When I'm as sore as your describing, I often cannot insert suppositories. I would try hot baths as often as possible. Use the nifedipine a few times a day if you can try a little Vaseline on the suppositories as that will help with insertion. Sometimes if you have built up scar tissue around the anastomosis. It is difficult to insert the suppository. I have noticed mine is in a tilt a bit since the surgery.

Ok, I'll try the Vaseline tomorrow night. I just did a soak. It's spasming so badly.. When you inserted the supp did it feel like it scratched areas and poked around? Did you try oral pain meds at all?

If Vaseline doesn't help, try KY Jelly. Good luck!

Try taking oral pain mediation a half to a hour before inserting. Lay in bed on your left hand side. Use K-Y lubricating jelly, put some on your body and some on your suppository. You might want to put on a glove. Bend your knees slightly and lift your right leg slightly and insert the suppository. Afterwards lay there for as long as you can and then just roll into a comfortable position and stay in bed.

I had a hard time using suppositories with c-diff as it was really swollen inside. You don't have to get it that far up, just past the cuff. It is important to stay in bed as you've probably figured out gravity works quickly with our pouches.

If you have a lot of BM's at night you might want to try inserting the suppository during the day. I do that as the directions say to have them inside for at least 3 hours. I wait until I'm pretty sure I won't go for 3 hours which is usually in the morning.

I hope you get some relief soon.

I called the dr today. They said there was nothing else they could do... I'm not considered a surgical patient. The GI at Mayo sends me to the colorectal and vice versa. I said YOU CAN'T LEAVE ME LIKE THIS!!! I used a Lortab last night and it did eventually help. They said they won't prescribe pain meds for this. I was like, then TELL me what you can do bcuz I can't live like this!! Of course, my dr isn't there, which is how it seems to work there at Mayo. She's going to talk to the other surgeon then call me back. I need to find better medical!!! I said that if they had no other ideas and won't prescribe pain meds then I would have to go to the ER and they never know what to do with me either... I literally cannot even sit!!!!

oh margie.. I feel so terrible for you. I too have been through the doctor toss game where they treat you like a hot pototo and no one wants to touch you. And it really really sucks. A few ideas for you:

do you have a PCP that you like and you are comfortable with? If so, can you get him/her to fight the battle for you to get you into a GI or colorectal surgeon.

Have you resorted to crying on the phone yet when you talk to the idiotic receptionists that won't give you appointments.

Do you have a significant other that can call these idiotic receptionists to try and get you an appointment?

Can you pretend something far different is wrong just so you can get in and see a doctor. Say tell the GI office that you have lost tons of weight and are throwing up or something.. just to get an appointment.

I came up with such a great list.. because I have had to use all of them! Anyways, I hope one of these things might work to get you an appointment. But I suspect you are going to get more help with an IBD specialist GI doctor than with a surgeon.

In the interim, I think how TEMarie described the process might help you, especially the part about taking a pain med 30minutes before or even a valium (maybe your PCP can at least prescribe that for you) also.. try to relax first. Music, heating pads, anything that might work for you.
hang in there.

I hate my PCP. Very uncaring as well. We are a military family so we're very transitional. I have tried a few here but I haven't been lucky. So basically, he's out. I'll save you THAT story. I was very graphic with the nurse that called and did my best to color the picture so that she may understand. I'll let you guys know what they say IF they call back. If they don't, I'll be going to the ER tomorrow. Jan had mentioned before about getting a second opinion from Cleveland clinic in Ohio. We just found out yesterday that we're moving to Ohio in Oct so as long as those orders don't change we'll be close enough there for me to go. So, I have THAT at least. I'm going to try the Vaseline or KY tonight and pray it works. Thanks all.

Try hemorrhoid cream. It usually has a topical anesthetic. K-Y probably won't do much because there's nothing in it, but it's a great lubricant. If hemorrhoid cream doesn't do anything, you can even use topical gum anesthetic, like Anbesol or Oragel. If it's safe for your mouth, it's OK in the butt. Might sting at first, before it numbs.

It won't cure anything, but might help with the symptoms a little.

Jan )

Margie,
It definitely took me some time to get used to my tilted anastomosis ( best way to describe it). Yes I did have some scratching feelings, hence the reason for the Vaseline.
Hope you are feeling better.

