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what to take for pain with stoma stent /drainage tube- Rosemary

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Posted 12/7/2012 3:15 AM (GMT 0)
So today i called the resident to see how much pain the stent/drainage tube is supposed to cause. It is basically spreading scar tissue apart at my abdominal wall level to let out liquid poo which i need it to do. But it really hurts in and of itself.

I have extra strength acetaminophen caplets that dissolve in warm water. 500 mg each. I would need two every 6 hours like in the hospital. Question is would they be sure to dissolve in me? They are not enteric coated nor are they time released.

I just took the equivalent of two of these only in the childrens liquid formulation. 160 mg per teaspoon ful. Had to take 6. Yuck!

Hoping for some pain relief so i can sleep but not want to get sick. Not want to take a chance the caplets won't dissolve and get stuck in my stoma drain tube.

I have a nurse/social worker coming in the a.m. That i am hiring at $95 per hour to help me with the bag change around the drain tube. She is a great lady and am glad i found her she runs ano agency. BUT shouldn'tt the hospital be doing some paincontrol and additional help with changing appliances around the stoma tube. Last tuesday when the stoma nurse did help me learn the procedure with the tube the tube fell out and i had to quickly stuff it back in me. Since then it has caused me pain but i soooo need it as otherwise i have a closed stoma. I asked the resident if i had put it back in wrong and she said no. Well it did noit hurt for 2 days after the resident put it in sunday. Then after i had to reinsert it it does hurt. She said i can just expect some discomfort that i just need to deal with. So maybe it is just that it has now been in for 5 days.

I am latex sensitive. I hope it itls not made of latex. Likely is.

Also will stenting scar tissue open make it stay open? Or will the scar tissue just close right back up when they take the tube out the 19th? That is why the doc did not want to see me til then. I will definitely get some extra tubes and threads to hold them in with to take with me. Plus i have to find out how they place them.

The resident was talking about me going home after the 19th. Nobody at home town is going to deal with a closed stoma. It needs relocation to ither side and i do not know if i can undergo another surgery with the way i form adhesions without ano adhesion expert who makes stomas and relocates them and uses sprayshield adhesion barrier like they use in europe and australia and other places.

The people i am dealing with don't get why i am so worried. I do. Closed poop hole just barely stented open and only able to pass liquids. But i am lucky they put in the drain tube. If not for ano assertive ER doc i would have ruptured on sunday. He had that surgical resident down there really fast!

Even if i find the best doc in the world and wait the 6 month wait time that i only now am finding out about, with my adhesion forming issue I do not see how this is going to work. I think the end is near for me all over scar tissue. And to think all this unneeded as never had the sigmoidocele but current issue is the stoma.

Lucky and sarah how are you doing? At least mine is stwented open and i can drink. Guess i should be grateful? Hope that tylenol kids liquid kicks in. And i can get some relief. Rosemary
Posted 12/7/2012 11:57 AM (GMT 0)
Hi rosemary
I hope you were able to get some relief with the Tylenol it makes thing so much harder when you are tired and not much sleep

I'm ok sort of had lot of pain and gas as usual along with vomiting and very watery output lost another 3 kilo but hoping its just fluid loss as I'm starting to get worried about my weight down to 39 kg don't know how I'm suppose to gain any with a bung stoma ?
Back in to hospital on Monday hopefully only a day infusion for magnesium an salt getting really boring all this stoma crap or should I say lack of it .
Don't know if I like the way it has to be fixed even though it's still a few months before the surgeon will touch me, gives me the shivers thinking about surgery now
All the best rosemary thinking of you lucky
Posted 12/7/2012 12:20 PM (GMT 0)
Lucky so they are minitoring yiur blood levels? Mine are not being monitired. I have to get them going on that. I have to take a lot to sleep due to the pain. Are you a scar tissue former too? Rosemary
Posted 12/7/2012 7:29 PM (GMT 0)
Yes I have a blood test twice a week to monitor my levels since I had the colectomy I'm unable to store magnesium and I guess my salt and potassium are low because of watery output but I have a excellent old physician taking care of it he's very good can't beat experience. .

