So sorry Liz,
I know how horrible post op complications are when you thought that you would be 'normal' by now...give it time, my only advice (I know that it is lame!) but you just function as best as possible and pray that it is the right solution...hang in there, I am cheering for you.
Sharon

Dear Liz11,

I don't know what a EUA is but am guessing it's an operation or procedure. I can imagine the drain. I've wondered how they could sew me up if I have to go to a permanent ileo.

I don't see how you can do anything with it in that position. I hope it becomes easier to deal with and you don't need it for all of the 6 months.

Dang, Liz - so sorry to hear about your complications and drain. I am not familiar with these drains - how big are they, how do you sit, etc.?? Here's hoping it won't be there for 6 months...

tough.. an EUA is exam under anesthesia, basically a short surgery. I think I've had four of those already this year. In addition to the 6hour jpouch excision surgery.

NancyAnn that is exactly my question.. how the heck do I function with this tube sticking out my arse. Its called a mushroom catheter. Right now I am sitting sideways on one cheek which still hurts a lot. It feels a lot bigger than it probably is. Haven't had the guts to look at it yet, but it is a very hard tube and definitely sticking out about 1-2inches.

Has anyone ever had this? I need some advice. It will be in at least six months, maybe a year. With multiple more EUAs in between. Seems the outer area keeps healing closed before the inner area and the drain is needed to keep things open and draining so the inside heals. Its already been 6 months since the jpouch removal surgery and no end in sight.

Does anyone know anything about this stuff?

So sorry you are going through this! Although I never had a mushroom catheter, I had to have an "anal drain" inserted temporarily after my colectomy because I was leaking so much stuff from there area (can't even describe what it was... it was a brown, watery mucousy discharge and I was getting cup fulls at a time). The tube was like a long, oversized JP drain. This was inserted a few days after my surgery, with no anesthesia. Thankfully I only had the tube in the hospital, but it was difficult to just sit with it let alone walk around. I needed it for a week. However, luckily my tube was flexible so I could move it around to keep it out of the way as best of possible, and I improvised by using surgical tape to attach it to the side of my hip and outer thigh so it wouldn't stick out straight behind me. That allowed me to walk and sit a little more comfortably, and it didn't look so obvious to others.

Could you perhaps ask for something more flexible? Is that a possibility?

I had a drain for 3 weeks after my proctocolectomy. Pretty sure it was just a JP drain. I functioned fine and didn't really notice it was there. I slept on my back, walked the halls, sat on couches to watch TV in the guest entertainment room. The bladder catheter was the thing I could not tolerate and the stomach drain (BCIR doesn't use the dreaded NG tube). I did not have a wound left open though. Why did they do it that way I have to ask? My butt was sewn up. Only way I could describe it was like a draw string bag was sticking out of me. Now I just have a puffy area there.

It sucks to have tubes but I think you will be ok and it has to get better. Or so we say!

Liz, would a doughnut cushion help? I used one right after my seton placement and it made things a bit more comfortable...

ok this mushroom catheter is completely different than the drain they put in your butt after a colectomy. Way different. The post colectomy drain was really no big deal.
The drain I have now is because there is a huge and chronic sinus tract which is unhealing properly and I think the tube goes way way up inside.
Yes its about 3 inches of HARD plastic stuck out the arse. I think its the torturous form of a seton drain. Maybe I will try the donut cushion. That didn't work at all after the original jpouch excision surgery cause it split the butt cheeks apart too much, but now it might give a place for this stupid tube to go so I can sit. Out of all of the double digit surgeries I have had, all the complications, this is absolutely the worse thing I have ever dealt with. And do you think I could get a nurse to call me and explain what the heck to do with this and give me more details about it... heck no. All I got is a hand drawn sketch that the surgeon gave my husband after my surgery.

And nancy ann or anyone.. where do you get the donut cushion things? can you get them on insurance. We are so out of money. I haven't worked since march.

Liz,

I am so very sorry to hear you are facing this new challenge. You have been through heck already & have still always managed to be a generous, resourceful contributor and an inspiration to us.

It's just not right that you going through this.

