Another blockage, sigh

I had another blockage yesterday -- not as bad as the one a few days earlier, but pretty miserable nonetheless. No rhyme or reason to this one. It was in the morning, I had output in the night and early a.m. Went swimming and for a walk, and then I ate a little bit and it started. I hadn't overeaten, had chewed well, was hydrated etc.

It cleared in about 4 hours and I felt fine afterward, but I'm concerned. No blockages at all for the first 16 months, and now 3 in the past month. (Well 2 in the past week). I'm still on vacation, will be home on Monday (other than the blockages -- Mrs Lincoln -- it's been a great trip).

Of course, I've been reading here, so I know all the things that could be going on..... are there tests I should be asking for? My surgery was lapro, so I'm less likely to have adhesions. I also don't think it's stenosis, as the problem is behind my stoma not the stoma itself. Any suggestions?

I have an appt w/my nurse on Wed, but probably need to be checked out more than that.

I'll catch up on your posts after I get back home (Monday)

thanks

Really sorry to read this :(. Blockages stink. I have had weird stuff going on too, but only in the very early am . . . getting the last of my dinner out. The really thick stuff is not coming out until last, and by then I don't think it has enough fluids to come out easily. I know you said you were hydrated, but what was giving you a tough time, last night's dinner or this morning's breakfast? I ask because it could still be hydration related. As much as I drink in the day, I know my body runs very low on fluids at night. Part of it is my fault, as I can't stand waking to pee all night. No matter how much I drink in the morning, it does take some time for my system to catch up. I don't clear out from the night before until 8 or 9 am. I only know this because I plan my showers around it.

Very sorry to hear about your blockage.. I am not sure if I have had one yet although I did have kind of a scare the other day. I went out all night with some friends and took like 4 immodium over a few hours and I had a lot of pain and air trapped. I didn't have any output for like 8 hours so I am not sure if that was one or not.

Blue are you feeling any better?

Thanks for asking, I am much better now. I was in SW Colorado and in New Mexico, and it is very tricky for people who are used to low altitude and humidity. My partner's family lives in Colorado, and I've been there several times, including last year, after surgery, and I was fine.... but it occurred to me that I was more careful about food then. I just haven't had any problems .... but I did have lots of veggies, cooked but crisp, before all three blockages.... perhaps that combined w/not enough fluids is too much.... it's a sad thought, as I love to eat veggies that way... but I hope it's that and not something wrong w/my stoma or scar tissue etc ....

I'm back in Massachusetts now, will be home tomorrow. Got up at 4 am today, so not at my best, hoping this is coherent...... thanks, really nice to be connected to people who understand.

Brian, I think immodium makes me feel just weird and it can be crampy..... hopefully it wasn't a blockage. My gi is always on me to take immodium more to give me a better shot at sleeping through the night (he has a young child and I think is projecting in emphasizing the importance of not waking up even for five minutes to go to the bathroom)..... I do wonder if it would help or hurt w/this hydration issue, though? Slows things down, so less output, but would it make a blockage more or less likely?

Thanks, Rosemary. I've thought of you a lot w/the blockages, thinking how awful it would be to have this every day like you did. I will talk to my nurse, hoping it isn't that.... seems like you'd been struggling a long time, though. My stoma really works fine almost always....

Blue- don't overthink all of this. Seems that it can easily be a combination of what you are eating and not being sufficiently hydrated on a continual basis. I think 4 hours with no output and some blockage pain isn't that big of a deal. I mean its really no different than a "coloned" person having a bit of constipation.

Try eating a little less "binding" foods, overcook your vegetables for now, and drink lots of true electroylyte drinks like Ceralyte or Jianas brothers WHO oral rehydration solution. Also I don't know what meds you are on.. but if you are on narco pain meds of any kind.. that may be slowing down your gut way too much. And don't do the immodium... it will slow you down too much also.

So relax, your body is still adjusting to its new normal and look at these experiences to help you figure out what works and doesn't work for you eating and drinking wise.

Blue.. sorry to make it seem that your problem wasn't a big deal. And I'm sorry the pain is bothering you with these blockages. I think part of living life with an ostomy is working through these type of things, learning from them, and not dwelling on them. Kind of like how you saiad keeping a food journal makes you feel like you are back in the "sick world". Maybe because I'm on my fourth ileostomy, I don't worry about every single thing so much and I try to accept what things are different for me now than when I had a colon or a jpouch. But since you are relatively new to this.. it is understandable that you are concerned.

For me, I think these episodes of partial blockages are just part of having an ileostomy, especially with the multitudes of surgeries, and hence adhesions, that I have had. I don't worry about going to the ER until I am truly vomiting and passing nothing at all out of the stoma for several hours. I also pay attention to my urine output. If that stops... off to the ER I go. But yes, at that point.. it is truly extremely painful. I ended up triaged ahead of a gunshot victim, immediately put on heart monitors, and injected wtih dilaudid with my first trip to the ER for a massive blockage. Guess the pain was so bad that it whacked my heart out! Anyways, now when I do feel a bit of a blockage coming on, I am right away working on my "get the guts" moving tricks - hot baths, heating pads, red wine, moving, twisting, massage, etc..

Also, if you were in high altitude you are deifnitely more prone to becoming dehydrated. So possibly that was an issue. I don't know much about vitalyte other than I tried it a few times when I had a very high output ileostomy and the "sugar" in it really wasn't good for me. I have been told by a few doctors that ceralyte and WHO solutions are the closest electrolyte replacements to what our body needs.

Also, possibly since you are feeling better, you are being more aggressive with the type of foods you are eating than you were say 6 months ago. Things like cauliflower and broccoli probably do need to be overcooked to eat. If I recall you were still dealing with wound healing issues pretty recently. So even though the wound is not in the stoma area, I do think healing does have an affect on everything in your body. So yes, I think your body may still be adjusting and figuring out its new normal.

