Advice on Stoma Needed Please

[Evamarie]

My husband had a clonostapy 2 weeks ago. He is a C5/6 Quadraplegic. After the surgury, it was discovered that his stoma opening was about 2 inches down a crevice next to his skin. At that time the surgeon said that he felt the stoma would be fine and would work but there was an option to have another surgury where he cut open his stomach and would move the intestines so that the stoma opening would be in the proper place. Being new to the world of stomas, we elected to trust the Surgeon that all would be fine and declined an additional surgury. After coming home and doing some research, I am now not sure that was the right decision.

* It is my understanding that the crevice between the stoma and the skin should be packed with algenate and be allowed to heal, but in his case it would heal over the opening of his stoma.

*Will he be at risk of continuous infections with waste running down the crevice onto his skin?

* Will it be more difficult to keep his skin around the stoma clean and his bag from leaking?

I am at a loss and totally overwhelmed to understand all the information I am reading and also having a very hard time finding any information regarding a stoma opening being placed like this. Any information or advice you might be able to share would be most helpful. He is still in hospital and the second surgury is still an option.

Help please
:sign0085:

 

[fuzzy butterfly]

Hi just read your post, I know this is a month or so since your post. But having had an ileostomy I would say that having a stoma in the right place would be best as it can be tricky enough there.having a convex stoma is even harder. So from what I know and have read I'd go for it to be re placed,I think it would make life a lot easier for you both,a re position could be done at any time. Just go through all the options with your surgeon first and if possible a stoma nurse..good luck and best wishes to you both

 

[fuzzy butterfly]

PS I would think he would have a lot of problems with his skin and with the pouch staying stuck if it was to stay convexed!!

 

[Evamarie]

Just wanted to thank those of you that have posted in reply to my post and update you on my husbands status. What a nightmare we have had and are still currently having. After being in hospital for 2 months (for what was suppose to be a 10 day stay at max) he is finally home but far from okay. While he was in hospital...we finally discovered that his intestines were kinked and were blocking the stool from outputting. This would start him having extreme blood pressure spikes (as high as 240/180) and lows (to the point of passing out and flat lining). It was horrifying! I noticed one day that he kept pushing on his side right down below the stoma..and asked him why he was doing it, He replied that somehow it was giving him some relief (odd since he is paraylzed). Well that started the two of us thinking it must be blocked because on occasion he would pass stool but usually right after being moved or turned or having me massage that area on his stomach. So they overloaded him on laxatives...which did seem to help after some time and also did seem to unkink the intestine...but did not move the opening of the stoma at all. It is still an index finger depth down along side the seperation....meaning his stool is emptying there and having to push its way up that distance to reach the bag. We begged, argued and pleaded with anyone that would listen but everyone seemed to think it would be fine..including the surgeon that did that surgury. We have been home now a month and a half or so and its a nightmare. Not only is his skin a mess...but the stoma is being strangled where the seperation is healing. We have tried powders, pastes, seals...the list goes on and on but anything that blocks that crevice opening ... dissallows the stool to get out..meaning it is always sitting right on his skin. I am very concerned about how tight it is now where the seperation is and really do not want him to become blocked when it chokes the intestine meaning an emergency surgury. We have finally convinced the surgeon to do an exploratory surgury to see whats going on and try to repair the stoma so it is at least opening where it is supposed to. She will do an illeonostopy if she is not able too, but ... she says it will be 2 to 3 months out. This just seems totally not right to me and it seems like it would be sooner as everyday the stoma is getting tighter and tighter...barely allowing any stool out at all. I have searced the internet for this kind of issue on stomas and am having absulutely no luck finding anything...If anyone has a stoma like this...any thoughts or advice you could give would be most helpful. Thanks again for the replys

 

[fuzzy butterfly]

Aw Evamarie my heart goes out to you both, what an absolute nightmare as you said. I cannot believe they are messing you around like this, its a crime!!!. I'm so sorry I can't help with more suggestions, but keep pleading with docs as this sound unbearable!. I know this isn't much help as such, but I will be here to listen and give you support and what ever advice I can. Can I ask what county you are in, so I can see if I can find anything out about it for you. Best wishes ..

 

[Evamarie]

Thanks for the kind thoughts and support mandyk. We have started him back on the laxatives (a huge amount) to loosen the stools again against the Doctors advice ... but the output is not not getting out anymore and this is the only way we could think of to fix it. We will be seeing his Spinal Injury Consultant on Monday and are hoping that he will take a look at it and say "OMG" or "WTF"..haha somthing to that effect anyway and book him into the spinal unit to help us get this fixed (fingers crossed). If not then we will just have to keep him as liquid as possible until the surgeon gets him in because I just dont know where else to turn for help with this. The stoma nurse has also called the Surgeons office because she is getting pretty concerned about how tight it is getting now. We are in the UK and I have to say...I am not really impressed with the NHS system at all (Im from the US but my hubby is British) Everything seems to move very very very slowly and it always seems like everyone is pointing you to someone else rather then just digging in and fixing the medical issue. I have found that if I lay him on his back in bed and leave the stoma open (praying there is no output) for an hour a day in the morning and at night...that his skin is starting to clear up some. The hard part is he cant feel it so cant tell me how badly it is hurting him...which is probally also a blessing for him right now. I really do appreciate your support and desire to help if you are able. If I could just find any information on the internet about this kind of complication ... it would be so helpful but I can not seem to locate any. Thanks again mandyk!

 

[fuzzy butterfly]

Hi Evamarie, I'm glad your husband has finally got home but sorry to hear the problems are no better. The Nhs can be a funny creature at times, somethings get dealt with quickly some take ages. It seems so unfair when people are suffering and can't get help quickly. If you have no luck with your spinal surgeon on Monday, ask where their PAls office is located and go and speak to them regarding your concerns . They should look in to it for you, also try threatening them with an official complaint, see if that gets them moving quicker. Google PALs and check out what it can do. Keep being pushy and don't let them fob you off!!.
When I got my ileostomy 18 mths ago it was basically because I had severe pain for over 12mths as meds were not working.I had lost so much weight and could barely even drink water. So I packed a suitcase, took myself to my local hospital and said,I have Crohn's and can't stand the Pain any more blah blah!! I'm not leaving this hospital until something is done as im ready to slit my throat (slight exaggeration) though not much!!.low and behold I'd had my OP, a week later without leaving the hospital well except to Change to
one suited to doing the OP..
Try and check out PALs before Monday and arm yourself with some info, if need be write it down or email the page to your phone our download it, so you can refer to it if need be.wishing you both the very best of luck for Monday. Please let me know how you get on, here's hoping you get a result and things move forwards.
AS I said I'm here for you, even if it's just for a talk, moan, vent off stream or to give whatever advice I can!! Very best wishes and fingers crossed x

 

[fuzzy butterfly]

Hi Evamarie, how did your appointment go ?, hope it went well and that something is going to be done to help your husband.best wishes, Mandy x