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47 replies

At the end of my rope - please give me some guidance!

FM Former Member
Hi all, I am really at the end of my rope and I don't know what to do. I've had a lot of trouble emptying my j-pouch for the past several years. It worked great for a few years and then it went downhill and I went on an odyssey trying to figure out what was wrong with me. The worse it got, I was frustrated, obviously, but I made it work the best I could. I've been through all of the tests at the Mayo clinic a couple of years ago and they found some pelvic floor dysfunction but really nothing else. The pouch looked good, apparently, yet it doesn't work. A couple more years of just getting by and now I find myself in a real dilemma.

About six months ago my GI here wanted to scope my pouch just to see how it looked. They found an ulcer and a prolapsed polyp, did biopsies and kind of just sent me on my way saying if I wanted a referral to a surgeon they would give me one. Well, the last time I saw a surgeon (back during the Mayo stuff) they said there wasn't really anything to do and due to the fact I have a huge deductible, I just kind of ignored it and went on dealing with my own little personal hell in the same manner as I have for a long time now.

About a week and a half ago, things changed for the worse and I cannot eat anything right now because my pouch is literally and truly not working at all. Where as before I could manually help myself evacuate, now it's all but impossible -- even for flat out liquid, it's just like the pouch completely failed. Turns out I also have a fissure and so the doctor prescribed Canasa and that gave me horrible diarrhea to the point of feeling so week I could barely pick my head up off the pillow. When I went in and told them what was happening they said I need to see a surgeon to talk about what my options are -- if any. Then when I told the PA I couldn't eat anything, she just flat out said 'Well, you have to eat something.' It was like they really didn't understand that when I say I can't eat, I can't eat. Even drinking a protein drink is misery and pressure and takes about 15 visits to get it all out plus hot baths multiple times, tiny bits at a time, all the while breaking out in a big sweat and crying due to so much pain. It's like the muscles at the opening of my bum are so tight it's almost impossible to get a syringe in let alone a finger or anything else. All I do is feel constant urgency all day long and I go from the toilet to the bath and back again 24/7. Also, before when I would evacuate manually, I could go in and kind of push the pouch up and that would release gas and anything that needed to come out. It might take me a few times but I could eventually get things out and moving. Now, it's literally nothing and the pouch almost feels dead. It's like it's impossible to even push it up to get the air or anything out and that's when I can even get in there which takes copious amounts of dibucaine and tears. I've blown through 20 tubes of dibucaine in the past four days and that's in addition to a lidocaine cream the doctor sent me home with. I am at the point where I feel like I can't live like this. I can't really bear another day going through this. I have always been kind of tough and gotten through and made things work but I don't feel like I can hang on at this point.

When I went to see my GI (actually the PA who I like better than my GI), she got me a referral to a surgeon but they can't get me in till July 3. I don't really think they understand how dire this situation is for me right now and I don't know how I'm going to get through until July 3 and then however else long it takes to figure out how to fix me. I am exhausted and I can't work and I can't do anything right now at all besides stay near to the bathroom and a bathtub.

I just don't know what to do. If I go to the ER then I'm pretty sure they won't have a colorectal surgeon that knows anything about J-pouches so it seems like that would be a waste of time and a lot of money that I have to pay out of pocket. If I wait till July 3, I honestly don't think I can wait that long. So I don't know where to turn or what to do. Any and all advice would be greatly appreciated. Thanks you guys...
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S SandraD123Member
I am so sorry for your difficulties. I have been there for sure. My pouch did the same thing. Worked great and then just sort of quit. Mine was dx at the Cleveland clinic as efferent limb syndrome. It took Dr. Shen all of about 30 secs to dx and confirmed with a scope. Because it wouldn't empty it got so large and backed up that I looked pregnant. I dealt with that for several years and finally researched here with all these wonderful, knowledgeable people and found out the Cleveland Clinic is where I needed to be. I had a pouch redo. I am about 3 months out of the final surgery and life is not perfect but so much better than dealing with a pouch that wont empty. So if you can get yourself to the Cleveland Clinic I think you will find the answers to your problems. I wish you the best of luck and would be happy to answer any question you may have.
Take Care
CatinthehatCatinthehatMember
You need more than "good luck". I'm sorry I don't have a lot of advice for you. Hopefully others will reply soon. But It sounds to me like you need to be in the hospital soon. Call your PA again and make sure they realize how urgent your need is. Going to the ER may be the only way to get the help you need. You don't say where you are but if one Dr. can't see you right away are there others in the area? Please keep in touch here.
FM Former Member
Thank you so much. I just left a message for my PA again and let her know that things are even worse than they were when I saw her last week. I had the worst night so far last night and I was up in terrible pain till 5am trying to empty tiny bits out and only slept two hours so I'm sure being exhausted is playing into this as well. I don't think they realized how urgent it was last week or that it's really just not working at all. They did a digital exam and that was so painful that they were only able to go in a tiny bit -- just enough to see a fissure and I think they thought that was the only source of pain. I tried to explain things but I have a tendency to be stoic and so I think maybe I should have just fallen apart which is what I really felt like so they knew how bad I really was/am.