My Surgeons and GI's have been the worst at prescribing pain meds. My PCP prescribes them. She prescribes all of my medication. If your Primary care doctor is a jerk can you get an appointment with another doctor in his office, preferable a female doctor. It's all around by your female parts and your bladder. I had a bladder infection in the midst of all of this once when I ended up in the ER. Boy did I feel stupid. The first and only time I go to an ER and all they found was a bladder infection! I was in that much pain.

You need to get pain medication and I know I'm saying a dirty word here, if you can't there's always ibuprofen (4 x 200mg) 800mg prescription strength. It's no good to take as it's an NSAID but my surgeon actually told me to take it for paid after my surgery. He would only give me a prescription for 30 Norco. I'm not a medical professional.

My Internist has been prescribing pain medication for me so I really think that is the way for you to go.

Jan is right about the prep H lotion/cream it helps with the symptoms and is supposed to shrink inflamed areas. I used it some before I found out I had cuffitis.

They put in a new compound but I didn't have time to pick it up before they closed... I can't remember the name of it. I used a mixture of everyone's ideas and got the suppository to go in Thank you guys so much for the suggestions. I'm so blessed to have you all. Here's hoping it works tonight!

I hope you find some relief tonite. It's so frustrating when medical professionals ignore your symptoms ans pain as if you are making it up.....or bc they can't think out of the box.

I am able to get Valium from my therapist....originally for anxiety and sleep, but she doesn't hesitate to tell me to take it for painful exams, etc. she is of the mind that there is no need to suffer and be in pain.

Unfortunately, too many docs are still of the mind that RX pain meds are taboo to prescribe.

Anyway, my point was to offer another option for obtaining pain meds that is perfectly legitimate.

Good News, hopefully the suppository will bring some relief and you can pick up whatever they called in tomorrow.

My Internist is like Kia's doctor. When I was in my final UC flare from hell my GI's office would only call in an antispasmodic. After a few months of this I was in so much pain I called in and asked for something stronger and the nurse said that should cover it. I said but what if the pain gets worse over the weekend and she said go to the ER.....

The following week I had an appt. with my Internist and she said you want something for pain I'll give you something for pain and wrote me a script for Tramadol. That helped very well until the surgeries. She knows the total story of me and everything that is wrong including my fibromyalgia and other health problems.

Well, it definitely helped. Although, things are pretty slow moving at the moment but its not spasming I forgot to mention that I also started with some stomach pain and kinda felt pouchitisy, so I took a Cipro. Hopefully it'll all work itself out soon. Boy do I hear what you're saying about pain meds. Drs., especially around here, think they're taboo. I'm going to try a new PCP. Hopefully they won't be a schmo... Thanks guys

Doctors tend to get (appropriately) nervous when patients simply demand opiates (or "strong pain meds"). They are generally willing to have the more thoughtful conversation about a plan to get you out of pain, which (hopefully) includes understanding what's causing the pain, and a plan to deal with that, if possible. It is, in some sense, a medical failure when the best they can do for you is daily doses of opiates without an end in sight. It ought to be a last resort, IMO, and there really are negative consequences to that path, but there are plenty of negative consequences to disabling pain, too. Pain Management specialists tend to be the most experienced with getting it under control with the fewest side effects and long-term consequences.

Scott F, If I was pain free I wouldn't be asking my doctor for pain medication so think your post is ridiculous. I am not saying you are ridiculous but that the doctors that think that way are!

I don't think hospitals are utilized correctly these days. They throw us in there when we are in an acute state. Or they have us go in for one test, read it and a few weeks later talk to us about it. I think they should do things like they do them at the Mayo clinic and probably like Cleveland Clinic. Do all the diagnostic testing around the same time frame. They should also include, if relevant, examinations by rheumatologists, neurologists, gynocologists and psychologists and any other specialists as needed.

This way they will have as close to a snap shot of the patients medical condition at one point in time as possible. Then they can say if the patient is experiencing pain or not. Otherwise they have no idea. I can't speak for anyone else but the last thing I want is to be in this or any other pain. I do not get high from my pain or any of my medication and still have pain when I take it. It's dull and always here.

I believe doctor's should be able to tell the difference between drug seekers and those of us in pain. We are long term patients that have been seeing them long term for real pain causing problems. What is their problem?