Yep I have a disease that causes hard skin and scar tissue it affects me in many ways have a badly scarred esophagus and lot oF digestive problems so having a blocked stoma is not helping much , I think you should probably be having. Blood work rosemary as you are not able to eat much either and watery output. Adds up to dehydration do you have any symptoms ?
Lucky
Posted 12/7/2012 7:41 PM (GMT 0)
I had asked about a month ago for nutrition counsel adn bllod work. But now that my hired social worker kicked the butt of the hospital social worker, monday i should be getting a call from nutrition dept. If not i need to call scheduling. Surgeon finally approved for nutrition and counseling support. I bet they do not like to as it means surgery went awry OH WELL!
Posted 12/7/2012 8:45 PM (GMT 0)
I'm doing fine compared to you guys! so sorry to hear the ongoing saga for both of you. Rosemary I agree you should be having regular bloods.. and Lucky.. wow 39kg is super light. You poor thing. What disease do you have that causes hard skin and scar tissue? that sounds awful.

Rosemary are you in less pain with the tube?? I'm really glad you've hired this social worker.. you need the support. And glad to hear you're getting counselling and nutrition advice. Good for you.

I saw my surgeon today, he doesn't think stoma hasn't stenosed (or at least he can get his finger in), but thinks there could be adhesions behind it. Either way.. no way he's doing any surgery for 3-6 months. So got to sit it out. He wants to do some contrast xrays (via the stoma) and an ultrasound, but like you guys even if he finds anything we have to wait.

It's not an emergency situation.. I can exist on soups, crackers, and small amounts of soft foods. It's not as bad as it was just before I had surgery.. so I know I can sit it out. I also have that awful clear water output (like urine) at times and he was very concerned about that.. says it's the sign of partial blockage, likely caused by adhesions behind the stoma.

So there we are. Much the same boat, but obviously not anywhere near as bad as you two. I can manage it.. although I can't see myself eating Christmas dinner any time soon. Parsnip soup for me I should think.

Praying that there's a solution for you both somewhere down the line. This is no way to live.
Posted 12/7/2012 9:37 PM (GMT 0)
I agree this is no way i can live!

Sarah, what he will do is a retrograde gastrografin enema xray. That will show if there are kinks or narrowings in the bowel behind the stoma. If there are then those are adhesions that are wrapped around the bowel partially obstructing it. Mine di dnot show that in mid oct so i was determines that issue was with the stoma itself.

With yours you may just need laproscopic lysis of adhesions. As you are from england where Sprayshield adhesion barrier is marketed do ask for it. It can be sprayed in if they do this lapro. Rosemary
Posted 12/7/2012 9:45 PM (GMT 0)
I have to have the tube in as my intestines were going to rupture without it as in severe pain from backed up gas and stool (tho liquid) so with the tube what i have is like a muscluar pain where the tube goes in behind the stoma but it is muscle pain rather than gut about to rupture pain so is much more tolerable.