As for this area, I live in Boise, ID and this surgeon that they referred me to is experienced with pouches and I don't know how to find any other surgeons that would be and be able to get me in.

If I go to the ER I just wonder if anyone will be able to get me help because in my experience, a lot of people don't know what to do with J-pouchers. Even some really good nurses that don't have much or any experience with this type of thing so I'm just wondering if I have to go in, am I just going to waste a ton of money by going to the ER and get the same results and have to wait till July 3? Or would they get a hold of the surgeon and bring him in? Not sure.

I guess I'll wait to hear back from my PA today and go from there. Just talking here helps so thank you.
kathy smithkathy smithMember
It sounds like it could be one or more of several things - severe stricture, prolasped pouch, and as Sandra mentioned efferent limb syndrome.

You need to make your PA/GI understand that you need to be seen much sooner than July 3rd. I am not afraid to resort to hystrionics or uncontrollable crying if logic seems not to be working with a medical professional. Mention all of those terms (severe stricture, prolasped pouch, efferent limb syndrome) and see if that rattles their cage a little bit. Mention that you haven't eaten in 'x' days and you absolutely CAN'T eat because NOTHING is exiting. That right there should send a huge alarm to your doctor. A total blockage can lead to a ruptured pouch and peritonitis (more good terms to throw around). They shouldn't be leaving you to wallow in your pain and misery. If nothing works tell them that you'll be driving to their office and sitting there until someone sees you because you KNOW this is serious.

I hope you get this resolved immediately.

kathy Wink
Jan DollarJan DollarModerator, RN, retired
Has anyone suggested using a catheter to empty your pouch? It sounds like you have issues getting your sphincters to relax, and that leads to straining, which leads to things like a fissure. This is sort of a vicious circle because the fissure just makes the sphincters spasm and clamp down more. I never heard of using Canasa for fissures. The treatment for fissures is ointments that increase blood flow, such as nifedipine or nitroglycerine.

I agree that this needs more immediate intervention and it already has gone on too long.

Jan Smiler
FM Former Member
Thank you everyone. I think I made myself clear enough today and the surgeon's office has squeezed me in tomorrow morning. If I can just make it through tonight, maybe tomorrow things will be just a little easier. Whatever the case, it beats waiting till July 3 so I am very thankful.

Hi Jan, yes, I have used a catheter for a long time, actually. It's one of the things that has gotten me through and enabled me to keep the pouch for as long as I have. Right now though, even that's not a viable option. I literally can't get anything in there enough to use it to get anything out without excruciating pain from forcing.:-( As for Canasa, yep, that's what they prescribed -- that and lidocaine/cortisone cream. It hasn't done any good and it's more painful than going without to be honest.

Anyway, again, thank you so much everyone!
Jan DollarJan DollarModerator, RN, retired
The lidocaine/cortisone cream should help some (if you can get it in there), because the lidocaine is anesthetic.

It sounds like the fissure has become worse, or maybe you even have more than one. You may also have a stricture, adding insult to injury!

You may need a diverting stoma until this gets sorted out. Obviously, you cannot go on as you are. If you have complex fissures (your GI or surgeon should be able to tell when you are examined), it is possible that this could be Crohn's related perianal disease. If that is the case, it still does not mean the end of your pouch, but it may mean you need hard core Crohn's maintenance treatment (but obviously, not Canasa).

