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10 replies

J-pouch problems/Mesh/Hernias

Jamie_M_WJamie_M_WMember
Hi,

I need some advice. I have had my j-pouch now since 1998. And have been having alot of problems. I had to have a complete hysterectamy 3 years ago also due to a ton of scarring from my previous surgeries/ 3 step-total colectamy. I had severe ulcerative colitis at the age of 12. Well, Since my hysterectamy I have had problems with my j-pouch prolapsing. I had it tacked back up in 2010. And 9 months later it was prolapsing again. I literally could not go to the bathroom what so ever again. All I could feel was tissue hanging out. Well, Oct 2011 she went back in there and tacked my pouch up with some mesh and made like a sling which she attached to my pelvic bone. It has stayed up which is wonderful but I been in severe pain since then. I am constantly feeling a rubbing sensation when walking and just generally moving. Its a very sharp constant pain. I am to the point of loosing my mind it hurts so bad. Also my bladder has been leaking and I been getting bladder infections so bad I was peeing blood and clots. I went back to my surgeon and she said I have had alot of trauma in there. Ok I know that. also my pelvic floor is not functioning what so ever its very weak some of my tests have showed. So last week she ordered a ct scan to make sure the mesh wasnt twisted. Well, I just got a call from her telling me my pouch is still in place it's not prolapsing. Well, I know that I would most definentally feel it if it was. And it wasn't twisted. However I do have another large hernia on my surgical line in the middle of my abdomen. She told me she doesn't know why I am having so much pelvic pain. I did ask her about this mesh. I was not feeling all this rubbing and pressure and terrible pain there before it was put in. I mean I had some pain from scar tissue but it was nothing like this. She told me the mesh she used has been around for a while. Then she told me to call her once my hernia starts to bulge out more because then she would have to go in there and try to fix it. She said she could maybe do it laprascopically. Ok I was told that things couldn't be done laprascopically because of my pouch. Is this true? I am honestly so frusterated right now. The surgeon that has fixed my prolapsing is not the same surgeon who did my colectamy/j-pouch/and take down. I absolutely feel terrible. I been in alot of pain and very nauseated. And I feel like I should not have to wait for this hernia to get fixed until it starts buldging more. As for this mesh situation I do not know what to do. My g.i. doctor told me that 90% of people who get mesh put in have some pain which can be chronic. I also have cuffitis right now to and a fissure. Which is causing alot of rectal pain. Any suggestions or advice would be greatly appreciated. Thanks!

Jamie

Diagnosed Chronic ulcerative colitis age 12 in March 1997.
Total colectamy January 1998
J-pouch made May 1998
Takedown July 1998
Hernia repair Oct 2009
Total hysterectamy Feb 2010
J-pouch prolapse surgery July 2010
J-pouch prolapse surgery Oct 2011
Original Post

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FM Former Member
Jamie, Im not so certain in regards to your prolapsing situation but im vaguely assuming it could be due to straining as well as the fissure which is a by product of straining as well.. I would consider getting a second opinion or maybe a few more and also suggesting your surgeon to perform a defecography to find the underlying cause or at least a more detailed investigation as to why your pouch continues to prolapse.. nifedipine 0.5% compounded with lidocaine 1.5% also cures fissures i would push your surgeon to rx that asap because you shouldnt have to go through that pain.. im sure some other people can also provide some insight to you on this thread as well..

-god bless
Jan DollarJan DollarModerator, RN, retired
Yes, you can have laparoscopic surgery with a pouch, but if your adhesions are severe, it may have to revert to an open procedure. I had an adrenalectomy laparoscopically a few years ago and was fine.

I also had a mesh repair of a hernia in 1996 and do not have any associated pain. However, there is some growing evidence that these mesh slings can be problematic (generally used for prolapsed bladder), and there are law firms conduction class action law suits about them. I am not saying you should sue, but that your instinct that your pain is related to the pouch sling may be correct.
http://www.drugwatch.com/surgical-mesh/

I would get a second opinion about it. You may need to have it removed. Some people have foreign body reactions to the product.

