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JTVT
 JTVT
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May 23, 2020 11:03 pm  

Hi All,

Hope everyone is having a great holiday weekend. Wanted to know if anyone has experienced pressure and pain around your stoma, similar to that maybe when you sneeze or cough hard but more persistent. I feel like I have a full bag on all the time even when empty. This started fairly acutely a week ago and I thought for sure I would see a hernia but there is no visible bulge. Wondering if it could be a strained abdominal muscle around the bag. I get plenty of pressure and some pain and some minor prolapsing when doing things that increase abdominal pressure but nothing as persistent as this. Anyone have something similar and did it resolve? 


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john68
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May 24, 2020 10:46 am  

Hi JTvT, Are you still having normal output, if not it could be a blockage. I would discuss with your stoma nurse 


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JTVT
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May 24, 2020 2:28 pm  

Thanks for the reply, John68. Yes, output is normal. I’ve had an obstruction before and this is definitely different. Feels like an abdominal wall issue. My usual setup of stoma dome over 2-piece appliance under slim fitting work clothes now feels like too much pressure and just have this heavy, uncomfortable sensation all the time. I can mention it to my stoma nurse but it seems like as long as the stoma is functioning there won’t me much she can do. It seems with a stoma it comes down to if it’s working or not. If not, surgery vs non-operable issue. Likely just another annoyance  to deal with surrounding the stoma. My fear is this is a precursor to a hernia which I would live to avoid. 


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john68
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May 24, 2020 4:13 pm  

Just a couple of more points, how is the skin around the stoma as broken skin will feel under pressure when the stoma moves and also are you leaving a little room when cutting the wafer for the stoma too move 


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JTVT
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May 24, 2020 5:24 pm  

Both good questions. My skin has been holding Up pretty well though all this. I’ve had a small area of separation at the suture line on the ventral aspect (underside) since a few months post op but this is very minor and stable. There is a pesky granuloma I that area that bleeds profusely if I bump it but I try to to do that ;-). Overall, I feel very lucky that my skin has held up so well. I know others struggle. There’s a chance that I’m cutting the wafer too small as I’ve been trying to cover said area above to allow healing so maybe going overboard. My stoma is quite large and definitely swells quite a bit throughout the day. I’ll try to give it more breathing room and see if that helps. Maybe I’m strangling the poor thing (which is what I feel like doing at times!) Thanks so much for taking the time to trouble shoot! 


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VeganOstomy
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May 24, 2020 5:47 pm  

Hi @jtvt,

I would discuss this with your stoma nurse. Pressure for me usually means a blockage, but if you are familiar with that feeling and you don't believe it's related to a blockage then I would have a healthcare professional rule out anything else like a hernia or internal issue. 

Good luck. I'd be interested in knowing what the cause is once you find out. 


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JTVT
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May 24, 2020 6:10 pm  

@veganostomy

Thanks, Eric. I had an SBO a few months back requiring NGT decompression and I’ve had what I’m guessing are partial blockages that feel like they are just below the stoma with a ton of pressure and localized pain. It’s interesting as lots of people post about blockages and I always wonder which they are talking about. For me, the SBO (likely due to an adhesion per my surgeon) felt very different than those episodes of pain/pressure right below the stoma. The latter are very uncomfortable but are tolerable and have resolved after 2-6 hours. The obstruction felt like my guts were in a vice and the nausea started very early. Wonder if others have the same experience. This feels closer to the blockages but it’s more of a heavy feeling in a band across my central abdomen but worse around the stoma. Weird. I’ll let you know if I figure it out! I’m going to test John68’s theory of strangulation!

On another topic as I’m too lazy to start another thread...Anyone here with primary sclerosing cholangitis? Just diagnosed recently and trying to process the idea of another chronic disease. Figure there must be some given most have concurrent IBD. I’m particularly interested if anyone is involved in any clinical trials?  

 


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VeganOstomy
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May 25, 2020 10:17 am  

@jtvt

I've had a full blockage and several partial blockages, and I would say that they do feel different mostly because the total blockage also involved vomiting and the pressure was more intense for sure, but I've never had adhesions, so I would guess it probably feels different because of that too. 

Posted by: @jtvt

On another topic as I’m too lazy to start another thread...Anyone here with primary sclerosing cholangitis?

I suggest starting a new thread, just so people who aren't replying to this one can see it :)  PSC is associated with IBD, so I wouldn't be surprised if other members have been diagnosed with it. 

 


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LK
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May 28, 2020 6:11 am  

@jtvt...hi there! The...I may  be a tad late replying  here but in rereading your posts, it sounded familiar to me. Now, I hope this makes sense...going from the outside of my stoma in...I have  been diagnosed with a section of bowel directly behind my stoma, that is attached to my stomach wall and causes a kink in the bowel, then,  right behind that is a section of bowel that  has  become large....causing it to act as a sort of holding tank. Before that is another section that has so much scar tissue around it that it causes issues with flow of output into the larger section. 