The tube you have is nothing I have experienced, but many of us do have experience dealing with the medical system. It's so hard when you feel weak and depleted (physically, emotionally, financially, spiritually, etc.) and the last thing you feel like doing is fighting to get the service you need and deserve.

It sounds like you have a very supportive husband. Maybe he or another trusted person in your life can become your primary advocate and start calling the doctor's office at least once a day until you get help. You need to be seen and to get more information immediately. This situation is not acceptable when you have no information about how to live life with the tube.

We are thinking about you and sending our best wishes for comfort ASAP.

Liz, I don't know where it was purchased but I paid sales tax and all $30 for one of those pillows for my dad. You might need 2, if they are all like his, because your horrible tube is sticking out so far. I'll ask where he bought it.

It concerns me too that no one through your surgeon's office has responded to you. How would they do their jobs if they had a 3" tube hanging out of their a-hole?

I don't know your work situation but am assuming they have no short-term disability insurance or long-term disability insurance. If they have LT disability you might be eligible for it now.

I don't think there is any way you can work as long as that drain is in there.

Liz, I got my doughnut pilllow off amazon.com: http://www.amazon.com/s/ref=nb...doughnut%2Caps%2C163. I bought the 18" rose doughnut cushion. I also bought a smaller one, but IMO, the larger is more comfortable, even if you're a small person. I agree w/tough: if you can swing it, having 2 is nice (one for the car, one for the house).

lizz, did you have this done at CC ? who were your docs?

yep, done at CC. Remzi is my surgeon for the last several years and I would never let anyone else operate on me. I have total trust that he will eventually be able to fix me.

Tough.. I am (or should I say was) self employed. Ran a pretty good business for 10 years, but it has fallen to the wayside since March. Never could get disability insurance with a pre-existing of UC. Welcome to america. My poor husband has taken so much time off work this year with all of my surgeries and month long hospital stay that I'm suprised he hasn't been fired yet. Then we'd really be toast with no insurance at all. I have to start the SS disability process, but I'm so overwhelmed I don't even know where or how to begin that.

Nancy.. I'm ordering donuts right now. thanks so much for the link.
finally got ahold of a nurse, expecting a call back from her soon to explain more of what is going on and hopefully she will have some ideas on how to manage this stupid thing.

ok and you know how they say not to make big decisions after anesthesia. I think there is good reason for that. As yesterday I signed up to foster a big lab dog who was having a tough time in the shelter. I thought - why not, since I can't really do much with a tube out the arse! So now I have four dogs at home. We have three of our own already. Anyone interested in adopting a loving, loyal six year old overweight black sweet lab???
thanks so much everyone.

Liz, so sorry for your suffering. You have been so supportive of me, and everyone on here. I don't really have any advice. I know there is nothing I can say to make it any better, but wanted you to know I am thinking and praying for you!

I too took on a 4th dog after my pouch removal. He has given me much joy. Everyone else thinks I am crazy!

Good luck to you!

so sorry to hear about what you are going through. i am not worried if i have to get an ostomy again....it's the butt wound that scares me. are there any highly nutritious drinks you can take that aid in wound healing, or a type of wound vac? something to speed up the healing? that way at least you can reduce the amount of time you have the tube in? are you on antibiotics?

Liz,

I just went through the grueling SSDI process this year. I was approved the first time I filed. They paid me back benefits to a year before I filed.

If you have any questions about the filing process please ask. I am in a Face Book group that is about filing for SSD. I received help from several members of that group.

fq.. the wound is now classified as "chronic" as it has been unhealed for over 6months. I had absecesses and was even sent home on iv antibiotics with a picc line after my initial month long hospital stay. Continued antibiotics do nothing if the wound is not infectious- other than ruin my appetite and make me throw up! Thanks to a great functioning permanant ileostomy My nutrition has been fabulous the past few months, but that hasn't done squat to help the wound. I am actually wondering if there are more powerful drugs like remicade that can help with any of this. Does anyone know? Seems I'm in the very small percentage of people with this level of problems. I always feel so privileged to land in that category.

tough.. I will take you up on your offer for sure. I could use some handholding and support to get started especially since my mind is in such a bad place right now. Can you please pm me with more info. thx. I so appreciate it.