Fingers crossed you are able to make it through tonight. At least drink plenty of clear liquids and stay hydrated.

Jan Smiler
tammykathleentammykathleenMember
Reed,

I am praying that you can get through tonight on sheer grit and that your visit to the surgeon tomorrow resolves what is going on IMMEDIATELY. You sound like you are in agony which is unacceptable.

I am so sorry you are going through this. Do NOT leave the surgeon's tomorrow without an immediate solution. Do not let them pass you off or act like your pain is overblown. This sounds extremely serious and they need to address it tomorrow.

Again, many prayers and thoughts your way.

~Tammy
L liz11Member
Please try to take someone with you to your appointment tomorrow. Oftentimes someone with you can make the doctors wake up and pay attention to you. And I wouldn't rely on the PA- even if you personally like her more. You need qualified doctors and experienced surgeons caring for you. You are not a standard case. And don't hesitate to cry and or shout if you need to - to get the help you deserve. Do not leave your appointment tomorrow without a clear plan for immediate help.

Also - with all of your problems, I would surely suggest you really go to a jpouch expert. I don't mean a surgeon who builds one jpouch a month, or a GI doc who has 2 jpouch patients, I mean someplace like Cleveland Clinic where they have doctors, like Dr. Shen, who sees thousands of jpouches a year, and most all of them are problematic jpouches.

My story is similar to Sandra's. I sufferred at the hands of my local top surgeon and GI doc who were supposed jpouch experts. Then within a matter of 2 minutes with Dr. Shen at Cleveland clinic, he suspected I had efferent limb syndrome and within one month, I had several more tests, met with surgeon, and it was confirmed I had efferent limb AND too large of a pouch. Two major functional issues that no drug would resolve. I hadn't been able to eat properly for months, was malnourished, anemic, and very very ill thanks to my local so-called expert doctors.

However, within one month of meeting Dr. Shen at CC, I had surgery to create a diverting ileo. They don't let you suffer up there. It was the absolute best thing to be done at that time. It enabled me to eat again!

Good luck tomorrrow. And also was just thinking that someone needs to do some blood tests on you testing your nutritional status. This might help them see how terribly urgent your situation is. And you deserve some proper pain medicine while you are suffering until you get resolution to your issues. Make sure someone addresses that for you tomorrow also. Please be strong and stand up for the medical care you deserve. Think of all of us here with you tomorrow.
samantha1803samantha1803Member
Ditto. I will be checking in to see as well.

This is one of the worst things I have seen anyone go through. I hope you are OK! I have often thought that people that have what we have are about the toughest people on earth! After your recent experience I believe it's true. That doesn't mean there isn't a time and a place to set aside stoicsm. I admire your courage but I hope you can put your health first before worrying how much it costs. Does anybody know if CCFA or any such organization can help people in this type of predicament? I am from the US and was often un/underinsured; it scares me that someone could not just go to the ER if they are on the verge of exploding or rather in this much agony and such a serious medical problem. It is great to see all of the great suggestions from people on this post and I hope something can be put into action for you Reed.

I will be thinking of you until I know this is resolved!
TE MarieTE MarieMember
I just read this and since Reed hasn't posted maybe she is in the hospital getting surgery or treatments - Help. I pray she is doing well and hope she can post pretty soon.

Reed if you are still needing help it appears as your problems are worse than when you went to Mayo. Since you are an established patient there if your doctor's office calls them they will get you in right away. I don't know what location you go to but I was just in Rochester and was very relieved with their assessment and treatment plan.

Them or CC are #1 and #2 in this area so if you are going to have to pay out all of your deductible and they are in-network please get to one of them. If it's out of network deductible you probably would be better in the long run going to them as well.

Unless you want to opt back to an ileo, maybe that's what they are doing for you now.

Hospitals have to take payment plans.
FM Former Member
Hi everybody, so sorry for the delay in responding but I was so exhausted when I got home yesterday that I didn't even open my computer.

