Colon inertia part 2

Hi everyone,

I hope everyone is doing okay!  I have still been trying to plug along.  I have felt like doing a few more things.  However, I still relax a lot by either reading or drawing.  As for when you feel like normal Ali, well, I still do not think I am quite there.  I can't believe it has been 2 months since I was cut open again tormorrow.  Of course, I am still having some issues.  I am still trying to figure out a routinue for me.  Some days are better than others, and I sure hope the biofeedback helps!  I have been alternating between the MOM and miralax.  I have noticed the MOM (even at 1 tablespoon) has been giving me a def. jolt sometimes (funny to when I used to take an insane amount of laxatives and got no results)!  I just hope the biofeedback teaches me to relax those anal muscles a little bit more and pass my gas more efficiently because I still feel like I have some IBS symptoms at times!  Another thing I have been doing is eating my snacks and meals at the table to concentrate on chewing and digesting my food when I am hungry.  I am so used to eating at our little couch table and rush eating.  Not good, especially now!  Hoodya, like you said, chew, chew, chew; intestines are hyper-active with no colon!  My roomie is like what are you doing eating at the table!  Still aiming for by the end of the year to feel at least somewhat normal again! 

I have felt a little bit better emotionally lately, so that is good.  Plus, I am ready to start at least working part-time a little bit.  I should hopefully find out something about my job interview at the hospital in the next couple days.  Yesterday, I got a call from McDonald's.  It is just for a few days a week cleaning the lobby, keeping it clean at lunch.  I figured that wouldn't be too bad because I sure do not want to be in the high-paced food area.  The interview is on Friday for MickeyD's.  However, I sure hope the hospital job comes; it is a service access rep job, and it does pay pretty well!

I do not have too much else to say, just keep wishing that things will get better each week.  I did not have too good of week last week, so we will see what this week will bring.  Hope to hear from you all soon!

~Kyle~ =)

Thanks for the update Kyle! Hope your job search goes well!

That is a great idea to eat at the table, it's one of my goals if all goes well and I am able to have surgery. I ended up taking the cancellation they had so my appointment is next Thursday the 18th on my birthday. I think that is also when you start trying out biofeedback Kyle? I'll cross my fingers for you and you can do the same for me that day!

I have some relatives I used to nanny for, they called me late last night and asked if I could watch their kids for the rest of the week AND next week. I love them, but they always call me at the last minute like this, and their kids are a handful, and they live almost an hour away.

So I said I could do two days this week and that's it. Next week is my appointment and my birthday and I just don't want to have to deal with anything else that week. I felt bad, but I have a hard enough time right now getting through the days...so I'm nervous about babysitting even for two days (they don't have a clue I have all these stomach issues).

Hodaya - so glad you're trying new foods and they are going well, that is exciting!

Good morning,

Hodaya-yeah, I have been taking 1 gas-x or so after a meal.  The gas-x helps at times, but I still try real hard to watch what I eat or drink.  Also, when I start to feel bad, heating pad here I come!  Yesterday afternoon, I got frustrated.  My abdomen was just starting to distend, and I was full of gas!  By the end of the night, I was finally passing all that horrible trapped gas as I was going to bed.  Last night, I took my 1 tablespoon of mom, and got some good bowel movements.  I wish miralax worked better; it wants to work and creates more gas and pressure down at the bottom, but then I still have a hard time going.  I still think it is amazing that the mom really gives my belly a jolt sometimes; however, in the morning, I still feel some of the after effects, or my tummy is still rumbling a lot with trapped gas after the mom wears off!

I really want to get my belling feeling better by the end of the year.  I really think it is due to my inablity to pass gas efficiently.  I am ready to start biofeedback to see if it will let me pass gas and stool more efficiently; next week-August 18th.  I am still getting tired of having IBS symptoms; I guess it is not as bad as it was before, but still.  I know it takes a long time for some people to recover from surgery (me-3 surgeries this year).  Also, I know I am still afraid to eat the way I want to because of how I will feel.  I have tried a few more things in my diet, and eating at the table for about every meal and snack does help.  Let's me concentrate on digestion, chewing, food, and passing gas!  Hodaya-that is great that you are finally being able to eat some things again. 

Last time I spoke with the surgeon, he said he is still confident that I will be feeling better, especially since my rectum works fine.  Of course, it has been awhile since I have seen him again.  I think it is taking so long for my next appt. because the biofeedback is with the PA.  5 colo-rectal surgeons, but only 1 PA in the department.  Also, I am still questioning my stomach.  I remember you asked before Hodaya, but no, I never did have the gastric empyting test. 