Hi Lizz

I can relate totally with what you are going through, I have had multiple procedures & tests since having my j pouch excised in March 2011, I also have a chronic sinus tract in the perianal wound, I also have a fistula in my perinium that has refused to heal, I have had multiple drains, wound packing amd even a wound vac drain in the perianal area , but nothing has worked, my surgeon has now referred me to a plastic surgeon who has informed me that he and another colo rectal surgeon will work together during the next operation I need and that one will as he said basically take me to bits and the other one will put me back together. He said it will be a difficult surgery and as I have always had healing issues will be a tough recovery also. I have also had tests for crohns, I had an ileoscopy not too long ago, there was some inflammation inside my ileo but biopsies showed no crohns, I also had an mri scan done of my small bowel around the same time, which said that there was evidence that just inside my stoma there could be a patch of crohns, but my surgeon as the biopsies proved negative for crohns says not crohns, although my gp I think has her doubts. I so hope they are able to heal this for you with the drains, my drains were never left in as long as that, and even the wound vac was supposed to be for 10 weeks and only ended up been for 5 weeks , I had to have weekly changes under anaesthetic, at first twice weekly, I feel my surgeon did not persevere with my treatment as the last time he performed the procedure and decided against continuing he said " you must be sick of it, cos I know I am" ! I had a presacral collection post op also but at the last scan, that was no longer there.
There is a question, I would like to put out there, I have recently been diagnosed with scoliosis and also screlosis of my sacroilliac joint, the screlosis they have said could be linked to ibd, my question, anybody have the screlosis that they have said could be linked to ibd ?
Sorry to hi jack your posy Lizz, I hope the drain works, I think my fistula was complicating my sinus and everytime they closed the fistula it just re opened. My last report stated it was a wide necked fistula whatever that means! Are you on any antibiotics, I spent alot of the on anti biotics while I was having all the procedures. Currently on them again although I think my body is now immune to them as they don't seem to make much difference to the pain, discomfort and discharge! I see the colo rectal surgeon this coming friday who would be carrying out my next op with the plastic surgeon, so hoping for something to give me a boost.
Please let me know how things go, also if you have any questions or require any information, let me know.
Best of luck
Shelly x

shelly-
I am so sorry to hear what you are going through. I too seem to keep having tests for crohns. Fortunately they keep coming back negative, but obviously its on the docs minds. I am lucky to have an excellent surgeon on my case and I know he won't give up on me.
question for you.. did you find the drain tremendouly painful. I am back at the pain level that I was day 3 after jpouch excision surgery. (I don't have any recall of the first two days after jpouch excision surgery.) I am feeling desperate as this pain level is tremendous and knowing that this drain will be in for six months....

liz77,

Please get through to your doctors regarding your pain. There is no reason you should not suffer needlessly. If your surgeon will not prescribe pain medication go to your GP. My Internist prescribes my pain medication as all my surgeon prescribes is 20-30 pills at a time. Mine thought I could just take Ibruprofen and we are not supposed to take NSAIDs! I tried it and it is better than nothing but not enough. The prescription strength of ibruprofen is 600-800mgs. If you take it make sure it's not on an empty stomach. I take Norco which is hydrocodone and tylenol. Plain tylenol does nothing for me plus you have to watch how many mgs you take a day. It can be bad for your liver.

I hate to see anyone in all of this pain as I've been there and I still have very bad pain days and weeks.

Hi Liz
Yes the drains I had were incredibly uncomfortable, I was given something by my stoma care nurse called a valley cushion, which I have to say does help.but due to the pain I was getting due to the fistula and the collection, I was already on pretty strong pain meds and unfortunately still am! Which isnt good but even then some days they just don't help with the pain. Definately see if you can get some stronger pain meds, these medics are ok but they are not the ones suffering the pain and discomfort 24/7. I take pain relief four times daily, morning I take 5-6 pain then thoughout the day another 4 and nightime another 5-7 painkillers , also throughout the day if needed I also take oral morphine.
Have they said they will change your drain regularly , when I had mine they changed it at first probably every week, but then they had to place a larger one in, and left that in longer and by the time I saw my surgeon in the clinic it was practically hanging out so he removed it.