Now, when my guts get going, they do not dance nicely with each other! Especially the bigger section and the kink! Grrr!! The bigger section gets a build up of output that causes a heaviness which  causes some nausea, and causes such a heavy pressure that  I have to lay down and practice mattress Olympics turning from side to side and back to front. The pain happens if a much  thicker output causes a blockage and the kink cannot find a way to let anything thru. But, that usually means a blockage of some one kind or the other. 

The big issue for me is keeping output soft enough for my guts to waltze foods right on thru to the stoma. The pressure behind the stoma  can make the area behind the outside my stomach wall look as big as a grapefruit trying to get out!  When that happens I gently massage my belly from under my ribs down to above my belly button but from one side to the other.That  horrid pressure is mighty confusing between a possible blockage or possible hernia feeling & I just have to go lay down &  try mattress Olympics to relieve whatever is going on. 

It took a few scopes and  an MRI with dye,  before a Doctor finally took a close enough look to find out what was really going on and then she explained it thoroughly to me, & drew pictures to explain it all to me. With short, short gut syndrome,  and yup, I said short  twice, I do not have enough gut left to correct the situation surgically, so I'm hooped for any surgical correction of the  situation. I was instructed how to keep output soft enough to flow but I also have learned to lay down  once a day for 1 1/2 to 3 hours to help my situation and the output and guts relax enough to allow output thru.   I also use Gas X to keep my fussy guts down to a dull comfortable roar. Gas behind a tight bowl and build up in a larger section stopped by an unmovable  kink is no picnic! I have  learned the difference between blockages and this heavy pressure. It has as you stated made  it  feel as tho my pouch was full enough to warrant checking on and emptying. 

So, there you have it. Part of my story of my miserable IBD guts.

I hope you can figure this out soon and remember that the powers that be may not think it is neccesary enough to find out what the issue is, but it is up to you  to let them know that this is "affecting your quality of life", (KEY  words to use when meeting with a doctor,) and that it is worth it to you, to go thru further testing to find out  what is  going on behind the scenes in order to live a productive  happy & normal a life as possible.

Sometimes Doctors need to be reminded  we have a life and responsibilities that require us to be as active as possible, right down to being capable enough to safely raise children if they are a part of the  picture. Bosses can be brought up too if need be reminding them they expect their employees to give 100% at work too,  and if you can't do that whether working or not, it is not unreasonable to expect a clear diagnosis of what is happening to you.

Sorry this is long. I  hate to see someone going thru these issues and not get the help they  pay for.

All the best, stay  safe!

 Linda 


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JTVT
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May 29, 2020 6:48 am  

@dlkfiretruck

Thanks, Linda, for the very thoughtful response. Can I ask if they were able to identify these dilations and kinks on MRI? I had an abdominal MRI a couple of months ago to work up my liver and they didn’t comment on any abnormalities with my SI or stoma. An MR is a very sensitive scan though it was protocoled for liver. That’s why I wonder if it’s abdominal wall or perhaps just some functional pain. It is odd as I’ve never really had functional issues before surgery and I’ve gotten back to eating nearly everything I did pre-op. Maybe that’s my problem! Need to back off the roughage a bit! The mystery continues. I post if I figure it out. Thanks again. 


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ChrisandBagpus
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May 29, 2020 7:19 am  

@dlkfiretruck

That is a very introspective reply Linda

I'm wondering if this explain the on going problem that I have with reoccurring bloating, gas an associated pains. I have been think if I had a kink or adhesion behind my stoma?

I will discuss this with my consultant in these difficult times its hard to get the doctor to look more broadly that their particular specialty.

You are so right key words are "affecting your quality of life"  one of the biggest issues in Medicine and often we are to slow in mentioning this as we feel we are complaining.


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LK
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May 30, 2020 1:59 pm  

@jtvt...ChrisandBagpus ...hello....Thankyou. I'm glad  to help a bit. In answer to your questions... it took a combination of tests.  MRI with dye. Ultrasound, xrays,  two scopes from one Doctor and the very thorough, rinsed cleaned out gut & well drugged scope  from my new doctor. Oh, and lets  not forget her very well practiced exam thru by stoma with her talented long fingers combined with xrays and scans at the same scope🔬 to get behind 😁 the matter! Lol! Thank God for good drugs and a doctor not afraid to use them and make sure her ⚖🥏patients are contentedly sleeping (knocked out cold) behind them. Lol!! Maybe this will answer a few questions.

If the Doctor ask for a MRI, Xray, ultrasound ect...and they specify liver, gallbladder...they look at the liver or gallbladder  only and usually closely. Nothing beyond unless training someone & they are good enough to take the time to  see the "whole" picture. It rarely happens as seen on Greys Anatomy! Lol!

