Why do I have low pelvic pain and rectal pain so often?

Oh brother Gilda, you need to get either a CT Entercolysis or CT enterography with Cine Loop imaging done. Either of these tests will tell if you have adhesions narrowing your small intestine or maybe some parts open but scarred and non peristaltic; after this many surgeries that may be a possibility. The liquidy output may be trying to get past a food bolous? OR the happier version would be you may have some functional ill such as celiac. Ever been tested?

I would guess you have adhesions if you are in this much pain.

Another thing that may be going on is that you may be having active disuse colitis in the unused part of your intestine. This can be determined by scope and cure is Anusol AC, Canasa, then butyrate enemas in that order.

Ask your docs about all this. I know what you mean about them giving up. Maybe go somewhere new for a look see. A fresh start?
GOOD LUCK, sorry you are having all this. One never knows and oh to go back in time, but we can't so onward we trek for cures. Hang tough, Rosemary

There is a doc at UCal San Diego named Mark Tallamini who is supposed to be good. Could you get into see him?

I am working with my state senator to get the risk of adhesions and their ramifications put on pelvic and abdominal surgery consent forms. They are a very real risk that is rarely if ever mentioned by any surgeon.

I had to have my adhesion lysis and ileo doe the massive internal scarring but would not have had any other elective pelvic surgery had this risk been on the consent form. These forms need a major overhaul.

Prior to my needed lysis and ileo -n addition to obstructing I hjad sever pain down my incision line that wrapped aroind my rectum. Could not stand it. Thank god my lysis and ileo doc at lahey took that away.

One question if you ever need lysis after all other open ops can they do it or is it once open always open?

Gilda google clearpassages.com they use the wurn technique of deep tissue massage for pain adhesions not right for every situation but may be worth a try. Inmeantime call Dr.(Allamini at uc sd he is one of the top gi docs out there. I have this heavy feeling above my stoma that is always there. No hernia, so far no obstruction, and so far no pain. I gotta hope that whatever it is just holds at bay and count my blessing no pain. I feel for you.

Docs hate lysing adhesions as it is hard but if you need it you need it. Doreen who is your lysis doc? .iklos and Moore in atlanta do the lysis I know. Rosemary

Hey Rosemary I am in Australia and my surgeon Dr David Clark in Brisbane takes care of my adhesion surgeries. I am annoyed that I wasn't informed about the problems with adhesions, it is extremely painful and floors me when it hits. It is often when I put any kind of strain on my stomach.
Doreen

Yeah Doreen,

I would not have had my pelvic floor surgery Had I known the risk of small bowel adhesions. This lead to the needed lysis and ileo which saved my life.

So I think for the elective surgeries as my pelvic floor one was, that that risk should be on consent forms. For the needed one, the lysis and ileo, the it would not matter as I had to have that to live.

I hope I get the bill passed to have the risk and it's ramifications put on elective surgery consent forms. None of us would have elected the elective surgeries had this been known. BUT not all people form adhesions that are bothersome, but big deal, for those of us who do, the % is 100%.

Sorry you have pain. How often do you have to have lysis done? Does your doc use adhesion barriers. I had seprafilm that is big here in the US. Rosemary

Oh Gilda,

INTERESTING!!!!! My stomach feels "blocked" above my ileo ALL the time even when it is gushing out chocolate or some other super thinning food. My PT thinks it is scarring in the muscle layers as I have no peristomal hernia as verified by my surgeon plus I see no peristomal hernia. The real food blockages I got were from a lot of mashed potato! Heavy Dense and starchy! That is when I had my CT Enterography. After the blockages were all cleared, All they had me do was not eat or drink anything in the a.m. and when I got there they had me just drink MASSIVE amounts of plain water as anything with any substance or flavor would come out of my ileostomy and defeat the purpose. The purpose is to distend those small bowel loops as much as possible. I had to stop drinking after about a quart of water and had to drink it as fast as I could. They said as long as I felt full that was fine. Then they sent me through the CT machine with some iv iodine contrast.

My current surgeon saw me after and actually showed me the images on the screen. All small bowel was wide open and stoma was open could even see a bit of gas coming out of it. He said it also showed normal transit. So my gassiness and speed ups and slow downs depending on what I eat are now being called functional. I know if I ever had an actual adhesion reobstruction or something glaringly dramatic he would take appropriate measures and re-evaluate.

The place I got the info on the CT Enterography with the Cine imaging was actually from the radiology dept at UCSD. They said they could add the cine image to see if there are any fibrosed or scarred segments. They said they have never been asked to do this to detect adhesions but they said there would be no reason they couldn't. The cine imaging in CT Enterography they said is normally done for Chrones or colitis patients.