The PA did seem nice when I had my anal manometry test.  I am glad she went through some of my results that day with her.  It was very informative.  It is good to know that I am not making up my weak anal muscles.  They do need to be strengthened!! 

But as of today, I still feel like I have yet to see a true, true benefit from this surgery!  One other thing I know I need to work on is my anxiety.  I have always been like that.  I get very, very anxious, and I know I enjoy food more, and prob. feel like I can poop better when I am totally and completely relaxed!!!  I am so determined to make some improvement in my quality of life this year. 

Whew, long post today, on a final note, I did not get the job at the hospital! =(  It makes me mad because it seems they always go with an internal candidate, but the director told me I did interview well.  Tomorrow is my job interview for cleaning the lobby at McDonald's a few days a week during lunch.  Like I said, I do not think that will be that bad, just cleaning.  I will not be in the busy food, crazy area!  I know what that is like, my first job was McDonald's!!!  My weak body is not up for the craziness in the food area. 

Alibee-Hope your appt. goes well, and I am glad that you got it moved up!  Yes, the same day I start my biofeedback.  I really think my anal muscles are weak because of the years of constipation, not eating right, and then the constant use of laxatives propelling it forward! 

Smarty-I hope everything works out for you.  Like I said, I think I still have yet to see the true, true benefit from the surgery, so I am hoping biofeedback will help.  Even if I have to take a stool softner for the rest of my life, it will be better than what I was doing pre-surgery.  Still rooting for the biofeedback to help with the gas and bloating part, then maybe again after a couple months; my anal muscles will be stronger, can poop and eat even a little bit better again! 

Mary & Nanci-I haven't heard from you two in awhile.  I hope all is well, and things are still continuing to improve.  Nanci, are you still going to biofeedback? 

Post Edited (hurtboy) : 8/11/2011 10:14:58 AM (GMT-6)

Yeah, Hodaya, I am not sure what is going to happen.  I do promise if the cleaning job is too much; I will quit.  I don't even know if I got it yet!  I do not want to over-exert myself, plus, who knows what will happen with the doctor?  I typed up a letter for him to review before I meet with him on Thursday.  I still have so many bad days compared to good days.  I told the doctor that it still feels like I have a lot of IBS or colon inertia symptoms even though I do not have a colon.  I get tired of worrying about how I am going to feel today!  I have been getting very frustrated lately.  I still haven't even felt like wearing jeans ever since June yet!  Also, I explained that not everything can be explained, and sometimes tests cannot mimic the real thing; how I wish he was here by my side to see how I feel because honestly, do you know?  I know it is awful to say, but I still question the bag sometimes, just so things can flow easily.  Gas just gets stuck in my abdomen or out the bottom not wanting to come out.  I still use the heating pad a lot to calm my poor little tummy.  Even when watching my diet, I still feel like I can't enjoy a lot of foods and eat the way I want.  I have never been a big eater, but to enjoy more variety in my life again and not suffer would be a dream come true!!!  I don't think anyone gets that I can get so sick and nausea when I am built up with gas and stool.  I have read some of Tracy's post and couple other people, and it seems they understand.  Or recently, Ironmum, just had the ileostomy because she just felt so sick without it.  The only thing that I can explain wrong right now is my anus, but maybe it is nerves down that are messed up, and my clinic does not have those tests that Rosemary e-mailed to me.  I will keep you all updated, and I just wish more people understood how I feel!!!     

Hi guys! It has been awhile,I have been so busy! Hi Hodaya!Ali,keep us updated on your appointment on Thursday! Kyle-I hope the biofeedback helps you! Nanci,how are you? I am doing ok. I still get distention but not all the time. The Amitiza has been helping,I hope it stays that way. It was pretty bad,just like you Kyle. So frusturating:/ I have been dealing with other issues. Went to my new primary care doctor and he is awesome. Ran a full panel of bloodwork. Found out that I am anemic and that my Thyroid dysfunction is from an autoimmune disorder called Hashimotos. Add that to the list. Plus, I told him my symptoms he did an EKG and found an Arrhythmia in my heart,so I have my appointment with the Cardiologist today. Whew,I can't catch a break. Anyways,miss you all,keep in touch!