I seem to have no problem getting any pain meds I want from any of my doctors. The problem is.. I don't like taking them. They make me loopy so much so that I can't really function at all and they ruin my sleep. I refuse to take NSAIDs because both of my GI docs all say stay clear away from them. Tylenols are useless. Tramadol doesn't touch this new drain pain. So I'm left with vicodins and percocet. I had been off all the narcotics for the last several months after being on them for quite a while after the jpouch excision surgery and associated complications. Having to use them again is very disheartening for me.

The drain is in there for 6months supposedly. Next EUA is in 2 months where I think they try to pull the drain down further, hoping it has healed up high a bit.

I can't stand percocet - make me out of it. I've been taking Norco, like vicodin with less tylenol, long term. I was worried about it and talked to my friend and former doctor, she retired. She said it was ok for long term as long as I didn't start taking more and more or as some do to get high. She also said I was on a low dose.) Some days I need more than others and wait for pain starts before taking it.

As I understand it you don't become dependent on it, addicted, as long as you take it responsibly.

You are right tramadal does nothing as well as just tylenol. I don't take NSAIDs either.

I wish there were a magic pill or whatever to combat our pain. I take pain medication for my abdomen but it does nothing for my fibromyalgia.

Oh boy, Liz and toughenough you both have been through so much. I thought I was the only one. There is no easy way or answers for us! You just hope that tomorrow is going to be a better day.

Wishing for good health for all of us!

Roberta

I have filed for LTD and was approved right away just still waiting for the amount and first check, now. My employer had LTD insurance for their employees. Thank GOD for that! Talk about major life changes for all of us...!

Roberta

Liz, I hope this turns around for you soon.

I had a question for you and anyone else who might want to respond. I currently have a disconnected J pouch and an end ileo which I am happy with. I intend within the next months to have the J pouch removed. My question revolves around the removal of the anus and sewing up the rear as part of this surgery. It seems that a main issue with this surgery is the healing of this wound. Did you consider leaving the anus? I am probably going to leave it, but I wanted to know what the possible down sides are. From what I have read the surery you had can be a difficult wound to heal, is that what is going on with you or is something else "a foot". My surgeon has only said that leaving the anus will require a periodic "look see", as I have had rectal cancer. I want to avoid the long recovery period and don't really want Barbie /Ken butt , want to minimize the removal of my body parts but I also want this to be my last surgery. Any advice or thoughts would be appreciated.

chiro. yes that the complications I am having are related to the bottom wound healing. My surgeon is top dog of colorectal surgery at Cleveland Clinic and the only jpouch removal surgery he presented me included the full gutting of the backside. I completely trust his knowledge and experience. I had UC. You may want to ask around and get other opinions, maybe its different for rectal cancer, I don't know. I would be concerned that if you weren't fully gutted you would still have some kind of problems and would need to deal with it later..even with another surgery. Also my surgeon left things open to heal, that's his standard way of doing things. I have read others have stitches. I might ask around about that to.. pros/cons.

Liz,
Can I ask you why you got rid of the j pouch? Also, how long did you have it? I am sure I missed other posts but just tuning in and wondering why.
I have had mine since 4/30 and really am not right. Going through more testing to see what is going on. Was on a picc line for nutrition for several months, now on steroidal suppositories because anus is in UC flare, in a few weeks another barium enema test.

Roberta

Roberta have you tried Canasa suppositories? They are expensive but worked much better on my cuffitis (UC flare) than the Anucort suppositories. I finally have my cuffitis under control and the difference is like night and day.

I had to use them for a long time and still use them several times a week.

quote:

I would be concerned that if you weren't fully gutted you would still have some kind of problems and would need to deal with it later..even with another surgery.

