HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 29

Support Forums
>
Ostomies
✚ New Topic locked
1 23 4 5 6 7 8 9 10 11 12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/9/2009 10:00 PM (GMT 0)
Hoddaya

you eat pretty much proteom (fish, egg) and too much protein slows digestion/bowel motility. Fish is ok I thin cause it is easy digestible protein but having two many eggs blocks me up.
Posted 12/9/2009 10:02 PM (GMT 0)
Lizzie,

I think it is important to have the barium orally (with the enteroclysis it is usally admistered through a tube that oes directly into the small bowel) so that the SMA syndrome could show up when it leaves the stomach and goes into the duodenum.
Posted 12/10/2009 12:26 AM (GMT 0)
jenise,

here's a well wish for you to see as soon as you are able. rosemary
Posted 12/10/2009 1:04 AM (GMT 0)
I have been so busy with things that I havn't been able to catch up on all of the posts. I am having alot of problems. If all of you can remember, for two years before my surgery I could not digest any carbohydrates-starches. After the surgery this really limited my food intake to about eight-ten items. They wanted me to try any carb that I was craving every week. I would get so sick that I decided not to do it but every month. So I was doing great up until this past Sat. However, at that point I had been only able to eat very little chicken, maybe three eggs a week, green beans and applesauce. That was getting me a little down because I saw my food supply slipping away. However, I felt great. Then, Sat. nite, We went out and I ate pizza (first carb in a month). I got extremely ill. Ever since then I have not been able to go to the bathroom at all - FOUR DAYS! I have only eaten applesauce and jello since then and drank many glasses of prune juice and miralax. But nothing. I am scared and I have only had one small serving of jello today. In the past two days I have not even had a total of 300 calories. I decided to stay home tonight from church and drink miralax every thirty minutes. We are going to call the surgeon tomorrow. Can someone please go over the symptoms of a blockage for me. I am having such terrible gas pains in my ribs because I can't pass anything. I have drank so much miralax and prune juice that when I move you can hear the liquid but it is not passing. Please someone help.

Lizzie, I am so sorry to hear again that things are not good for you. I am praying for you all the time.

Jen, I am worried about you. You have gotten too weak and are way too thin. Don't worry about the tree, there will be more of those, but they need you well to be with them for Christmas.

Hodaya, I didn't know that your food was becoming limited as well. What has happened? I know you and I are alot alike.

Rosemary, What are you limited to with the food?

Jenise, praying for your surgery, I hope it went well today.

Peltz, Janie, Judy, Marissa and everyone else - as always remembering you in my prayers.

Christy
Posted 12/10/2009 2:32 AM (GMT 0)
Christy,

Get to your local ER and get plain films upright and lying down.. They will see if there is uneven gas/fluid distribution in your small bowel. Then they will do a CT scan to check for a small and large bowel blockage. Laxatives are dangerous if you are having a small bowel obstruction.

I am actually limiting my food way too much. I had to have an ileostomy to save my life after disastrous unneeded surgery based on a misdiagnosis at a different hospital. I went through 13 months of hell trying to get help.. My colon, rectum, and small bowel all scarred in. What could be done for me was adhesion lysis off small intestine and permanent ileostomy. I just don't want to go to more hospitals so I avoid stomal food clogs by eating real bland. Anything than I can chew into nothing in my mouth is all I swallow. If adhesion reobstruction ever comes back even this will not help, but this will control never having a stomal food blockage.

If a carbohydrate caused your current issue get the 5 celiac tests and also get checked for wheat allergy. It may have been the cheese on the pizza that got you. Cheese is binding, but all that Miralax should cut right through that.

Good Luck, Rosemary
Posted 12/10/2009 1:18 PM (GMT 0)
Rosemary,
Thanks for the information. I have already had the celiac tests and nothing showed up. It could be a wheat allergy however. I shouldn't have eaten the cheese. I did finally go overnight three different times. It was pure liquid, like colored water. I think I feel better, just weak from not eating. I am going to stay on applesauce today. I am not having the severe gas pains in the chest cavity anymore, so I think that things may be moving. What are the things that you eat?
Christy
Posted 12/10/2009 2:54 PM (GMT 0)
Christy,

Avoid the applesauce; it thickens and slows output. Avoid the BRAT foods. Banana, Rice, Applesauce, and Toast. They slow and thicken.