So in a round about way via an email I ran this by my current surgeon. I did not get a definitive answer about the cine imaging and have not yet checked with the radiologist to see if they did already include it in the CT enterography I had. But I obviously have peristalsis or I would be reobstructing as in vomiting poop and that is not me so far anyway. So far so good and 4+ years . At this point I have to get my combinations of food correct.

Re: one of your questions, I am not sure but I think that the head colorectal surgeon IS the head, at least at the hospital I go to. BUT it could be a rotating position at some hospitals.

YIKES! INtersting about Dr. Talamini. BUT some of the top surgeons advise against surgery or try to discourage from it. YET they do not communicate WHY! They are brilliant mechanics but sometimes not so good communicators. AND we sometimes do not utter the simple words can you explain?

My current doc is a great educator and communicator. Sure hope all my issues now are dietary and functional, but I have to believe they are unless something horrific happens.

I've been through so much that now I don't hesitate to ask anything of anyone. I no longer have docs on a pedistal but that is easier said than done. And my current surgeon makes it easy as he is the type who just sits right down and has what feels like anyway a normal conversation with you.

The bag itself does not bother me. Depending on what I eat I empty varying times per day. I have to avoid sugar as that really increases output for me.

I even had an ultrasound of my gall bladder thinking something else may be at play.

Turns out my dizzy issue was an inner ear balance system loss and not all dehydration related due to being an ileostomate. So look for nonrelated issues.

I find that just plain water is better for me than a bunch of sweets. SOunds like you need the input of a GI doc too. All this gut stuff is SOOOOO complex.

You also need your B12 and Methylmalonic Acid levels checked with blood work for your tiredness. If B12 is in low normal range and Methylmalonic acid is high then you have pernicious anemia and need monthly B12 shots. The end of the small intestine is what absorbs B12 and with an ileo we tend to get PA. TURNS OUT I had Pernicious Anemia years prior to needing my ileo only it went undiagnosed until after. PA does not just develop overnight.

What food cause a blockage for you? try and see if you can avoid those foods. Drink 8 8-oz glasses of water per day. I eat very bland but my blood work is great. You can get protein without eating a side of beef. Get some Show Me the Whey protein powder and mix with milk or yogurt. Take liquid vitamins or crush some pill vitamins. Go to a naturopathic doc and they will test every bodily fluid you own. That is how I found out I lacked Vit K. OUr colons make Vit K and without the use of mine I was getting no Vit K. Naturopathic docs are super in addition to regular docs. They work with what we have and what we are lacking.

If you can, try and get SOME sort of exercise. I feel soooo much better after I move. I realize if you have adhesion pain this is easier said than done.

Glad you posted.. I think this is a work in progress for a number of us. I know I'm always working at this. I have to get with it for another cruise in Jan then Russia in April and May. Still ballroom dancing for exercise. I gotta lose some weight. Too much ice cream for me.

Don't worry about not being positive if you are not in that space right now. This is what these boards are for. I am seeing a PTSD counselor who is great. Took me 4 years to find the right one. It is helping a lot.

Hope you find a way to feel better. I ate a ton of sugary crud today and have emptied my bag about 10 times but sugar is like a laxative to an ileostomate so what can i expect. If you get a blockage, do you throw up or is it like a dense food you need to break down to get out of your stoma? Grape juice and coconut water and hot tea work for me. Even if I get just thickened poo, all this will thin it down. Alcohol is a real thinner. Go easy on this. This is like a gut purge for an ileostomate. Yuck! but if needed to break down a thick effluent, then what a way to go! hehehehe!

Best of luck. Post back if you have more questions. Rosemary

Gilda I completely understand the way you are feeling with the bag, I still feel that way at times too as it has not quite been 3 years since my surgery was done but its so much better than they way my life was before or I should say lack of life. My surgery was done as an emergency so there was no time to get my head around it so I guess thats why I still have my down days too and dealing with adhesion pain on a daily basis gets me down. I do have to have surgery to correct this again but I am also not wanting surgery again right now so I am dealing with it as best as I can for now.

Rosemary, all but one of my surgeries were done lapro and that one was a right hemicolectomy. I have had the mesh inserted for one adhesion and soon after that surgery I have more that need attention. But I really can't face another surgery right now either so I am postponing for as long as I can deal with the pain, in the meantime it does worry me that I may become dependent on strong pain killers. So I try to go without as much as possible, Stay strong Gilda and hope you feel better soon. Take care

Doreen

Hi Gilda,

Glad I could help. Last night I ate chocolate. Auugh I know better. Up all night with tons of output. Chocolate is a real speeder upper for me. Feel gross today ate some saltines and had some water. Praying I feel better and can get back to sleep. Guess when we get into all this, at least for me, there are just certain things we have to avoid. Hope you feel better. Come what may or may not with me chocolate will never pass my lip again! Rosemary

