of pain. I was imagining my stool just wandering around my abdominal cavity. When I talked to my gi I brought it up and I think he thought I had talked myself into a fright because he chuckled and said as long as I'm going poo, don't have increased pain and no vomiting or fever I shouldn't worry. I see what you're saying about the NG tube. If I hadn't started to go my husband said he planned on making me go to the ER. I was really scared of the NG tube though, thus my panic and trying of at home remedies lol.
Intestinal rupture is *much* scarier than an NG tube, at least if you know what's at stake. The NG tube is acting as a pressure relief valve.
I didn't expect a NG tube and the nurses were pretty good about not giving me enough time to be scared of it. The one second between their telling me they were going to place one before actually doing it was so brief it was to my advantage. It was over before I knew what hit me. Although, I was in an emergency situation and if not I would expect more time for discussion and consent. But as it was, I appreciate the sneak attack.
I really appreciate the discussions in this post.
My father had his prostate removed by Dr. Karnes at the Mayo Clinic in Rochester, MN, 2.5 weeks ago, which was an ordeal as many doctors said they wouldn’t operate, in fear of puncturing the J-Pouch.
Thanks to God the surgery was a success, but he soon developed a lot of the symptoms discussed here and is currently in the ER, but will be home soon. I was very scared the doctor may have messed something up, but from what his J-Pouch doctor is saying, it doesn’t seem to be the case.
He’s been on clear foods and liquids for 5 days now and the nausea and vomiting has ceased. I will keep him on a liquids diet until he feels he’s “ready” for some low fiber options.
Broth, Cream of Wheat, Jello, and Grape Juice is what he’ll be having for his first few meals!
Any other meals we should consider?
Thanks a bunch for yalls help!
So sorry to read about your Dad. I’d get recommendations from the jpouch doc re/ foods to eat based on what they found to be causing the issues. Did they find an obstruction? Or possibly the medical team is making a logical assumption based on symptoms?
Best of luck to him in his healing.
Best of luck to him in his healing.
Hey! Thanks for your reply! Based on CT scans and symptoms they believe there’s no true small bowel obstruction and has had him on an all liquid diet. They believe his appetite will return sooner than later, as right now he doesn’t have much desire to eat at all.
At one point he was VERY nauseas and wanted to throw up (that combined with “10 out of 10” stomach cramps landed us in the ER. However, since going to the liquid diet, he’s been ok.
I’ll certainly get a list of foods they believe he should be eating now and will get their feedback on which foods to eat in the near future.