The surgeon I met with was really wonderful which was very comforting. Just getting in there and knowing they were taking it seriously made me feel a little better psychologically. Considering they squeezed me in last minute, I figured he would blow in and blow out like a lot of surgeons so I was prepared for that but he spent so much time talking and asking me questions and trying to go over things that I may have to decide. About two hours, all told. They are going to scope the pouch (if they can get in) on Friday to look around and then they are doing an MRI that had something to with a defogram. He said we would have some more answers then and we can decide the best route...He talked about several things including a diverting illeo, and/or a pouch revision as well as going to an end illeo. I think he was worried to even say that one to me and asked very carefully how I felt about it. Honestly, at this point, I am ready for them to rip everything out and give me my life back so I am just open to the best option I guess. Depending on what happens Friday, I think they are planning to do the MRI right then or Monday and then we will decide on a surgical plan and he didn't want to waste any time waiting -- especially because he knows I can't really eat anything and I feel so weak and still have to deal with the pain. He said if I feel like I can't deal with it during these tests that all I have to do is call and he will stick me in the hospital without a second thought so I have to admit, even that's comforting to know. I've gone from not having anyone know what to do to having a surgeon behind me who actually heard and believes that I am in distress and is actually there for me and working out a plan.

Anyway, so that's pretty much all I know at this point and will hopefully know a lot more on Friday after the scope, etc. They put me on some mixture of opium and morphine but I am not sure it's doing much yet but hopefully it will. I'm still not comfortable at all but I think I feel better somehow just knowing things are happening.

I've been doing a little reading on getting a J-pouch removed and going to the end illeo and it seems like it's a pretty big surgery so if that's what has to happen, I just hope I can get through it. I used to be pretty tough with surgeries but in 2005 I had a terrible back surgery with a surgeon that ended up losing his license after killing a couple people so I think I'm just scared now of ANY surgery. Mostly of the pain I guess. That particular surgeon had been the most highly recommended spine surgeon in AZ and I did due diligence before using him so the fact that a lot of stuff was going on without me knowing or finding it out is a bit scary! The surgeon this week came highly recommended by my GI's clinic which is the biggest in Idaho and from what I can find so far, he seems experienced and very kind so I'm just hoping this goes well and I can get through it and get my life going again.

Thank you so much to all of you for posting in this thread and checking in. I'm so thankful for this place. I will keep you updated as things go!
FM Former Member
P.S. I have a very high deductible ($10,000) with Regence Blue Shield. I had to do the high deductible or I couldn't afford the insurance cost, unfortunately. Once I hit the deductible, they start to pay 70% and when I hit the $4,000 out of pocket costs they pay 100%. What I'm wondering is how any of you have dealt with paying something like this? I have to do it...it's not like I can wait and save up. When I was in AZ I had really good group insurance so this is kind of unknown territory for me as far as getting socked by bills. As you can imagine, I don't just have $14,000 sitting around so is there a way to work out some lifetime payment schedule! haha If any of you have experience will hospital bills like this, I would be grateful to hear about it. I assume that I need to talk with the hospital about this before my surgery so can they say no and keep me from getting surgery? Thanks again!
samantha1803samantha1803Member
Hi Reed,

First of all, are you OK until Friday or even over the weekend to wait and see what is wrong? (MRI) I am really concerned about the here and now of your situation. How is your pain and what is your level of comfort or lack there of? Can you have anyhting at all to eat? Is your pouch working at all or are you still trying to manually empty it? I am really worried about you!

I am sure others would really appreciate it if you keep us informed of your status. No kidding I was so worried last night!

As far as the bill goes let me reiterate that I am from the US and have only lived in New Zealand 7 months but my experience with being un/underinsured in the US is tough. I asked everyone earlier if there are any financial support networks that can help someone in these circumstances? I just want your health to be addressed. I don't want to make this a political forum but maybe there are some solutions out there for this. I know that if a woman has breast cancer they can get funding. I sure hate to see you paying off the hospital for the reat of your life.