Rosemary when I say open it was a right hemicolectomy and the cut was about the same as if your appendix were removed, so its a cut about 4 inches long and on the right side only there was no cut down the centre of my stomache. Not sure what you would call that but it sure wasn't a lapro cut. Obviosly they were still able to do lapro surgery for my ileostomy and proctocolectomy.
Doreen

Hi Rosemary & Doreen, It has been great hearing from both of you, seeing that we all face similar problems and maybe can give helpful suggestions to each other at times. I told you that I had about 8 straight days and nights of extreme pain, very watery output and I think I mentioned the hot/cold prickly sensation on the right side of my face and in my hands! I was so miserable for all of that time and I just wanted to die! I have absolutely no idea what caused this latest blockage but finally I am starting to feel pretty good again so I can now start eating again! I know there are certain foods that are absolutely supposed to be avoided; like popcorn and mushrooms. I have eaten Orville Redenbacher's popcorn several times since my original ileo (over 1 yr. ago) and it has never seemed to cause any problem . . . . unless the problem showed up 2 wks later which I highly doubt! I love mushrooms and have eaten them several times on pizza and they never seem to cause a problem. I do suspect them slightly though because, with this last episode of pain, I had just eaten pizza with a few small mushrooms as a topping. Actually I think I ate the pizza on a Monday night and maybe on Wed. morning, the pain started! I really don't know which foods, if any, start up my pain and partial blockage problems because nothing seems consistent! I think what really makes my whole situation so difficult is that I always suffer for days with "severe depression" after I get over the physical problems. I guess it is just so difficult to realize that at least 80% of the time I am either: in pain, so weak I need to stay in bed or at least in my pj's all day or else I am trying to recover "mentally" from all of this and get "undepressed!" Usually I get excited about the holidays; I just love Christmas in particular. This year I have absolutely no desire to do anything to prepare for the holidays! Of course (and this is a real "killjoy" subject to holiday cheer), I am trying to decide by Thursday if I want to request that my surgeon "remove my rectum" by the end of December. This sounds so awful but I get constant rectal pain and pressure plus I have the daily watery leakage from the butt crack (how embarassing) so I am thinking maybe I would be better off if my surgeon would just remove the rectum. If I want my insurance to cover the cost I need to get it done before the end of December. This is really my most pressing issue right now so if either of you could answer right away (I see my surgeon on thursday), I would really appreciate it! thanks again for all of your help!

Take Care!

Love,
Gilda

Gilda,

Ask if permanent nerve pain is a risk of rectum removal, I have heard it can be. You would not want that. Also get that B12 and MMA levels checked. With adhesions and blockages as you have I would avoid pizza (cheese very slowing esp that tough cheese they use on pizzas).

I would also avoid mushrooms and popcorn at all costs.

Just try for a few weeks this diet: yogurt with protein powder, juice, and decaf coffee for breakfast.

Scrambled egg and toast for lunch

Then baby food meat and crackers and tomato soup for dinner.

Then lots of water. As far as the rectal discharge, I just get mine suctioned out with a sig scope every few months and I own my whole colon. Good luck. Rosemary

Hi Rosemary, It really has been great hearing from you again. My stoma is pretty much flush with my skin and by using the convatec moldable wafers it makes it stick out enough that it works for me. I do have to almost always use the regular thickness Eakin Seals also (I tried the thin, they didn't work for me). My stoma is only about 1/2 - 3/4 inch across. I am finding that just in the last couple of weeks I can easily go from changing my applicance every 4 days to now about once every 6 days; i wonder why the change?

I am feeling pretty depressed again tonight but I think it is because I have so little energy all of the time! Yes Rosemary I will get my B-12 levels checked again; last time they were at the high end of the scale! Weird, huh! You know what I think really gets to me. Even though my parents are getting pretty old 82 and 90 yrs. old) and have multiple health problems; they still have a lot more energy than me and have a hard time understanding why I can't seem to get out of the house before noon each day! Part of it is that I live on Vicodin and Valium but that is the only way I have been able to survive life with an ileostomy. i sure don't want it to be this way! I always wake up in pain (low pelvis and low back) and I feel very uncomfortable at night until I "veg out", drink a couple of beers and take a vicodin. I know I sound like a drug addict but really I am in so much agony it is the only way I can eat and then get to sleep! I hope I can get up, get cleaned up and meet my mom in the morning. she is SO looking forward to me taking her to a Christmas Program and I really want and need to get out of my house! I am planning on doing this. Let's hope that i can!

gilda

Post Edited (Gilda) : 12/13/2011 12:20:31 AM (GMT-7)

Hi Gilda and Doreen,

Thank God for you guys. Thanks for the stoma measurements. Mine sticks out the 1/2 inch and is 7/8th inch side to side so sounds like when I clip off the 10 lbs I will be better. Good for you Gilda getting that much wear time. 10 lbs ago I could do 6 days. You are doing good if yours if flush. That would make me crazy but you have found a way. Doreen, maybe the paste is the way for me to go instead of the eakin seal Maybe I will try it.