Last night and today i tried the adult tylenol extra strength pills and they do dissolvae so i am putting myself on 1000 mg every 6 or 7 hours just like i was on in the hospital and i feel so much better.
Posted 12/7/2012 9:48 PM (GMT 0)
Rosemary, since the tylenol is working please take this opportunity to relax.
Posted 12/7/2012 10:47 PM (GMT 0)
You would not believe this both my nurse socail worker and i had this appliance on wrong over the drain tube. The anchor threads are around the base of the tube then you exert a bit of tension out to each side with one end of the thread on the left and one on the right. BUT first you have already but on the eakin and the wafer (hen you trap each thread just under the bag ring. I had the threads under the wwafer! It still anchored but would have made ano emergecy with the tube a lot harder to get to. This way i would just be able to click off the bAg and adjust the tension on the threads that anchor the tube. RJ
Posted 12/8/2012 3:04 AM (GMT 0)
Sarah, sounds like we are in the same boat boTh us waiting another 3-4 months for more surgery almost comical isn't it if we weren't suffering so much , do you have a lot of gas and pain as well ?
I haven't bothered taking any pain killers the pain comes so sporadic and very strong then eases so there isn't any point really
Sounds like your surgeon is in the same mind as mine leave well enough alone for time being, did he mention reconnecting you again ? Was wondering if maybe moving the stoma from the right to the left side would get rid of the adhesion problem must remember to ask surgeon when I see him on the 4th January my gastro did mention this to the surgeon who did colectomy then repair but he flat out refused said my stoma was fine huh !
Lucky
Posted 12/8/2012 3:08 AM (GMT 0)
Rosemary agree with Sarah seeing dietician is good not that I have put on weight but they do advise on fattening stuff to eat and hopefully they will do blood work next week , I have never been so thin and I hate the look of my hanging skin looks old old old :(
Glad you finally have the drain tube set. Properly boy what a mix up ! Would you consider having the stoma put to the other side have any of the surgeons mentioned it to you ? I'm going to ask mine if this would make a difference
Lucky
Posted 12/8/2012 3:59 AM (GMT 0)
Sure i would have my stoma moved if it would wor. I think there is so much scarring on my right it is hopeless. I have so many adhesions in my whoke gut i am terrified of starting with small bowel obstructions again like i had from the unneeded sigmoid resection that i didn't know was unneeded back in 2006 that luckily the 2007 ileo doc was able to lyse. Sure hope i don't start with that again.

Do you lucky and sarah think we are going to all make it? I have to live on total clears even milky stuff gunks on me behind the drain tube. Jeeze. Rosemary
Posted 12/8/2012 1:31 PM (GMT 0)
Even with my disease and the surgery complications I do believe their will be a solution for us rosemary I'm not planning on checking out yet ! This is just another problem that will have. An answer for us .
Try and focus on gettinge through till the 19 th December and see what your surgeon comes up with she will have to do something if the stenosis isn't any better rosemary just try be patient a little longer and drink as much protein drinks as you can to try an keep your energy and fluids up .
Lucky
Posted 12/8/2012 4:32 PM (GMT 0)
I think they are just Going to dump me even if th stoma still does noit work and leave me to die. I have to follow up on other places i have sent records. All say do nothing for 6 months. I am getting weak and can tell i am starting to slip away. Herd to get iout of bed in the a.m. Just want out of all of this as i don't think anyone will have the answer. One friend even said this was all my fault for having so many sugeries. Well had i known a hysterectomy would lead to all this i would not have had it. Jeeze!
Posted 12/8/2012 5:07 PM (GMT 0)
Rosemary if it's that bad you should be on TPN.

I don't doubt (and neither does my surgeon) that things can improve for me and I'm sure they can for you both too.

I think it's important to focus on the 'now'.. not waste energy worrying about the future or wishing I could change the past. I know it's hard, but you must stay strong Rosemary. There may not be a magic solution to all of this, but I dont' doubt that things will improve for you.
Posted 12/8/2012 7:05 PM (GMT 0)
I. asked about seeing clinical nutritionist about a month ago. No action. Then hired my oiutside social worker to kick butt of inside soc worker ho said i should here from nutrition team monday. I had taoled to the inhouse social worker prior myself. I had the social worker call on my behalf to see if the doctor was goin gto be at my dec 19 appt and not skip it like the 27th.

I am going to ask what the plan is. I called Mayo, MN and their team said they would have me on TPN for a year then redo the thing. At leats that IS a plan. I would assume they would have thebe in tho so gases could come out of me. Or due to all my scar tissue if i sply have no chance of any stoma working. Who knows. I need to know wjat their plan is. The resident was talking about sending me home the 19th. There is nobody at home that would assume care even if it was stenting the stoma open and TPN. Seems like they cannot just leave me with a nonworking stoma and no nutrition. Rosemary

Post Edited (esoR) : 12/8/2012 12:12:11 PM (GMT-7)

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