I am totally thinking about you until this thing is solved.
L liz11Member
Reed-
So happy to hear your surgeon took his time with you, listened, explained options, and has a plan. I have almost walked the same path as you. So here's a little heads up. The MRI and defecogram tests are no big deal. Just ask for a valium before the MRI if you are claustophobic. The defecogram is where they fill you up with barium stuff you drink, and then you sit on a "throne" like chair and poop in front of the camera. Make sure you have a top radiology doctor, not just a technician, in there for the defecogram. They can "read" what is going on better. Sure its a bit humiliating, but this test will show functional issues with your pouch. Scopes and MRIs cannot show your "pouch in action." For me, this was the tell it all test. OH and for the scope.. make sure they drug you. Absolutely mandatory in your situation.
OK then if your surgeon thinks there are some problems and suggests a diverting temporary ileo. .. I would do it ASAP. For me I was in a similar, unable to eat state, suffering terribly, and docs finally found pouch problems. But I was way too sick for them to do more serious operations like pouch redo or pouch excision with permanant end ileostomy. So they gave me a diverting ileo, and that enabled me to start eating and begin to get healthier. It is not such a big operation and it allowed me to get back a better quality of life.
Later on I chose a jpouch excision and permanant end ileo, which I just underwent in MArch. And yes, it is a major, massive surgery, but doesn't seem like its something you have to think about right now. Lots of people can successfully live with a disconnected jpouch and "temp" ileo indefinitely.
And Reed, don't hesitate to go to the hospital if you are doing downhill. Maybe a better route even, as sometimes the tests can get done faster there.
best wishes.
FM Former Member
Just a quick check in to say that I had the scope and mentioned the efferent limb syndrome, etc. They gave me enough drugs that I felt like I was out completely for the scope which is unusual for me but probably a blessing in this case. I'm a bit unclear about what he found in the scope but he mentioned something about something being too long and they also did a biopsy so now it's onwards and upwards to the MRI at the beginning of the week. The good news is that the B&O suppositories really started to give me some relief and I was feeling a bit better and able to eat a little more. The bad news is that the pharmacy didn't have enough to get me through the weekend so I am back to more pain and discomfort. Thankfully they are getting #90 of them for me tomorrow and I will be more comfortable again while waiting to find out what surgery we're working towards.

Again, thank you so much to all of you here. I so appreciate having somewhere to vent and say exactly how I feel. Right now other than being really sleepy all of the time (not sure why), I am definitely doing a little better than I was a week ago so I just have to keep pushing through and hope I get some answers soon.
TE MarieTE MarieMember
Thank God for your new surgeon. Regarding insurance and out-of-pocket costs, I have 2 suggestions. First give them your insurance card and 2nd after the insurance adjusted amount comes through you will need to make a case for yourself. Whatever you do, do not put it on a credit card and if they try to say you have to they are wrong. Most hospitals are not for profit's and do so many charity write offs per year. Explain your financial position and ask for help. I am assuming you will be missing work while you recover. Stress this and prove to them, if necessary what your household income is. Hopefully they will write it all of. Even if just part of it would help and make a payment plan with them for $20 a month if need be. If they are hard on you tell them when you get back to work you will pay them as much as you can monthly.

My step-sister ended up in ICU for a week, she was on unemployment and between the hospital and the county her bills were all covered. She had no insurance at all.

Just focus on getting better and be upfront with the hospital but it would be better if you did that when leaving and not at admittance. It doesn't bother go show them how ill you are when you are discussing this as well.

As long as you make consistent payments per month they can not send debt collectors after you.

Please keep us up on how you are doing.
I itsnotsherryMember
Reed,

I am in a very similar spot as you are in, and have been for quite sometime. My surgeon does not want to do pouch revision surgery, as I am high risk for infection. I basically live in denial and hope things get better, though I know they wont. I am just not ready to go back to a stoma. The doctor recently put my on hydrocortisone suppositories. You refer to B&O What is that? Mine are helping with some of the swelling, but the rectal pain is incredible.

I wish you luck! Please continue to keep us informed!
kathy smithkathy smithMember
Reed - I wonder if they found that the rectal cuff was too long. There have been members here who've experienced a lot of pain and agony and have found that the surgeon had left too much rectal cuff. And then I also looked up efferent limb. Like itsnotsherry, I can't quite understand what it is but it sort of sounds like it's something that could also be 'too long.' Hopefully Jan can explain this mystery.

