Total Colectomy 2011.1

Good idea starting this new thread. Tracy and I were talking on the phone and we both said, "Where did everyone go?" Rosemary

Allie, thanks for the update on Lizzie.

My temporary loop ileostomy is 1/2 to 1 inch long and 7/8 inch around. It sticks out wonderfully, like a water spout. I love it and hate to have another surgery in May to have this one closed and an end ileo made...BUT,

I will have a total colectomy, have the temporary loop ileo closed, hernia repaired, an end ileo, possibly on the left side because of the parastomal hernia on the right, and a tummy tuck so I can have the end ileo in a better spot. I can't wear my normal clothes because my stoma is a little high because of my belly fat and excess skin from having babies. YUCK
I will keep my non-diseased rectum!

If you want to see pics of my stoma, just email me and I will send them to you. We have taken lots of pics to keep track of how big the parastomal hernia is getting. It is now the size of a small orange. But my doctor said it is SMALL...I was like, woe, I don't want it to get bigger than it is right now. EWWWW It looks very big to me and ugly and I feel self conscious about it....

Hodaya, where are you? How is your stoma doing? What about your output? I have found that if my output is too thick, that several ounces of pickle juice will thin it right down. YUMMY! Luckily, I love pickle juice.

Where is everybody?

Allie and Peltz,

I felt just the same as you guys do those 13 months my small intestine and large intestine and rectum were basically scarred shut and I could not eat or defecate AND all these docs I were seeing "didn't get it." On no food, I don't really know how I survived. The turning point was a CT Entercolysis image test at Mayo clinic where it proved my small intestine was scarred mostly shut, but even they did not take action. If not for the doc at Lahey who did what he needed to do, I would not have lived. Scares me that 10 other docs were going to let me die rather than take action. But, when this worked, then suddenly I connected again with the outer world. I think that desolation of being so damaged and nobody "getting it" definitely had its impact on me that will last a lifetime; I am not the same person I was before going through all that. So I applaud both of you for dealing with things for so long. Allie, your ordeal is almost over as I feel that ileo will work for you. Peltz, I really feel for you, and I pray you can find the help you need to lead as good a life as you can. You are both so young, as is Lizzie, it breaks my heart. I'm about twice your ages.

I'd be glad to show you Russia pics assuming I stay OK and get to go in August. Thanks for well wishes. I will make the journey for us, and who knows, you may both end up getting there some day not so far away.

Allie, my end ileo stoma is a bit oval and is 7/8 inch around and sticks out about a half inch. There was a note in the op report that I have narrow intestines compared to the general population of people my height and weight so the stoma had to be done so that not too big of a piece was cut out of my abdomen to bring the stoma through, yet a big enough piece so I would not get a stricture in back of the stoma. Add that issue to the fact that the end of my small intestine was scarred densely to my rectum, and my ileo surgeon had his work cut out for him. I really lucked out as only 2 months after my surgery he had to stop doing long intense surgeries because of his back. He was 72 and still bright as a button, but his own body was starting to act up.

The only issue I have had so far is that above the stoma I feel a real muscle heaviness that increases through the day. I don't have a peristomal hernia and so far all is working fine, but its not a normal feeling. Tracy has it too (in addition to her peristomal hernia) so maybe it is normal to feell heaviness even without a hernia??? after all abdomens weren't meant to have intestine hanging out of them.

Oh, Allie, also ask your surgeon if he puts the stoma right through the rectus abdominus muscle. If this is done, it minimizes your chance of stomal prolapse or peristomal hernia. I have so far had no retraction and it's going on 3 and a half years for me. I have gained weight so the stoma is not a prominent as it used to be but I have no issue with the appliance. I am however going to try and lose some weight because if you gain too much, it can affect the stoma's function. BUT I was down to 99 as I could not eat a year before getting my stoma. My normal weight was 125 and now I'm at 132. Gotta knock off about 7 pounds if I can. My metabolism slowed that year I could not eat so I would stay alive, then when I started eating, the weight came on fast because I was eating with a slowed metabolism. My metabolism may never be what it was so I have to watch it.

Rosemary

Jen,

Sooooo sorry to hear of all of this. Why did they do a hysterectomy? Was it done open or lap?

Are they sure that this is slow small intestine and not actual blockages due to adhesions?

Try to get a CT Enterography if you can. This is a new type of CT scan which can detect narrowings in the small intestine. Best to drink plain water contrast for this so that the small bowel really expands. If there are narrowings, this translates into adhesions on the outside of the small intestine which are squeezing it in. When I read awhile back of your then upcoming hysterectomy I wondered why you were having it and also thought of adhesions as a result. Not pretending to be the expert here, but due to my vast experience with sbo's from adhesions, I've learned a few things (I never wanted to know).