I eat baby food chicken, lamb, beef; cream of rice, yogurt with protein powder, eggs, some white bread, pureed veggies, pureed fruit, ice cream, sherbert, lots of water, gator ade, cottage cheese, I can eat a cheese sandwich with no problems. But I have an ileostomy so am not dealing with my colon and rectum so my output tends to be loose and watery anyway. What arrangement do you have? Are you working with your entire digestive system? Rosemary
Posted 12/10/2009 7:45 PM (GMT 0)
Hi everyone, this Jim, Jenise's husband. The surgery went well although she has alot of pain and is using her morphine pump often. Thankfully there is not a temporary ostomy! She will fill in all the details later but wanted me to at least touch base.

Take care, Jim
Posted 12/10/2009 8:21 PM (GMT 0)
hello Jim! thanks so much for the update! i've been thinking about her all day and was wondering how she's doing. so glad there's no temp ostomy :) i hope the pain is managable and she has a smooth recovery! send her my best! Rosemary, i'm just having hard time keeping my diet and am tempted a lot to eat what i shouldn't, so then the faked sugar chocolate takes care of it. as long as i eat this chocolate, i can eat more foods. well not EVERYTHING, i can't exaggerate, but can eat a bit more. the thing with me is, if i eat my soft-liquid diet, things are moving, but i have divided bms which tied me to the b/r. and if i eat just a little of wheat, potato, pasta etc, then i'm terribly constipated and need a laxative. i'm sorry the Tribuanl has been postponded.. stay patient, it'll happen and justice WILL be done. it has to be. awww i'm so jelous of your snow, i love snow, but we never have it here :( thanks for your well wishes! :) pelz, i don't know.. i havn't eaten tuna or any kind of fish in 2 weeks and usually i eat 2 eggs every day. do you think 2 eggs is too much? Christy, hey girlfriend! it's good hearing from you. so sorry you've been having such a hard time.. though im glad things are starting to move. is it getting better by now? i really hope it is. i think beans are not good for us. i tried it couple of times and it didn't do me good, was kinda hard to expell it. i don't know why i can't eat most foods, my dygestive system cant tolarate almost anything :( well honey, i hope all that happened to you was just a one time incident and now things will be good for you again :) Lizzie, thinking of you and praying you get the answers and the drs there at CC can give you hope. hope everyone else are doing good.
Posted 12/10/2009 10:06 PM (GMT 0)
two eggs are definitely too much not only as far as the effect on the digestion is concerned but it is also unhealthy to have more than one egg per day. (cholesterol issues I think)
Posted 12/11/2009 12:10 AM (GMT 0)

Back from Cleveland....

Unfortunately I feel very disappointed. I saw dr. Zutshi and she did a rectal exam. she said my rectum is completely clamped down and spasming ( as I knew). She could not even feel it when I was trying to bear down. The frustration came more from her answers....she thinks I may be "afraid to poop....thats a bunch of BS!!! and that if I just say I can poop maybe It will help and to try some relaxtion techniques. I already do all of these exercises though PT. She thinks biofeedback is definately not working for me and so for now she put me on a F'IN inhaler (albuterol) that I was on half my life for asthma. She thinks maybe it will help with the spasms, but even botox never stopped my spasms with direct injection into the rectum. She think I def. may have something going on with my stomach and/or small bowel that has not showed on the tests I have had. I have to go back next week and see another doctor and have some testing. I know one is newly FDA approved. She said there is not a real good way to check for motility issues in the upper GI. She thinks my nausea and vomiting is unrelated to my rectal inertia. I am having a smart pill swallowed and monitored with some outside contraption for 48 hrs. They also mentioned a CT enteroscopy. I am seeing a Dr. Marrero and he is GI doc and hepatologist specializing in motility issues. So for now I will try the inhaler. My surgeon here is going to compare my CT from april (when had ileo emergently) and last Monday. My CT from April did not show an obstruction in April either, but a possible ileus.