I'm so glad you're doing better. You had a lot of people pretty worried.

kathy Big Grin
L liz11Member
Efferent limb is when the exit path from the pouch to the "outside world" is too long. What happens is that it ends up angulated so it becomes functionaly impossible for the pouch to completely empty. Basically think about something getting stuck in a bend. So sometimes you may be able to twist and bend your body when emptying in order to get this area to straighten in order to empty the pouch. But if its very bad, even that won't work. So basically without the pouch ever being able to fully empty... it almsot guarntees permanant pouchitis. They will be able to see this on a defecogram. Sometimes by keeping things more liquid - through lactulose, and also using the belladonna suppositories to relax things it may help to get things emptied. But not always. I was diagnosed with this as well as too large of a pouch. Guess my initial surgeon didn't bother to realize I was a 5'2"petite short waisted woman. Seems he built things for the average male patient.
Jan DollarJan DollarModerator, RN, retired
The efferent limb can be the rectal cuff (as in too much rectum left so that issues like Liz describes can happen). It also occurs with an s-pouch, which has an ileal efferent limb (j-pouch does not). This is one of the primary long term complications of the s-pouch and why it was largely replaced by the j-pouch. But, if you have issues of mesenteric reach during pouch surgery, sometimes an s-pouch is the only solution, since it requires less of a reach.

Jan Smiler
FM Former Member
Hi all, another check in. It's been a really tough two weeks but I am hanging in there. Kind of...I had the MRI last Tues and it was pretty bad getting the tube in. I broke down it was so painful and then I think I was so embarrassed I broke down even more. Anyway, my surgeon was out last week and got back today and he just called me with the results from the MRI and I'm sitting here pretty upset so I thought now was a good time to come let you know what's going on. Unfortunately he said looking at the MRI that there wasn't anything definitive about what he was seeing...he said he was surprised because he didn't see what he thought he would see like a prolapse. He mentioned that some of my small bowel moves down into the vaginal/pelvic space when I try to go and he also said that I have two cysts and he's wondering if the cysts are what has caused this latest episode. He said there wasn't anything he was seeing that would make him want to just shoot the gun and remove the j-pouch and I think this is what has me the most upset. I wanted him to find something that made the decision I guess. So I am supposed to go in on Friday and talk to him about what to do for surgery and he talked about possibly going in and draining the cysts and seeing if they have anything at all to do with what's going on. He said if we did that we would know within 5-10 days if it helps. But then of course if it doesn't, I guess we're back to the drawing board? Or just go in for another surgery? I just don't know.

The thing is, I just can't imagine that cysts have been my problem all along so I don't really know what to think. I've had issues for quite a long time but this sudden onset a little over a month ago and what I've been through this time with so much pain and not being able to get anything out, I don't see how a cyst would cause the muscles down there to be so locked down. I just feel so lost right now. I can't really afford the time or money it would take to get a second opinion and I'm not even sure I want one. He comes very highly recommended so I think I'm in very good hands but this is just not at all what I was expecting. I really thought he would call and say A) there was something to repair and make the pouch work or B) the pouch needs to come out. This limbo diagnosis and that's basically what it is because he said it may be a question of just going in and seeing is just so hard to take right now.

I honestly don't think he has any clue just how badly I've been doing and how miserable I am 24/7. If I eat anything, I pay, big time. I don't sleep, I'm uncomfortable all of the time and it's misery to try and get anything out of my pouch and takes over 24 hours or more and 50 trips to the loo not to mention about two tubes of dibucaine for every two trips. If I don't eat, I feel so weak and exhausted I just want to go to bed and never get out. And now I don't see him till Friday and then I asked how long it would take to get on the surgery schedule and it was another week to two weeks. Intellectually I know I will live and I can get through this but emotionally right now I'm just not so sure. All I'm doing today is crying like a big baby and that's pretty unlike me. I used to be tough and now I feel like I can barely get through any of this. I'm tired of being in pain and I don't know how much more pain I even want to deal with. Ugh. Sorry to vent you guys but you are all appreciated so thank you for listening.
TE MarieTE MarieMember
Reed,

I know what you are talking about. While my problems have not been the same as yours I've felt hopeless, like I was going to die, etc.