In addition to all this, the Novartis drug co. stopped making my hormone replacement patch Estraderm. I tried the other two types of patches derived from yam as I am allergic to those derived from soy. One gave me a horrid rash and the other made me nauseaus. ONE pharmacy got the left over Estraderm from New York city so I emailed my new PCP that I need to get as many of those ahead as possible.. Then god knows what I will do. I am minus BOTH ovaries. ONe I had to lose due to a huge benign cyst but the other I could have kept, but my defendant surgeons who did what turned out to be the unneeded sigmoid removal, unneeded bladder lift, unneeded vaginal vault suspension, lopped off the top of my rectum for God knows why (then did not send sigmoid colon or rectal tissue to lab...yeah that's part of my suit) but why they took a left good ovary is beyond me. I was entering menopause at the time, but I have since read that even ovaries well beyond menopause help a little.

So without the right hormone patch I wake up at 3 a.m. and can't go back to sleep. I tried to wean off valium 5 mg nightly but compared to wakening at 3 a.m. and not getting back to sleep, maybe a valium for a restoring sleep isn't the worst thing in the world. One night just a Benadryl worked. The side effect of that is sleepiness. No matter what our issues I figure a restoring night of sleep is essential.

SOOOOO wish I was just dealing with menopause on it's own and not this whole gut thing. Especially since my having to get the ileo to save my life was caused needlessly by my defendant surgeons. SO much to my case, but I just try to focus on eating the right foods and taking care of me in the now as that in itself is quite a challenge. All the settlement money in the world will not restore me and my job is to just be the best I can as the ileo is my only life line. So I have finally put the history of that to the back of my mind or I'm getting there with counseling. Now I just figure if I ever reobstruct, it's in the hands of others and is beyond my control.

I also have the beginnings of Trigeminal Neuralgia (a nerve pain that comes into my upper right jaw just started this summer when I got back from Israel.) It is caused by compression of a branch of the trigeminal nerve that innervates the face by a blood vessel that I guess has always been rubbing on the nerve. BUT after 55 years, the coating of the nerve wears away and you get electric shock pains. SO FAR, mine have been low level and not too often. BUT I have sent brain MRI's to two neurosurgeons to see if I really have this condition. What they do for this is either stone you out on anticonvulsants to kill the pain (and zone you out) OR they do keyhole brain surgery and put a piece of surgical felt between the nerve branch and the blood vessel so they are no longer in contact. ONe doc is in San Diego and one in LA. I would never do anything like that unless totally needed. The doc in San Diego said he looked at my scans and saw the compression on the left but not on the right side of my face where the pain is. Go figure!

The other doc has yet to get my DVD of the brain MRI. THese were done for a dizzy issue which ruled out any tumors etc and not to detect TN as such. So I may have to have them redone with the TN protocol they call it "thin cut" imaging to get a good look at the Trigeminal Nerve roots. I am only 55 and should be in good shape out exercising at the gym, enjoying retirement. MOST of my friends older than I are in terrific shape. If not for the gut misdiagnosis and the unneeded surgery which lead to me needing the ileo to survive I would not have all that. BUT apparently this trigeminal neuralgia and of course natural menopause would have hit sometime anyway.

BUT, I know what you mean about not leaving the house til afternoon Gilda. I used to get out by noon, now I have not been getting out until 3 pm. My circadian rhythm is sooo messed up and I have to really judge what I eat. BUT, the ileo doc did the right thing doing what he could to save my life. And I am still thankful for it and all the travel I have so far been able to do. I sure hope I hold up to do my next two trips in Jan to Caribbean again and to Russia in April. Then I want to do a river cruise down the Mississippi. Glad I started my bucket list the year after I got my life saved at 51. I feel like I packed in a life time of travel into 4 years. Loved the world cruise, europe, greenland, antarctica, circle south america, africa coast, cape town, and learning to ballroom dance on all these ships. Hope I can keep on.

I feel for you Gilda with having pelvic pain. That would set me RIGHT OVER THE EDGE! I can deal with a lot if I'm not in pain. That is why I sure hope the Trigeminal Neuralgia stays AT BAY and doesn't develop. I heard of one lady who got it a bit at 50 and she was 80 by the time it went full blown. With luck if I do have this, then I hope my progression is very slow.

Oh, well, back to bed to try and sleep until noon. Hope I can get to sleep. I took off the patch causing the nausea, ate saltines, and drank milk, so am a bit better.

This is a neat connection. Glad you posted back Gilda. I was wondering how you were doing. Doesn't it get you a bit that our parents are doing better than we are, I mean really. Though we are glad for them, there is something not right with the scenario we are going through. Rosemary