I do not know what to think at this point. I go back next thursday......I will read everyones posts later....sorry, just tired and frustrated and nauseated.

So glad Jenise is doing well so far...thinking and praying for you all.

Lizzie

Posted 12/11/2009 3:27 AM (GMT 0)
Hi Jim,

Thanks for touching base. Glad Jenise is OK so far and no bag. Here's hoping she does great!

Lizzie,

You accomplished more than you think you did. You have docs comparing CT's and proposals of new tests to find out about the nausea. Try the inhaler, can't hurt to try. As long as your doc is moving things toward further investigation just take her slight "all in your mind" inuendo with a grain of salt regarding the relaxing to poo thing. We all know there's a lot more to it than that. Glad you made it home safe in the storm. Get some rest and you'll realize how much you accomplished tomorrow a.m. You did good! Rosemary
Posted 12/11/2009 4:45 AM (GMT 0)

Rosemary-

Thanks for your encouragement. I know I did accomplish some things, but its just so hard when you feel so crappy. Her nurse practitioner felt so bad for me....she said she can just see it in my eyes how ill I feel. After my last post I tried a little dinner...my food intake without vomiting/distension has been so little since last Sat. I had 4-5 bites of tuna, a little turley and some saltines and within 30 min I was crying in pain, distended so badly and more so on my right side that I called my surgeon immediately. He has put me on a liquid diet and said I can try and advance this weekend. If it keeps happening then I am not sure wht is going on. I took a huge dose of laxatives and was able to get a little liquid out and then vomited and feel better, but still nauseated even off Gatorade. I have so much pain, but i refuse to take my pain pills they gave me b/c of the motility side effects. My surgeon never said anything about my CT scans so I am assuming he may have decided maybe not to look at them. I will definately try the inhaler b/c it wont kill me....and I was able to laugh this evening with my MIL and sister about how maybe if I talk a little nicer to my non-functioning rectum it will start relaxing. I feel she got the wrong impression b/c the rectal exam with my extreme tightness was very painful and i think she may think i thought it was painful to try and go, but its not...I just cannot push and strain even with liquid at times.

I will see what this new doctor thinks. He is now the third doctor I have seen at CC and her nurse practitioner said I am extremely complicated with more than one issue going on. My question is if the N/V is not related to my rectal inertia then why did it go away when I had my ileostomy???? I was never nauseated until right before my reversal...ever?? Also, I spoke to Palms of Pasadena in Florida and discussed the BCIR surgery with the nurse today and she believes on the surface I would be a good candidate. Again, I am just at a loss in what to do...for now I will puff my inhaler and go back to CC next week and stick to liquids.

Love to you all...promise i will get to the posts. Thinking and praying for you all....ALWAYS.

Lizzie

Posted 12/11/2009 5:50 AM (GMT 0)
Gosh Lizzie,

I just get so frustrated when I read your posts. I feel like these doctors think we all have some sort of mental problem. What is this junk about being afraid to poop? Whoever even heard of that mess. As you can tell, I am mad about this. It is too familiar. I do have a great doctor now, but I have been put through the mill for years to get to the right one which is why my stomach is now so bad. I will keep praying for you. I hope you feel better and soon because I do understand the weakness you are experiencing, but it is way too horrible to have to throw up every time you eat.

Hodaya and Rosemary,

I called the surgeon today. She said that I did not have a blockage because I was not nauseated yet. She thought I was getting a partial obstruction and told me to stop the Miralax and take a Mag Cit. I just did that an hour a go and boom! Within 15 minutes I went and it was alot. I feel so much better! If I had not gone, I would have had to go to Birmingham tomorrow, which is a 5 hr drive one way. I am so glad that I can relax now. I have to call her office in the morning and let her know. It's amazing because for half of my life, I have drank up to four of those bottles at a time and not gone at all and one bottle and 15 minutes later a welcomed miracle happened!! Thanks so much for the info on the applesauce. I don't know what I will be able to eat anymore. Maybe I will try baby food like you Rosemary. But it sounds so disgusting. I can't eat the bread, cream of wheat or ice cream already, so that's out. I hate cottage cheese. I was basically down to green beans, applesauce and chicken or fish and a couple of eggs a week. I have had no solids for days, tomorrow I will try green beans again. Thanks for all of your concern.