Jan Smiler
Jamie_M_WJamie_M_WMember
Ok. Thank you for the replys. Thats good to know laparoscopically procedures are sometimes ok depending on the patient. I am actually waiting to hear back from my surgeon regaurding some questions I have. I am going to see if she can just fix this hernia before it gets even larger. I am also going to mention I feel like this mesh is giving me reactions. I have mentioned it to her this past summer and she told me that if I was going to react it would have been right after surgery. Ever since its been in there though I have been feeling terrible. I was never feeling rubbing and this costant sharpness before the mesh. The mesh is keeping my pouch up but I am so uncomfortable. Its affecting my daily activities greatly.By the time I get done even just walking through a store or walking my shih tzu I am in terrible pain. This should not be happening. They told me why I keep prolapsing is because I do not have my uterus anymore and my j-pouch was actually sitting on top of it. So the second time she went in there she made a mesh sling to hold it up. Now I am just afraid I am stuck like this with the rubbing and severe pain. I honestly don't know if she would take it out. The question I have is there any other way to keep a pouch up without mesh? I know the first time she used a couple sutures she said. But it wasn't enough to hold it why it did it again.

I do actually have lidocain that I use everytime I go to the bathroom for the fissure. And I have canasa suppositories also for my cuffitis. Its just hard getting them up in there because of all the rectal pain. I have been getting some suppositories up though. And have been doing bath soaks twice daily. This fissure I have had since this past summer when I was scoped. My G.I. doctor believes its not getting better because of all the bowel movements I have on a daily basis.
Jan DollarJan DollarModerator, RN, retired
I still think you should get a second opinion, as your surgeon is either uninformed or trying to cover herself. Actually, the opposite is true, and it takes a while, at least a month to a year or more, for these mesh complications to become apparent. I am not sure I would want to have another surgery with her. But, if she comes clean and admits that the newer data support the idea your mesh might be the source of your pain, maybe it might be worth it. But, I'd still get a second opinion...

If you had a transvaginal approach, your complication risk is higher, but even with an abdominal approach, the risk is there.

Here is a WebMD article about it:

http://blogs.webmd.com/womens-...ew-fda-warnings.html

And here is the FDA warning about it:
http://www.fda.gov/medicaldevi...otices/ucm262435.htm

Jan Smiler
Last edited by Jan Dollar
Jamie_M_WJamie_M_WMember
Jan,

Thank you so much for your advice. She told me she put it through my abdomen. But she never told me exactly how much was used or what type. She told me a week and a half ago she used strips of it and sewed it to my pelvic bone on each side and made a sling underneith my pouch. I was not told of any risks or anything before it was put in she only told me she was going to use a small piece to hold my j-pouch up so it wouldn't prolapse. But after my surgery she told my husband she sewed mesh to my bone to hold it up. I don't know what to think. I feel like I am a mess in there. This rubbing I feel is a terrible feeling and the pelvic and groin pain has been so terrible it makes me cry. It wakes me up at night. There are times when I absolutely dont know what to do with myself. I take lortabs for pain but they don't even always help. Now I have this hernia to which is going to have to get repaired. I have not heard back from my surgeon yet today either. I think I am going to call down to the mayo clinic tomorrow. I live four hours away from the mayo. I did go down there two years ago regaurding my prolapsing. They had wanted me to go through some biofeedback and therapy which I did. Before fixing it. But it kept prolapsing to the point I couldn't pass any stool. So my surgeon here then put the mesh in and she said when she went in there it was completely turned sideways. The problem is she is the only colon/rectal surgeon in my town. I don't know if I want her to fix the hernia. I feel like I am not being told everything. I mean she told me if I had a reaction it would occur right after surgery. And I am seeing otherwise with the research I been doing online. So I will be making some calls to the mayo in the morning. And I am still going to talk to her about this.
Jan DollarJan DollarModerator, RN, retired
You'd think that using less mesh would mean less pain. But, it doesn't necessarily work that way. We each individually respond to a foreign substance in our own way. You can have a 1000 people before you have no trouble at all, but for you, it is misery. Even the fact you had an abdominal approach does not mean no complications, just less risk for them. This does not mean she did anything wrong, as it appears these mesh products were released for use by the FDA for pelvic prolapse before being tested fully. These problems were discovered after the fact.