It's good to cry and let it all out. You are right we can tell ourselves intellectually but can't always convince our selves.

It sounds to me like you need to be in the hospital right now. I don't know what your insurance covers or not. At a minimum could you call your doctor? The answering service will get a hold of your doctor or whoever is covering his calls. You need to explain that you can not function at all and can't wait any longer. It wouldn't hurt if you let your emotions show, like a shaky voice or crying.

He probably doesn't understand how bad you are. Do you have anything for pain? I know we are not supposed to take any NSAIDs but ibruprofen 600-800 mgs is the prescription dose. Before it was an OTC medication my doctor prescribed it for me in that strength.

I hope you can get some relief today.
tammykathleentammykathleenMember
Reed,

I am so sorry about this "limbo" diagnosis, as you put it. You really need to know what is going on and the results didn't really say anything.

I also have ovarian cysts and when my surgeon found them she almost leapt with joy because she could say my pain was due to these, and nothing pouch related. That's a load of crap. The cysts may be bothersome, but there is no way that they could cause this amount of problems that you are experiencing unless they are the size of watermelons.

I agree with toughenough that you belong in a hospital. I completely understand why you are not eating, but at the same time that is making your weaker and more exhausted. At least in the hospital you can be fed and hydrated through your veins and not your mouth/guts. You sounds like you are in agony and if the doctor knew how bad you were, I am sure his/her recommendation would be to get to the hospital.

I am still praying for you. Please think about going in so that SOMETHING has to be done to "fix" you. Sometimes the best surgeons in the world can miss something that could take away this pain.

And cry all you want-you need to.

~Tammy
FM Former Member
Hi Reed,I`ve read all of the members reply`s and not once is there any mention of family helping you out.Is there anyone who could help you both emotionally and phyiscally in this nightmare your in?Reading what you are going through made me weep,because you and I are walking in the same pair of shoes so to speak.My nightmare has been at least 9 years long now.I too have seen my share of doctors and so called "surgeons" with pretty much the DX you`ve gotten so far.I do know the pain and exhaustion, dispare and hopelessness.I wish I lived a stones throw from you so we could at least keep each other company at 2 in the morning,all night long for that matter.The one difference between us though is that I found my pain relief in the form of OXYCONTIN.360mgs of blessed relief for 8 years day in and day out.The trade off was that this led me down the darkest most horrifying road one can go down.That road was called addiction.My life was for 8 long torchered years on my couch being out of it most of the day and being on the toilet for the duration of the night.Thank God the manufacturer stopped making this wonderful,devilish,total pain relief,total addictive little pill.I can honestly say it saved my life.Right now I`ve been switched to MS Contin 460mgs of that a day along with other nerve damage pain relief medicine it`s called Gaba Pentin 2700mgs day of that and last but not least Cipro 1,000mgs of that for my pouchitis which I have had since day one of the take down the cipro by the way has ruined my knee joints I need help getting up from a seated position the longer I have sat the more excruciating the pain.All this because the reknowned "specialist" that did my pouch surgery touched or damaged all sorts of nerve fibers down there.I came out of the surgery being impotent for life,a neurogenic bladder and a less than fuctioning j-pouch.The latter two meaning that both my urine and poo have to be forcibly pushed out of my body,I haven`t gotten to the point of cathertization yet but I was told that it will happen one day.I have to literally strain to the point of my eyes almost bulging out of my head to get everything out of me at each toilet visit add to this the butt burn and the pain that feels like someone is inserting a red hot fireplace poker up my anus.I kid you not there are more than one night that I am hanging on to my sink for dear life having a bowle movement.I too have stopped eating for fear of what will happen during the middle of the night.All I can tolerate right now is ice cream or frozen yogurt.I sincerely and ferverently pray that you find that the solution to all your pain and dispare is just one glorious day away.I also pray that your next post will be filled with nothing but excellent news.
R RocketMember
Reed, I agree with Copperhead too and it saddens me that there is no mention of family what-so-ever. God I hope that is not true because you need that support.

I suffered for 8 Yrs with UC. Then I had a J Pouch in 1994 and early on, I constantly had problems with pain and bleeding to the point early on, I would feel good for about a month, then feel like crap between 12 and 14 days. It was a vicious cycly and there were plenty of days and nights crying.