Jenise,

I hope you are recovering well. I know you are in pain, but all of us understand and are with you in our hearts. Hang in there, everyday will get better.

Jen,

I hope you are getting better too! Maybe soon you will be home with your kids and hubby and you can put all of this behind you!

Love ya all,
Christy
Posted 12/11/2009 12:42 PM (GMT 0)
Lizzie, it's such a mistery why when you had the ileo the rectum could relaxe, what does dr Zutshi think of this? being affraid to poop is bull! totally a joke!! one colorectal surgeon told me as well that it's hard to diagnose motility probs in the upper digestive system and that the tests are not accurate. you know i'm always praying for you Lizzie and i'm really glad you have such good drs who are really trying to work together to help you. dr Nadav (forget how to wright his last name) sounds like a terrific guy working together with CC and i can tell he really cares. i hope you feel as good as you posibly can.. vomiting like this is not easy. Christy, i'm so glad things finally moved properly, WHAT a relief, huh? it's just too depressing to eat only the little list of foods we do, isn't it? it's not what we hoped for. the sugar free chocolate is helping, but i have to eat lots of it to get the effect and i can't go on eating such great amounts of chocolate like this. i think i should try to stop and see how it goes w/o it. i hope you keep doing better.
Posted 12/11/2009 3:18 PM (GMT 0)
Chrisy,

Way to go. That must have felt great! Good!

Lizzie, You said you never felt nauseaus until right BEFORE your reversal. I remember your posts on this. Could it be the nausea cause was starting to present itself before you had the reversal? and is now getting worse? Do stick to liquid diet definitley. If you still throw up then just go to clears. Then if you still throw up you can see them next week with some real hard evidence that SOMETHING IS WRONG AND IT'S NOT ALL IN MY MIND! THAT fries my butt when they say that! Anyway, good luck. What is a BCIR surgery?

If CC can't find the cause, google lahey.org and get the number for the colorectal dept. They work miracles. OH BY THE WAY, I'M ON THE INTERNET. TYPE IN THE URL lahey.org; there is a picture of a patient named Terri, to the lower right of her picture is a very small search box. Type in Rosemary Jablonski and click GO. Then Click on Colon.Rectal.Surgery.Impact.Report. Up will come a 2 page report on their Colon and Rectal Dept. Scroll all the way down to the bottom of page 2 and you will see pictures of me on my world cruise! :-) Rosemary
Posted 12/11/2009 5:30 PM (GMT 0)

Sheesh! I spent an hour the other night reading and playing catch-up. Then I spent another 1/2 posting and it never came through...GRRR! I am not sure what happened to my post.

 

Hodaya - Alcohol sugars are osmotic and non-habit forming.  I was on sorbitol liquid sugar for nearly a decade and I rarely had to increase the amount.  The sugars pull water into the gut and help your stools to liquefy. I still take one tablespoon at night to clean out my system.  Otherwise, I will have a morning bm and I cannot have morning bms when I need to teach at the gym.  I cannot excuse myself from teaching the class to go to the bathroom.

 

Jenise (Jim) -  I would like to come see Jenise in the hospital.  Please have her call me when she is ready to have visitors. I am glad she is doing well.  She and I have the same surgical group and I feel confident that she is in good hands.

 

Lizzy – as always, I am thinking of you. I was hoping from some good feedback from you when you returned from the CC. I am sorry it was not a great result and I am sorry you have to drive back on Thursday.  You might want to sincerely consider getting a bag again.  I know your work will not willfully approve the time off, but that is just a job.  Plus, I am not sure they can hold you accountable and let you go because of your health reasons.  You have to talk to an attorney to get more information regarding wrongful termination.  I asked my hubby last night who does medical malpractice insurance defense, and he was not sure of the laws in your state.