Sensitive subject to be sure. But, I think the point is that there are so many drug seekers out there, it is tough to tell the difference. It is not like there is a litmus test for whether your pain is real or imagined (or withdrawal type pain). It is purely subjective. So, that is why it is important to find a doctor you have a rapport with and stay with him/her. Doctor hopping is another sign of drug seeking. That does not mean if you hate your doctor, you are seeking drugs when you try to find a new one who understands you. Being someone who does live with chronic pain, I understand what it feels like to have to complain to the doctor about daily life. I feel like a wimp when I do, but I know that is the only way for them to evaluate what is going on with me. My rheumy says she can tell what pain I am having by watching my face when she is examining me.

Yes, it is unfortunate that most health care systems are not set up with all specialties coordinated with common access to records. But, even in the setting where that is the case, it takes a very good primary doctor to make sure that the appropriate specialties get involved. There are times when it is just overkill to have every test available and have every specialist weigh in. But, even then, it seems better than having all these separate entities who each want to do their own tests. That just creates waste in my opinion.

I think what Scott was getting at is that the doctors can feel like they have failed YOU when all they can do is give you pain medications. They want to fix things. I guess that is where pain management is a good thing, because the focus is on effectively treating the pain with the least amount of risk. They leave treating the cause up to the other guys.

Jan

Margie,
I am so sorry you are going through this. I am a pelvic floor physical therapist, also with a J pouch and with much knowledge about how you are feeling and treatment options. Have no doctors recommended pelvic floor Physical Therapy for you yet? I suggest calling on of your doctors and asking for a prescription for physical therapy, and looking online for the closest one to your location. You can find a PT that does pelvic floor on the APTA (american physical therapy association) site under FIND A PT. This will change your life.

Oh where to start... I guess when I get up the point that I feel I need pain meds, it is a real need. I do NOT like to ask for them. Drs have made me feel like I'm asking for something illegal and unnecessary so I have to be in bad shape to even ask. It's sad that its like that. But it doesn't help that these people in these medical offices are so apathetic. The nurse treated me like I was annoying her and said I'd just have to wait it out. Who talks to someone like that??? How would she treat me if I was her family?? At the end of the day, I know I always treat others how I would want to be treated. I get that there are pill seekers, but the new prescription online files show what you have been prescribed for awhile. They can see that I have not been prescribed anything for a very long time. I have done the pelvic floor therapy and it was very helpful. I was having female issues along with pain and the PFT did change my life. It was amazing. I think I may ask if they will put in for more therapy focusing on the pouch issues. Being able to get those suppositories in for a couple nights in a row really worked. They put in for some new compound that I'll try tonight. Thanks for the suggestions

Margie, I am so sorry that you are getting this treatment from the very people who are supposed to be caring and helpful. You'd think that people working in the medical service field would have some natural empathy and compassion. But, my experience is that for whatever reason, sometimes people gravitate to exactly the wrong job for them. They not only lack compassion, but they actually seem to dislike people. Why on earth are they working in a people oriented job? I can understand being burned out from giving too much, but too often these twits haven't even been at it long enough to be burned out. I wonder if they saw "be a medical assistant and have a great career" on TV, and somehow thought it would be wonderful. I've seen my share of professional nurses who were jerks too.

I've been very lucky doctor-wise, pretty much all my docs have been attentive. But, I have had a few cold fish...they didn't last long.

Hopefully, you can let these doctors and nurses know how they make you feel without alienating them. I know it can be awkward, but it probably will need to be said eventually. This is just plain wrong.

Jan

I'm sorry that it sounded like you should have every test there was, or as Jan said "an over kill". That's not what I meant. I meant the tests indicated from the tests given regardless of the specialties. A CT scan or pains might indicate a gyno and a GI test. Patient history could also include neurological, psychological or other problems.

I've had the run around of going from one specialist who says the problem I have isn't in their area it's in another specialty. I've gone to the other specialist who says the problem isn't in their area, etc. They've had me running in circles. I went to 7 different doctors before I found out what was wrong with my feet. All the time they were getting worse and worse. In there I had tests, appointments to find out the test results, shots, came back in 6 weeks to see if the worked etc. A lot of wasted time. If they were all working together to figure out the problem I believe it would have been figured out sooner.