So, good idea to contact Mayo and get an indepenent opinion. Your pain is definitely not acceptible. I would think the hernia is a secondary issue and not a major thing right now, but hopefully, they can oth be addressed at the same time.

Good luck!

Jan Smiler
Jamie_M_WJamie_M_WMember
I am so frusterated right now. I just spoke to my surgeon here who did two j-pouch prolapse surgeries. And she asked me how I was doing and I told her terrible. She sked me what questions I had regaurding my hernia. I told her that I also have questions and concerns about the mesh she put in me to hold my pouch up. She said she thinks its fine in there and that maybe I need some physical therapy for spasms. For one thing I have been doing physical therapy which she recommended a while back and am still getting no relief. I know the feeling of spasms and what I am feeling is not spasms it's a total different feeling. This is upsetting me I know what I am feeling. I know my body. This is not normal what so ever. And I told her that. She goes do you want a second opinion. Well, yes I do. I told her the first time she went in and just sutured it I didn't have any rubbing sensations sever pelvic/groin pain after. I Had some pains from scar tissue/pouchitis but it wasn't anything like this. Its a different feeling. My bladder was not leaking then. Until my pouch prolapsed again 9 months later which then she put the mesh in. Ever since then I been having severe pains. This is NOT NORMAL!!! Then she said she could go in there and fix my hernia laprascopically unless there is to much scar tissue then she would have to reopen my main incision. She said when she fixes my hernia she would use a square piece of mesh and attach it to my abdominal wall and she could then also check the mesh in my pelvis to see if it is rubbing on anything because it could could be causing some of my pain. One minute she is telling me it is fine and the next shes saying she will check it when she fixes the hernia and that it could be causing my pain. This is so bizarre to me. I am waiting to hear back from the mayo. They said they would get back to me before the weekend for sure with appointments. I honestly feel like a human guinea pig right now.
Jan DollarJan DollarModerator, RN, retired
I can understand your frustration, but try not to get yourself worked up too much about these communications with your surgeon. Obviously, your surgeon cannot feel what you feel, and she probably wants this to not be about the surgery she did, but about your inability to cope or over reacting. I can understand her desire to have a nice clean record too, but, you just cannot pooh-pooh serious, chronic pain. I am glad she asked about the second opinion, as that means she is being open minded about it.

But, seriously, the hernia should be taking a back seat to the real issue of your pain and other lingering symptoms. I would think the idea would be to fix what is going on inside, then repair the hernia before closing, since that is the simple surgery. The reason she initially said to let her know when the hernia gets bigger is because they generally are not an issue when they are small. Plus, I am not sure you would even need mesh for the hernia, particularly if it is small. So, again, another reason for a second opinion.

It could be that you get the same story from the second surgical opinion. If that is the case, then your surgeon looks golden. I see no down side for you. Make sure that Mayo gets your prior imaging reports and films, and your operative reports too. That would contain information on the type of mesh used. Implants always have a tag/sticker that goes in the record in case there are any recalls or what-not.

Jan Smiler
Jamie_M_WJamie_M_WMember
Ok. Yeah she told me that it was a large hernia underneith my belly button on my surgical line. And said she would use a mesh patch to repair it. My pelvic pain has been going on for quite sometime now along with the rubbing I am feeling. It used to come and go but it's been more constant and has gotten worse. She has known about this for awhile because I have mentioned it to her when I first started feeling it. When I had my hysterectamy I was told I had alot of scar tissue/adhesions in my pelvic region. I don't know if thats contributing to things to. Since the mesh has been in there my pelvic pain seems worse than before that's the point I am getting at. I don't exspect to be pain free. I know she has tried to help me. which I am very greatful for. At the same time it concerns me when I am feeling bad pains/sharpness and rubbing.
Jan DollarJan DollarModerator, RN, retired
Sure, adhesions could easily be contributing and probably were a source of pain to begin with. But, say you are a severe adhesion former, it is quite possible that the mesh was like throwing gasoline on a fire and stimulated even more severe adhesions. That is why I would really think twice about the mesh hernia repair unless the hernia was a big deal, not just a big hernia. My incisional hernia was the size of a grapefruit, and my surgeon said it was completely elective to repair.

Jan Smiler

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