Constantly, I was always miserable for the most part and complained quite a bit. The worst part in dealing with this was having no sympathy from soon to be ex-wife and her family. The family would complain to my wife that I am talking about my illness again. This only added to the stress and fatigue I was dealing with.

When one of my sister-law got engaged and was having a party, I was so miserable I didn't want to go because I was suffering so bad but I was forced to ago. Of course my butt was burning from frequent bathroom trips and pain. A month later, a friend of my wife's family died of breast cancer. I attended the mass and luncheon they had and was gone about two hrs from work. The worse part of it was at the luncheon, my wife's two sisters, BIL, BIL to be, and two of their friends came to my table holding their gut and laughing at me imitating me when I was in such pain at the engagement party. If I had a whole in the floor I would have jumped in. As it was, I excused myself, got into my car to go back to work, and cried my eyes out because they hurt me so bad. Not once did I ever get an apology.

To top it off, I sent them an e-mail telling them how they made me feel, and they shared that with my wife who took offense with me just like the rest of them like I did something wrong.

Thankfully, I only see this family once a year which is more then enought until I am divorced.

Rocket
FM Former Member
Hi everyone...it never ceases to amaze me the kind and caring people on this site. It's so comforting to have people who listen and understand. I'm so grateful for that I can't even tell you how much. I wanted to let you know that I had my appt with the surgeon this afternoon and we talked for a long time -- over an hour again. One added thing to the mix is he got my biopsy results back and I definitely have a lot of inflammation and he says pouchitis which I didn't even realize. I used to have chronic pouchitis but with everything else going on it's difficult to determine just how I feel or what's happening so I guess I shouldn't be surprised. Anyway, to make a long story short, he talked again about how the pouch looked very good and how he just didn't see anything that would be causing the current issues and how difficult that must be for me because he knew I wanted straight out answers and he just didn't have any. He did consult with someone else on my case (I guess another surgeon and the radiologist) about my defogram results and one of the things that really did stand out is the fact that my sphincter muscle does the exact opposite of what it should do when I try to evacuate. It just locks down, basically, as well as the pelvic floor issues that I already knew about due to some testing I had done a few years ago at the Mayo clinic. So these things brought up a discussion about a few things that he wanted to try with me before pushing the go button on removing the pouch altogether. I told him that if I could just feel a little better and get some relief that I would be a more willing fighter to try and figure out what my pouch's problem is and he knew I was ready just to be done with it so the decision was basically left up to me as to whether try a couple of things first and see if we can save it or just go straight away and get it removed.

So, I am going to try...at least for a bit and see what happens. He wanted me to start on antibiotics for the pouchitis (Cipro which I've tolerated just fine in the past long-term), then he wants me to go in for electrical stimulation of the muscles down there multiple times (I think he said 3 x a day for a bit) and then he also wants me to start on Humira and see if we can get any response from that with my situation. If all of those things cease to bring any good results, then I will have a pouch removal and an illeostomy. If they do bring good results, I told him that I need them to be better than I was before this latest episode because the problems had been going on for far too long and I didn't want to live like that anymore.

At any time I can change my mind and cut to the chase but for the moment I will give a college try to this plan and see what happens. I don't know what the right decision is to be honest...I'm kind of going into this with a pretty cynical attitude which probably isn't great but it seemed like I should at least try. I felt no pressure to do so, however, so I don't want to give you the impression that I was being told or pressured to do this. This is on me, ultimately.

Also, I know some of you are worried about me not having any support or family but my parents are in the area and they have been wonderful. They've always been wonderful when I had anything going on so I do have them for support as well as a friend or two who semi-understand. I'm single so no husband or boyfriend/live in support but I'm ok with that. If I need anything, my parents are here and even if I needed someone to move in and help care for me, my mom would be here in a second. It wouldn't be the first time she's been through the mill with me healthwise. Thank you for your concern, though. It would be tough to go through this completely alone.

To all of you who have shared your stories, please hang in there and feel better. I know all too well how you're feeling and no one should have to go through some of the things we do.

Thank you again for your guidance and care. Fingers crossed better things are on the way for all of us.
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