Kyle, i'm so sorry for the long reply. havn't been feeling so great lately with UTI :( felt really sick and lots of pain. dr gave me antbiotics and only today i'm starting to feel a bit better. this is the 3rd time i get UTI since the ileo op a year ago. it's more than all the UTI's i've had my entire life. i hope it never returns, but my dr said if it does, then better do lab work and see what kind of an infection is it exactly and treat it as should.

i don't understand, what happened to biofeedback??? aren't you going to give it a try? i just didn't expect you'll be talking ileo with your drs this soon. i do think your attitude is great about all this and you're being really brave about it. i was too. well i did cry A LOT during the mons after the colectomy while realizing it isn't working and i should start considering an ileostomy. but after crying for mons, i then decided either i chose to accept it, or to get bitter. i chose acceptance. and after the ileo op when i saw and felt how easy the ileostomy is making my life, i just loved it, cuz it is heaven compared to the way things were. i hope your tests turn normal and all your simptoms are due to your PFD. as you know my small intestine is slow and i still need prune and pear juice. but as long as those help, i'm not complaining. so even if it turns out your small intestine is slow, which i hope not, but just for the matter, if it is, then i promise you it's much more managable when at least the rectum is out of the way.

it does sound like your drs are seriously trying to help you, not like mine were. after the colectomy they like didn't want to cooporate, didn't listen, treated me like as if i was an insect bugging them. so i just asked for a stoma. nothing would have cured my pelvic floor dysfunction anyway. but it is encouraging to have drs that treat you like a human being and listen and seriously try to help you. my drs just broke my spirit completely. big part of my depression and nonstop crying was more due to the way they treated me rather than the fact that i needed a stoma. i can't express how painful it is when your drs, who you need their help, humiliate you...  i don't wish these kind of drs to anyone.

your positive attitude will help you so much through this! i think your way of coping is brave and remarkable! a stoma is REALLY not the end of the world. i just hope and pray this is really your answer and the thing that will give you the relief and quality of life you need so much. the thing that will really help you get on with your life! you've been through enough. please keep us posted on your tests results. i hope you dont have any serious problem in your gi tract.

i'm sorry i can't answer your question about supplies. it works different here. but anyone who goes to an ileo op, the hospital's stoma nurse takes care of everything, including guidance on how to order supplies when you get home etc. over here what i do is go to my general dr, he signs on the products i want to order, then i go with it to the pharmacy, make the order and after 2-3 days they call me to come take it. so yes, post a new topic, cuz i havn't got a clue hoe it works in the U.S. good luck with everything. thinking of you lots!

Mary, goodness!!! what the..... so sorry to hear about all your issues.. so unfair. it's like you fix one problem you get aother. can't catch a break, huh? hope all works out for you soon hon! keep us posted.

oh gosh.... i remember what it's like when the gas is starting to come out, and just when you think YAY this is it!! but no it just sucked back in :( this isn't working and it's no way to spend the rest of your life. i still have problems with the rectal mucous. i havn't done an enema in more than 2 mons and am in a lot of pain these past 2 weeks. i hate doing enemas. they don't work well. but good news! i went to a new surgeon yesterday to ask for help with it. and to my surprise he was amazing!!! i didn't even have to say much, he just right away offered to suction it regulary! i was shocked!! i mean on my way there i said to my self, it's a 90% he sais he can't help me... but no, he was SO kind! it's just that my original surgeon, the one who did my surgeries didn't cooporate about this, and another surgeon i went to didn't cooporate either. they never agreed to help me, so it is just hard to process it that this dr agreed to help me and so easily too....

i'm worried about you losing more weight.. you don't have any to spare! are you eating ice cream as i suggested before? ice cream is easy on your system and helps you build up some good amount of calories. many surgeons recommend ice cream for ppl who have hard time eating real food and putting on weight.

that is so great you had another job interview! but what does phlebotomy mean? what does it mean you will be doing?? cuz in the dictionary it sais like pouring blood..? in any case, best of luck! i really hope it works out!! but are you sure you're able to work right now in your condition? can you ask for some help from social security? i'm not working now and social security is helping me some. it's not much, but it's something. they are also doing me a Professional Diagnostics, which means they will work with me to find what fits me most to study and we will decide together what i study. and then they will send me to school totally on their expense. the diagnostic test is 8-9 hours!! and it's on this coming monday! they said that if at some point during the test i feel bad, we can quit and continue the next day. i'm so relieved they said that, cuz i'm in a lot of pain lately.

i wish things will start working out for you finally, Kyle. and as you said, and i agree, i think it's time too. i think there's no point prolonging this any more. time is too short and you need to get your self feeling better pronto. i never wanted it to come to this either, and sure i wish i never needed it. but the alternative is much worse. and after experincing what its like with the bag, after FEELING how much easier it makes my life, i simply loved it! i still do :)

what does rode off mean?? i assume you didn't have to pay or something like that?

Dear Moderator,

I apologize, I forgot to change my signature line. I have now corrected this.