Good luck and ask your doc about the CT Enterography.

Rosemary

Hi Jen,

WOW! What a terrible time you have had and bad current situation. Likely all the bleeding from the adhesions being cut during surgery added to the formation of new adhesions. Did they use any adhesion barrier? Some docs don't believe in it but so far Seprafilm worked for me. Your GYN is right, you should not have any more abdominal surgery because surgery just creates more adhesions. Yet on the other hand, if you have repeated small bowel obstructions FROM adhesions, the question becomes, is this safe to live this way? Is it ileus or small bowel obsructions from adhesions? A real double edge sword.

The CT Enterography, if it showed narrowings in the small bowel, this would mean adhesions on the outside of the small bowel which narrow it in. Then at times your small intestine kinks off thus necessitating the nothing by mouth, IV's and possible NG tubes to decompress the small bowel and it unkinks itself.

In your case, I would say that it might be worthwhile to at least know if you have these narrowings just for info.

From what I went through, I was told it is not a good idea to take a laxative if you have these narrowings as this can distend the bowel and actually precipitate an episode of small bowel obstruction. Yet if it is ileus, it says right on the Miralax container, don't take if you have ileus or small bowel obstruction. Yet if you have slow small bowel motility and can't go without the Miralax, I can see why they have you take it. Your situation is very tricky. These are just some ideas to ask your docs about. I sure hope they are knowledgeable and caring.

I tried to find an expert in adhesion removal for Lizzie by emailing some National Foundations which deal with intestinal adhesions. I got about 4 email addresses. I just asked who specialized in adhesion take downs. All I got back were messages like "We are just clearing house for information about adhesions, we don't give medical advice, ask your doctor." BIG HELP THAT WAS! Auuugh!

Anyway, I sure feel for you and wish I could help beyond giving you more questions to ask your doc. What are you able to eat? Bland foods in small amounts? Maybe for now just find out what works.

During my time when my small intestine was closed in with severe adhesions and my colon and rectum were scarred almost shut, I would have to take about a half gallon of Colyte Bowel prep every week and literally melt stool down to get it through my rectal and lower colon narrowings. I would then have an episode of ileus 2 days after having done the Colyte treatment. I do not know if this was caused by having done the COlyte then starting to eat the next day or what, but it always happened that way. Then I noticed on the side of the bottle it said, "Do not take if you have small bowel obstruction or ileus." But what else was I to do, I couldn't let my colon rupture. I was in a no-win situation. THat is why I hurried as much as I could to find help and got the adhesion lysis and the ileostomy. So keep a food log and a diary of when these ileus or sbo attacks occur in relation to when you have taken the Miralax.

Keep me posted. I wish you all the best at some sort of solution here. This sounds rough. Rosemary

Wow, maybe an ileostomy is the answer. Maybe there is inertia in the rectum??? Just a thought that I had.

Marisa I have been out of work since my hysterectomy surgery on 11/8/10. I was hospitalized once for a partial obstruction, then once for an ileus, and then I got a stomach virus which dehydrated me and kicked up my gastroparesis so they put me in the hospital again. I was released on Christmas Eve and developed pneumonia that evening....lol...it never ends with me. I am cleared to go back on February 1st. I work from home two days a week and three days a week I make visits to inspect child care centers. My supervisor is very understanding and lets me stay at home and not make visits when I am not feeling well. I know what you mean about feeling like a burden. I am sick all the time. My husband is very understanding but I know he gets tired of me being sick. Everyday I am in some sort of pain, and I get nauseus a lot. I live on zofran. I have reglan for my gastroparesis, but I hate the way its makes me feel. Keep my posted on what they find out with your small intestine. I have had several tests and all it ever shows it marked slow transit in the small intestine and gastroparesis. I am going to take Rosemary's advice and see about the CT Ent. test.

Rosemary it is a difficult thing with the Miralax. I take it then within an hour or so I have just liquid stool then I may not use the bathroom for another 12 hours which without a colon is a long time. When things are moving great, and I feel good I go to the bathroom at least 4-6 times a day. I just can't figure out what to do and what triggers this. I hope my GI has some answers. As far as eating I try to eat a variety of things but usually stick to bland foods. Mainly a low residue diet.