 

Christy – I think a lot of our problems are mental.  Most women hold stress in their gut which normally results in IBS-D or IBS-C. I have the IBS-C (Irritable Bowel Syndrome – Constipation). This is also genetic.  This is why relaxation theory is important for people in our situation.  We need to learn to channel our stress from our gut and into healthy breathing and relaxing – easier said than done. serotonin controls the release of hormones- epecially those affected by stress. Further, approximately 90% serotonin is found in the gut where it is used to regulate intestinal movements. I take a serotonin inhibitor to help balance the hormone regulation in my GI system.

 

Jen – I hope you are doing well.  I know being in the hospital is hard.  Don’t use your bed sheets to escape out of the window.  You need to be there.  You need to get the nutrition the hospital can offer. I know you miss your kids and hubby.  I am so sorry that you are having so many health struggles. Your children and your hubby will be alright.  They need a healthy mommy.  Give yourself permission to heal, recover, and relax in bed at the hospital.  Allow yourself this time.  You had two surgeries in a short period time.  Your insides are trying to heal.  They want to heal. You will get back to yourself in time. I know it’s hard; I have been there.  I have been in the hospital during the holidays.  I spent 4 out of my last 5 birthdays in the hospital and each time I was NPO (no food or water). Hang in there! We are all here to support you.

 

Rosemary – I love your comments.  You are the rock that holds this forum together.

 

To everyone else – I hope you are well.

 

As for me, I am hanging in there.  Some good days, some very bad butt burning days… But as a mom, I have to push along through life and try to stay upbeat.  I have too much to be grateful for to let my health complications get me down.

 

Take care…

Amey

Posted 12/11/2009 8:27 PM (GMT 0)
hi everyone,

spelling might be terible..i'm still a bit doped up. Surgery went fine, he had no issue with the mesh. My bowels are still not waking up.. so I'm on total clear liquids. When I drink - it makes me nauseous. I'm bleching a lot =- and doctor said becaue my stomach is not empting. I have not passed any gas yet.

My uro gyn fixed my rectocel and did a periplasty. so it feels like I gave birth down there. My rear end is sore too.

I did have a spike in my blood sugar, and they had to give me insulin, and I get a shot in my stomach - which is a blood thinner.

I'm tired, but I feel better today then yesterday or the day before. I'll post more again soon.

I actually posted this post this morning - on the wrong forum! Guess that's what the drugs do to you.

I'm much more alert this afternoon - but still not passing any gas.

Amey, that's so nice of you to want to visit. My family is all over an hour away and I'll be here alone tomorrow.. I of course look like awful.. my hair is greasy and such! Don't feel pressure to come, but if you - I'm in rm 6475-K
Posted 12/11/2009 11:09 PM (GMT 0)
Jenise - hang in there.  It took 3 days of walking to get my bowels to move a bit. Then my bms were bloody...which is normal. There's blood in your intestines from the surgery so don't freak out.  I am glad things went well.  I've been thinking about you a lot.

Thank you for posting and keeping us updated. 

Posted 12/12/2009 1:35 AM (GMT 0)
YEAH Jenise, good for you. Took my guts 3 weeks to wake up, so don't pressure yourself. Glad to hear from you! Wish you well.

Hey Amey, Thanks for the compliment, that was nice.

Hey Everyone,

To see pics of my world cruise (and me) go to lahey.org, then in the small search box to the right of the person's picture, type in Rosemary Jablonski and click GO.

Then click on Colon.Rectal.Surgery.Impact.Report which is highlighted in blue.

Then scroll all the way down to the bottom of the report and there I am. (Thanks to Lahey) :-) Rosemary

Post Edited (esoR) : 12/11/2009 6:38:21 PM (GMT-7)

Posted 12/12/2009 1:51 AM (GMT 0)
Jenise it is good to hear from you.  It took my bowels about 4 days to wake up so just give it some time.  I pray for you to have a speedy and sucessful recovery. 

 

Lizzie I can't believe they told you were afraid to poop.  That is the biggest bunch of malarchy I have ever heard.  I hope they get some answers for you.  Have you ever been tested for gastroparesis?  I have had several tests since being in the hospital this time, and the latest was the upper gi series(small bowel folllow through) and an endoscopy. It showed that my gastroparesis is worse since surgery and that is why I was getting so nauseas and vomitting.  They have put me on Regulan through the iv and it has helped tremendously and when I get home I will go on the pill form.  I am praying for you and very worried about you.