This is my concern also. There doesn't seem to be too much on line about the pro/con. Most people arent given a choice their surgeon just does one or the other. It does seem the majority of people have everything removed but there is a fair sized minority that leave the anus intact. I have an appointment in early Oct with my surgeon and will discuss it further. My biggest concern with the "gutting" is a long healing period and potential complications like you are dealing with. Secondarily it just seems odd to be sewn up back there, of course it is odd to poop into a bag on my side too and I have adjusted to that quite easily. In earlier discussions my surgeon he said this can be a difficult wound to heal, this makes sense just from a movement perspective.

toughenough -
Earlier (a few months ago) my surgeon had prescribed the canasa (still have them) because he said I had a fissure. When I went to my GI she prescribed the steroidal suppositories and saw my anus was ulcerated. No wonder I was in such pain/contractions down there. Hoping that these will work.

Roberta

Did anyone do a flex scope and biopsies to see what is wrong? I started out on the steroidal ones, then went to canasa, then back to steroial ones as my GI got me an appointment at the Mayo Clinic with the specialist I saw there in 1998 for my UC. I had been on one or the other medication since mid January and went to Mayo the middle of May. They repeated the tests and compared them to the local ones and pathology reports. He prescribed me the Canasa and told me to take it until I thought it was better and to then do every other night and when that was working to use it several times a week. I have just been able to use every other night about 2 weeks ago. So I've been treating it 8 months and the diagnosis is "chronic cuffitis" UC. I was afraid I was going to loose my pouch but am better, thank God.

I also had a C-Diff infection at the same time for a few months as well and it took 3 rounds of flagyl to get rid of that. Maybe they should test your stool to make sure you don't have anything like that either.

For a while there I used both kinds, one in morning and a different one at night.

I hope you are feeling better soon. Please ask them to do biopsies.

Roberta,

Did you file for social security disability benefits yet? If your insurance company gets to decrease the amount they pay you based on what you get from social security disability they usually help you apply for it.

I had a policy I took out 25 years ago through a professional organization. I paid for it myself, it wasn't an employer plan so I filed for it first. My money from them stays the same if I have social security or not so they didn't make me file. I got approved the first social security disability filing too, as I have other health problems, including fibromyalgia. What a relief as we have a large co-pay and some things like chiropractic care are not covered.

toughenough - My GI did an extensive blood draw (4 big viles) and sent it off to California to see if it is Crohn's or UC. I believe it is some type of genetic testing. I go for a barium enema in Oct. so that she can look at the entire GI system. So far, my pouch has been fine. It is the anus which was left behind.

In Rhode Island where I use to work we have TDI benefits (temporary disability insurance). I am able to collect from that a few more weeks. Although, it will effect my disability benefits of the private ins. company (waiting to hear the amount collecting). I have not thought about SSI yet. I did not think I could apply because I am collecting from another ins. company. This is all new to me and still not sure how it is all going to work out.

Hoping for the best!

Roberta

There is a 6 month waiting period before you can draw social security plus you have to have worked so many quarters in the last 10 years or so. After on it for 24 months you can get medicare. You can collect it along with other insurance benefits. Sometimes it's the other insurance companies benefits that get decreased if you qualify for social security but they still have to pay you the difference so you will receive the insurance companies awarded amt.

After you get your LTD from the insurance company you will know more about filing for SSDI. I waited so long to file I lost out on 6 months of benefits I could have received.

Hopefully you are going to get better and will be back at work - that's the best case!

Let me know if you have any questions after you know more from your insurance company.

Good luck on your barium enema test. It sounds better than drinking the barium for a small bowel study - yuck!

Thank you so much for the information! Hopefully, we are all moving in the right direction!

Roberta

Has anyone heard from Liz lately? I've been thinking about her and wondering how she is doing. She's been a real leader and source of inspiration on this site and I don't like the thought that she might be suffering and we don't know it.

Lynn,


No I have not heard anything from her.

You are so right about Liz. She is gong through SO much but still tries to help others. She has been wonnderful to me answerig my PM's and giving me hope.

lynne and gmarie.
I'm still around. Thanks for such kind words. You guys put a smile on my face. And you don't know how much I needed that!

Things are extremely difficult right now. But as always, I'm sure I'll figure out some way to get through it. gmarie.. how are you doing?