I'm just tired and wish for normalcy one day.
Jen

Just stopped by since it's been so long since I've been here. Thanks to those of you who are keeping this thread alive because it's so nice to come to, if only once in awhile, and see friendly "faces" lol

Jen and Marisa, I'm so sorry to hear you are both having so many issues still. Jen, I live on Miralax too. If I don't take it twice a day I feel terrible. I'm so fortunate that I actually feel well most of the time and even though I have to run to the bathroom many times a day it's so much better than feeling horrible all the time. I understand about running to the bathroom after taking it....do you take it the same time every day? Have you tried taking it regularly twice a day? I actually mix a little metamucil with it to give it a better flavor and to make my stools not completely liquidy, although they are pretty loose. Marisa, I thought you were doing better. I'm so sorry to hear that you're still having so many issues.

Miss you all:)

Janie

hi my loves! nice to see everyone gathered again.

my appt with the CC surgeon was disappointing. first of all, he was so not nice as he used to be. i told him that i'm 6 mons with my stoma now and have made up my mind i want to keep it for life. i told him that all the ppl i know who have loop ileos and a j pouch have bms, some once a week, some every day, some several times a day - but anyway, the point is that when they have the urge, they can expel it. i explained to him that the problem with me is that i can't and nothing can be expeled on it's own even if i wait 6 mons. the pressure is horrible and causes me lots of pain in my whole pelvic and lower abd, and the pain wakes me up at night. so i asked him what about taking out the rectum and doing an end ileo.

so he said that removing the rectum is a huge surgery, as huge as a colectomy, but even worse, cause it involves lots of complications, such as possible nerve damage, since there are so many delicate nerves in our pelvic, and as a result - horrible chronic pain. also, my Fallopian tubes can be shut from scare tissue and thus will have hard time conceiving a child. he said you can do it, but i suggest you consider it very heavily. so i don't know... honestly, the thought of a nerve damage really worries me. i know 2 women who were unfortunate and have it as a result of a pelvic op and their lives are ruined. they live on the strongest nacotics exist and it's for life. that REALLY scares me.

but i hate it that i still have to do enemas, and i hate it even more that the enemas are not working!!!

i asked what about doing an end ileo and keeping the rectum. he said it's not a problem doing that and it's a small procedure, but it wouldn't solve the rectal pressure problem. so anyway he doesn't recommend it, at least not at this point, esp since i still manage with convexity and adapt rings and there are no skin issues.

one thing he said that surprised me was that he can't find the lower hole of my loop stoma. he thinks it has closed shut, so now my stoma functions as an end ileo... i was shoked and besides... only a week prior to seeing him i changed my wafer and i saw the mucos coming out from that nonactive hole, so is it possible for it to be shut within a week..???? so weird.

about my mysterious recto-vaginal fistula, it first of all sounds very strange to him for it to be created after an ileo op. he said it's more likely to happen after an op in the pelvic and not such a procedure as just creating a stoma, so it makes no sense to him. but in any case, my fistula isn't very symptomatic, i mean it's not causing me much trouble, probably b/c i have a stoma. i do have a huge amount of mucos coming out of my vagina 2-3 times a week, but it's not that horrible. i just change my undies liner and i'm ok. so maybe better leave it as it is. i said i'm possitive i do have one, also b/c of the fact that when i get my period, blood comes out of my rectum. blood never comes out of my rectum, only during the first 2 days of my period, when i have the most massive bleeding. he said that even if there's a fistula, it's better leaving it as it is, since it's not causing much trouble and it's not dangerous leaving it as it is.

the MOST hard part of that appt was when he stuck his finger into my stoma...... OMG!!!!!!! i thought i was going to faint!!!!! it was HORRIBLE and caused my stoma to sink even more... i don't like them doing that, and if i ever go to see a dr again, i'm gonna try to avoid that part as best i can!!!!! i'll ask if it's really necessary, cuz if not, i'd rather them not doing it :((((

about my slow motility, there's no surgical solution he can offer me - that's all he said.

i asked what are the chances i have narrowings/scare tissue. he said that if i had narrowings, prune/pear juice wouldn't have helped and i would get obstructions often. so the chances i do are very low.

soooo... i don't know, have no idea what to do about things.. i'm just not gonna do anything at this point i guess.

so Allie, i know how badly you want to rid of this nonfunctional rectum, i want it bad too, but it's just so scary to think about nerve damage... so frustrating.

Rosemary, i don't feel any heaviness neer the stoma or anywhere in my abd. i don't think this heaviness feeling is normal.

Jen and Marisa, so sorry about your ongoing issues. i also have a slow small intestine, but i manage ok with prune and pear juice. i hope your drs have some answers for you both.