I really have not made  a lot of diet changes since my stoma. I eat popcorn almost every night. I pop it in oil & find the oil makes the shell brittle enough to crumble in my finger tips.  I'm a firm believer in roughage being a cleanser for the bowel. I think it helps scrape it clean and get rid of anything that may want to stay behind! Pun unintended! Lol! I did work hard at eliminating "gas" causing foods which mostly was yeast or baking powder food products. Yeast in  breads, BP/ baking soda in biscuits & cookies even. I did cut out a nice snack of hard raw veggies (carrots exc.) they are just brutal on my guts! I cook my veggies tender crisp but a fork, not  knife, must go thru them to identify the right tenderness or I pay later.  I have added soft raw foods to a salad, with raw veggies cut to eliminate...pun...large pieces of roughage. Ex...raw asparaugus or... cut in little wheels eliminating long strands of unbroken down fiber. I add Couscous made with a little more water to puff it up a tad more, then I rarely get a blockage from foods like Spaghetti that absorb too much water from the bowel. I also add lentils, nuts, some seeds, left over tuna, salmon or a cut meat to help get my iron.  If I did not require iron Infusions on a regular basis as badly as I do, I'd be vegan.  Also, as our good man  Eric suggested, put my "fork down" between bites to allow a good down to a powder chew! Honestly, this  takes commitment & time to eat! Challenge yourself if you have difficulty eating slower. I know  some people who chew there food 3 times then swallow,  thats just asking for trouble with a stoma & wonder why they have tummy aches till it's passed identifiably thru. If you can identify what you've eaten, besides color, chew  longer. Our Digesting fluids start in the salivating glands in our mouth.

Cooking...cooking foods correctly with a stoma is a way of life! I cook things like noodles a tad longer but never mushy or too soft...yuk! Even a minute makes a difference. Veggies to a fork tender not a knife. Yeast  Breads replaced with flat breads. They make a good enough thin pizza crust. Add roughage to your diet,  but go with a softer roughage such as lentils & beans. Please everyone DRINK your FLUIDS  before, during & after meals & snacks. This plays  a huge role in Digesting your Foods. Again...chew, chew chew! Train yourself! 😂😅🤣😂😅🤣😂🤣🤣! Sorry, couldn't resist! Lol! 

After surgery the high majority of us produce Scar Tissue. Its nasty and can strangle a bowel if you produce enough of it. This is what my section of gut before the bigger one is like because of scar tissue. Scar tissue has even attached bowel to bowel so when foods go thru it's a pain in the stoma! They have  been in my belly so often I suggested a zipper! Each visit inside means more scar tissue. To remove scare tissue to get somewhere inside is time consuming. They either have to cut thru  it or lazer cut thru it. Both ways  are risky as it can involve accidentally cutting thru something not intended to cut thru. Ex.... A blood vessel, or bowel or...we have a lot going on in our inside factory. Removing scar tissue means a build up of more scar tissue & often tough stuff! This is not what surgeons practice for. They like a nice clean cut, go in, take the bad stuff out, stich you closed and send you to recovery surgery. Fact...everyone produces scar tissue, its just a matter of how much and what it attaches to.

.Chris...I had to look up Introspective! Compliments of post concussion trauma!  I suppose it was a form of navel gazing! but I have excellent "flow" , and not in the stoma/gut way, thank you John68  for that Video in your forum on Positive Thoughts! Keeping busy, moving forward and doing our best is so important. I am almost 11 years with Rose, and  have had to figure everything out with little to no help. No stoma nurse.  Finding this sight even after 8 years was a God send! Thank  you Eric! It helped confirm I was doing things right! 

COMPLAINING.. Try and think of what we think of as whining  more as stating a fact.  I cannot Express strongly enough that it is  VITAL to tell the doctor EVERYTHING! Even if we think it is unimportant to why we are there, it may be the piece to the puzzle that actually fits. The best way to do a Doctor visit is make notes & take them with you!  Then make  notes about his answers whike your there before you forget. Belive me, they appreciate this more then you will know! If you don't want to take notes in front of them ask if you can record the answers. I did this over my camera on video, sound only. Nothing is worse then going  home with unanswered questions or  regrets of having to make another apt. to ask them.

Allow yourself TIME to figure things out what works for you. We are all different and it helps to keep a journal or a spread sheet of some kind. List what you have eaten, the effects of it, everything. Eliminate what you think causes an issue, add it again later to check,  it will help turn on that light bulb and brighten your future! 😁🤦‍♀️😷

Remember too... NO question is a dumb question. Here or in the doctors office. They can't help you if you don't supply the thread! Best to you all suffering they  these issues. Be kind, Be patient, Be calm. and FLOW!!! 😃🤣😅😂🤦‍♀️😷


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ChrisandBagpus
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May 31, 2020 7:34 am  

@jtvt

I have some knowledge of MRI scans. It depends on the zone of body and the number of slices that scan was composed of also it depends of the type of scan T1, T2 etc. thes different T numbers highlight or show the image of different structure based on water content, solid masses, gases etc. So the main point is how detailed the scan was read and what were they look for in the scan. An important point is the skill and experience of the doctor doing the report. The best way to describe the analysis is it all about pattern recognition and the time allowed. So without another scan they might be able to review (Second opinion) or not but worth an ask if the scan cover the area well enough. I have ask with my Dad's results second views that identified detail that was missed 1st time around

Hope it Helps

Chris


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ChrisandBagpus
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June 2, 2020 6:29 am  

Just an update

Had a reply from the stoma nurse. She look at two photos I sent of my stoma The consultant and her have both looked at the photos an think I have small loop in the bowel. I can't going for an appointment with the stoma nurse have to wait for now.

Jtvt

Could this be similar to your problems?


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