 

To everyone else I am thinking about you and you are all in my prayers. 

 

I am of course still in the hospital.  The doctor came by this morning and wants to keep me here to at least Monday to see how I am responding to eating and the regulan.  Right now I feel fine until I eat.  The nausea is not a problem much at all but I am still getting bad cramps about a 30 minutes to an hour after I eat.  So much so I need pain meds.  I have not had a bowel movement in 24 horus so that is irritating considering how much I was going just a few days ago.  All tests indicate small bowel and connection site are fine so I guess it is just going to take some time to heal. 

 

I am so ready to get out of here.  I miss my kids and husband.  Also my poor husband is running himself to death. Hopefully I will spring this place on Monday.

 

Thinking and praying for you all.
Jen

Posted 12/12/2009 2:47 AM (GMT 0)
Jen,

Great news about the connection site! That is sooooo important.

You are also lucky you can tolerate Reglan. That drug made me severely hyperactive and made my entire body shake. Then of course my original medical team and nurses in 2006 said I was crazy, duh! It was the drug! They didn't get it! I think Tracy had some similar reaction to it. It's a good drug if you can tolerate it and I'm happy you can take it. Sounds like they are going to make things good for you. Hang in there. Rosemary
Posted 12/12/2009 5:28 AM (GMT 0)
Jen - Your right, the cramps after eat are bad. Your poor stomach and intestines are trying to heal and yet we are forcing them to work when we eat. I had forgotten how bad they were until I read your post. I remember being 4 weeks post-op and my sister took my to lunch. I ordered a small appitizer for a meal. I can recall the tears filling up in my eyes about 15 minutes after I ate. I went and laid in my car and put the seat back. I laid in the fetal position for about 30 minutes until the cramps pasted. Now that I am 9 weeks post the cramps are gone. You had double surgery so your body is going to take longer to heal. I am glad you can tolerate Regulan. That medication goes through the brain in order to work. For me, it has serious neurological affects that make me feel strange. It works great but the side effects made it where I could not even stand up and get a hold of my surroundings. I am happy that you can eat. The cramping will pass. It's normal. My hubby forced me to take some pain medications once in a while at night because the pain was awful. I am very proud of you. I cannot begin to imagine how hard this is for you and your family. But this last message sounded a little more upbeat than your last few messages. I hope that means your gaining courage. I will con't to pray for you - that you can wake up and be with your family on Christmas morning.

Thinking of you....

Amey
Posted 12/12/2009 5:38 AM (GMT 0)
Well hello all you chatty ladies! Things have been crazy here so I had to catch up on you all. Jen, hope you can be releases asap!! Do you want us to all come and dress up as nurses and make a break for it!! They will never know. We will just tell them we are taking you for a scan and bye bye we go. Hey its worth a try aint it? LOL

Its been so chilly here. -20/OMG!!! Just bitterly cold.

Jenise, it sounds like things have gone well for you. Just keep the walking up and the food intake very slow. That was my best resolution. I stuck to pudding for a long time. And soups also. the walking definetly helps get your strenth back.

I will be going back to the or on Wed the 16th. Trying to figure out why I still have rectal bleeding. Hopefully I will only be in for one or two days and thats it. Guess we will see how that goes.

Lizzie-my prayers are with you and we will pray for you at church also. Somethings gotta give already! You cant do this for much longer!

Hodaya, hope your doing fantastico!!

Feeling very sleepy from meds. We all know about that aey!!

Love you all tata for now!!
Posted 12/12/2009 2:36 PM (GMT 0)
Marisa sounds like a plan. I am ready to break out of this place. They have put me on a low fat, low sugar, low residue diet. What the heck??? I can understand the low residue but low fat and low sugar.....how am I supposed to gain weight on that.....NOT..I am very irritated! Afraid I am getting ready to be a very cranky patient!

Jen
✚ New Topic locked
123456789101112