Lastly, I don't know anything about your exercise routine or even abilities with regard to your healing. But I have definitely found that exercising greatly reduces my blockages or "semi-blockages." I think strengthening and moving that core somehow helps break up adhesions and keeps the guts moving freely. Also staying fit with a total exercise program, and cardio - like running, also has helped me tremendously.

So eat healthy for now, drink lots, cook your veggies, maybe stay away from some of the tougher ones for awhile, put your fruit in smoothies, and stay healthy!
Best.

fyi Just heard back from my surgeon who wants me to schedule an appt w/her and my stoma nurse within the next 10 days. She said they'd check for tightness of the muscle/fascia around the stoma, or stoma prolapse or hernia. I will mention stenosis too. Just feel better getting checked out.....

Good Morning, again!

Wow...I can't believe we are all "together" in this ileostomy world...but I am glad to be here with you all! Thank each of you SO SO much for writing here. I have gotten invaluable advice and feel so informed. I got little to no help from the stoma nurse when I had my surgery in March 2011.

I am not having any problems at the moment, (knock on wood!) but now am wondering when the next one might occur.

Thanks, and love to each of you!
Mollie

blue-
Swimming is good. That is how i have started exercising after each one of my big surgeries. I'm swimming about 5 days a week now and just started lifting weights and doing some yoga and pilates. I had my perm ileo and "barbie butt" surgery 4 months ago. Still need a big nap after any kind of exercise. I do tell my gym teachers that I had recent surgery and I will pace myself but I haven't figured out how to tell them I can pretty much do anything unless it involves "splitting my butt crack!" I'm doing a modified "frog kick' in swimming, keeping my knees glued together throughout the entire kick.

I have no clue when the perianal wound will heal and the pain will decrease. I have had several abscesses I had to go back in for another cleanout, etc. just a month ago. My doc has left it open to drain and said it could take another year. I feel horrid for what you said you have gone through with your wound so makes me feel like my wound problems are nothing.

One other thing I remember I do to help with the parital blockage thing.. is that I eat 5 or 6 times a day. So that prevents me from eating too much at once. Learned this from a IBD nutrition doc with a previous ileostomy I had. It really helps reduce pain, distention, bloating, and seems to keep things cruising through better.

ddd45, I know what you mean about trying to tell yoga teachers et. al about the nature of your injury. For a while I went to a restorative yoga class, which was helpful. I liked the teacher and took her aside and just told her exactly what the issue was. I think she was slightly mortified, but oh well. She did help me modify poses after that.

For others, I say I have a "wound in an unfortunate place" or just an injury that makes it hard to do X without going into details. On my trip last week, we went to an outdoor concert/dinner as part of my partner's family reunion (party of 55).... The seating was picnic tables, and they really don't work for me.... I was very hesitant, but I called in advance and just said I had an injury that made it hard for me to sit at a picnic table for a long time, and they couldn't have been more gracious. They have some tables where the ends of the benches come off; they reserved one for me w/a wheelchair sign, and I brought along a folding chair that worked OK for me, and was fine.

Sorry that you're having trouble w/the wound, wouldn't call it nothing. Although, for me, compared to being as sick as I was with IBD, it isn't that big a deal. If you're interested, a bit ago I wrote a blog post about coping w/the months of no sitting/bending -- a guy in my in person support group was facing a more extensive surgery for anal cancer, and I liked the idea of my experience being helpful to someone else http://tinyurl.com/c4no2pk.

For swimming, I use a pull buoy between my legs for the breast stroke, as otherwise I sometimes forget and do the frog kick (after 40 years of frog kick, it's hard to change).

I had an abscess after surgery too. I'd been home for a week, and I had been on pred for a long time -- spiked a high fever, and ended up in the hospital for a few more days. My surgeon came in at 10:30 pm to drain it; she said if I wasn't on the pred, it would have been an outpatient thing, but w/the pred, she didn't want to wait until morning. It's not clear whether the abscess was related to the wound not healing or not.

How deep is your wound now? Are you sure it's safe to swim? My surgeons said swimming in an ocean was great, a pond/lake was terrible, and a pool was somewhat in the middle..... really they wanted to wait until it was closed, but it was very shallow and I missed swimming so much that they let me go ahead.... I am very careful to wash w/hibiclens right after I swim and whenever else I bathe. Have not had any infections, fortunately. Do you know why you keep getting them? And why so much pain still? For much of the time w/my wound it hasn't hurt very much. Have you tried a wound vac? That didn't help me, but it has helped some people.

Brian84 is someone else on this list who has dealt w/a lingering butt wound (his has gone on longer than mine, but he's getting better too). Didn't really even know about such things..... oh well. Hope yours gets better in less than a year.

I definitely got careless about eating too much in one sitting, but the partial blockages have been a wake up call. Definitely aiming for smaller meals now. I see my surgeon and nurse on Mon next week, so will get checked out to see if there's anything physical going on. In any case, more care w/food is in order (for starters, no huge under-cooked stir fry's on hot days where it's hard to stay hydrated)

So sorry to hear you are having food issues suddenly. This is something that worries me. I can eat everything now, but I do sometimes wonder if some day this might suddenly change when an adhesion or something else pops up and causes an issue. I hope it is just a matter of a some fibrous foods mixed with dehydration for you and not something lasting. I do notice when I get dehydrated that my output gets much, much thicker. I have also gotten extremely nauseated from dehydration... not blockage related at all... just my body's reaction to a lack of fluids. I have never gotten the dry heaves but have come close.

Hope you get some answers soon!