Tracy, i used to drink pickles juice every evening to help with my output. i LOVE pickles juice too, but it caused me severe water retention, so i had to quit and had to switch to prune juice instead. the pickles juice in the right amount (half a glass) was working much better than prune juice, but i was so swollen and starting developing edema YUCK! so please be careful with that, all that salt is not good for you.

i'm glad you're doing well, Tracy, but you do actually have a huge surgery a head of you - removing the colon + repairing the hernia. but it is best to remove the colon, no use to keep it in. i just hope all goes well.

Janie, glad you're still doing ok :))

Sarah, thanks again so much! i checked it out and we do have this company's products here, so im gonna try it. i hope it helps me too with the motility.

i feel so sad for Lizzy for all the ongoing complications she has. she's always in my prayers!

Rosemary,

i asked about the suctioning and they don't do it. i also asked my surgoen at the time and he did a face like "what the heck are you talking about.." no one is cooporative about this, they say there is no such thing. so i just have to go through this alone with enemas that don't work.

i have an appt to a new gastro doc, but its on March 17th :((( so far away.. but maybe he knows of someone that can help me with it.

the surgoen i saw does think that all i have in my rectum is just mucous and not poop. you're right about the unused rectum becomes friable and that causes the tissue to bleed easily. anyway, whether it's also poop or just mucous, i want it out as should... :( i can't do enemas once a week and be bound to the b/r all that day... i can't spend my time in the b/r too much, that's why i had all my surgeries, so i can finally get out of there.

anyway, i can't find someone to help me with suctioning.

Hodaya, Just an afterthought. Being as I had such a bad experience as a US citizen and then having travelled the world since. I just think it is the US medical system that is messed up. BUT by your bio, it sure looks as if you were not tested thoroughly enough before they even did your first procedure. It sounds like if you had had a TOTAL work-up, they would have found that you had pelvic floor/rectal issues IN ADDITION to the slow colon motility and would have gone direct to an ileostomy (or at least suggested it to you and explained why.)

Sounds like other parts of the world are as confused about this whole pooping issue as are some docs in the States. This is just an observation. I know what you mean about just wanting pooping (Of mucous or anything) to be a non-issue in your life. Hang in, I think you are close. If the convex appliances are doing the trick, then things aren't perfect, but you are functioning. Also, I do remember you saying you were hospitalized once I think for "obstruction" since your ileo. If it was close to surgery it may just have been post-op ileus. So your surgeon may be right in that you aren't obstructing if the prune juice and all you drink helps.

I take it he did not offer to put your mind at ease by doing the CT Enterography scan????? This did bring me some piece of mind. So much depends on the insurance we have and the arrangements docs have with the insurance company. He may have wanted to buy you peace of mind but his hands may have been tied. I have learned so much of medicine (I guess world wide) is beyond the scope of the patient. Disheartening to say the least and am not minimizing your situation, but there are other factors we as patients are not aware of.

So hang in. Rosemary

P.S. My rectum is scarred at a right angle and I have the scarred non-muscular length of colon above my rectum all result of the unneeded 2006 surgery. BUT who can figure this one, I made several puddles of mucous this morning by sqatting in my bathtub, leaning to the left and pulling my left check of my butt to the left. I just relaxed and out came so much mucous I really don't need an enema and can head on out. Am still going for a March suctioning, but who in the world can figure. I think because my colon and rectum were healthy, they are still trying to work. Pity, but works for me. The body is soooo complex.

Hi Hodaya,

Oh, I see. Very interesting. I understand now. Your issues so different than mine. You gave a good explanation. That is interesting that the small bowel motility test is not reliable. So many of these tests are well intended but the results/interpretations can vary so much. One doc told me that the gut system is harder to understand than the brain. He called the guts our "second brain." He says guts have more nerve endings than the human brain.

Fascinating that your perineal US was not normal yet your defecogram was. So yeah, I can see why they tried to make your rectum work. Well intended they were. I understand the pseudo obstruction now that you explain it. Slow motility rather than adhesions, narrowings.

Yeah, I would say as long as those juices are helping, keep using what works.

You will find someone to do the rectal mucous suctioning as that is the least complex issue you have going. Somebody should find this easy to do.

All I can say is we all ought to go on a talk show if they ever have a documentary about the human gut system. Between all of us and our varying issues, we could educate a lot of patients and docs too. After all we are the experts (in our respective issues.)

Thanks for clarifying this for me. Hope you find suction soon. Suction is VERY RELIEVING>>>>YEAH!

Yeah, I do love it when mucous just comes out of my butt on its own. Yeah, maybe it was the "power of suggestion."

Rosemary