Thank You!
Kristen

Well, I got a call back from the nurse again yesterday.  The surgeon wants me to see a new, specialized gi doc before we consider the ileo.  I know I feel better, when I feel like there is not constant pressure in my left abdomen with gas trying to expel out.  My body is so weird!  However, maybe my left side hurting all these years too could be gastroparesis.  I am not sure what the normal result should be, but my did seem extremely abnormal.  However, again, can not releasing gas and stool efficiently affect the motility in stomach?  Anyways, I have to wait 4 weeks to see this gi doc up in Springfield, where my surgeon is located, as they are going to collaborate on my case together.  More waiting!!!!    I really want to feel somewhat better by the holidays this year; that is my personal goal once and for all, gosh darnit!!  Some days are better than others, but I am getting tired of the bloat and gas, the constant hurt on my left abdomen, not eating right, etc.  I guess that is quick though because the nurse said; normally, it could take 3 months to see some of those gi doctors there.  Geesh!!!!  Why do things moves so slow?

oh i hear you, Kyle! it is so discouraging with all this waiting when you're in so much pain :( you have to tell your dr you can't afford to wait much longer with the way you're feeling!!!! the pain, bloat and not being able to eat!!

i don't know for sure about obstructive defecation (just another name for PFD) affecting the stomach, meaning i never heard a dr say it, but personally and from what i've experienced with my guts for so many years, i suspected it my self too!!! after my colectomy with ileorectal anastomosis things were working great in the first 1-2 mons as you know, but when the constipation was starting to come back, i immediately felt it was affecting my stomach too. generally, it is known that an obsruction causes one to vomit, right? 6 mons after my colectomy i was hospitelized with an obstruction. the x rays showed the location was just above the rectum. i was vomiting. that only proves that no matter where the obstruction is located, it affects the stomach. i absolutely think that any obstruction, whether it's rectal or at any other location along the intestines can definitely affect the stomach's function. so in your case right now it's not a full obstruction, but still it's an obstructive defecation syndrom and in my opinion it can definitely affect your stomach!

in any case, i'm no dr and i can't promise you that when you get the ileostomy you won't have problems with your stomach. but if you ask me, at this point, if you're in so much pain, it will be worth to try an ileostomy and see if it relieves your symptoms. i just don't understand why they have to prolong things so much. why can't they just try it for now and then try to work with the new specialist. at this point you need relief and to be able to eat. i really feel for you Kyle. i remember how i was after my colectomy and how bad i felt. i hope things work out faster.

i went to that surgeon i was telling you about. he's really awesome and really wanted to help. he tried to sunction the mucous but it didn't work, cuz in my case the mucous (same problem before the ileo, only then it was actual stools) is stuck just above the rectum he couldn't reach it. also, it was hard and dry and the tube is to thin to work with hard and dry mucous/stools. so i came to the conclusion that the enemas with paraffin oil i usually do are more effective in my case. so i will keep managing this issue on my own. it's not so bad. just have to make sure not to let more than like a month go between enemas. but at the moment i was devestated from disappointment. but i guess the rectal mucous and enemas once in 3-4 weeks should be the least of my worries.

he also did an anoscope and said the rectum looks disused, like a bit inflamed, so he sent me to do a sigmoidoscopy. crap i hate that test with all the air they pump you with :( but oh well. i havn't called yet to set an appt and it will probably be a 2 mons waiting.. i don't care. it doesnt bother me. besides, i don't think there's a real problem there anyway. but this dr is great, he listens and cares.

Kristen...... sure i remeber you! how have you been??? i'm doing great thanks. i have a loop ileostomy now and feel the best i've felt in many yrs. having an ostomy is truly not so bad, esp compared to the way things were. pls update us on how you're doing and i hope you're well!

Ali, thanks so much sweetie! unfortunately i know exactly what you mean about feeling worthless...... i havn't been working since my ileo op a yr ago!!!! except for the volunteering job. i really want to succeed in whatever i decide to study and start moving on with my life. i'm 38 yro and feel like my whole life since the age of 20 was thrown to the toilet. i really really want to make something out of my life. hopefully, it won't be long for you too to start feeling better and moving on with your life too. you too Kyle! thinking of you guys lots!

Post Edited (2b ColonFree) : 8/28/2011 4:32:08 AM (GMT-6)

Ali-Oh, I feel the same way!  I have been feeling like I am useless again lately.  The waiting is horrible.  I try to do little things like you here and there when I feel up to it, but sometimes I just feel so bad.  However, other times I am like I got to move so I can try and get this gas out!  I am so sick of being backed up, gassy, bloated, constipated!  I have tried to do things with friends at times, but I always feel I suffer for it later!  =(

Hodaya-Yes, I tried to explain last time I saw the doctor that I can't take other day of this pain.  I do not understand either, and sometimes I have been forcing myself to eat extra things at times.  I am just so ready for the gas and stool to move free-flowing.  I think that my surgeries this year have made me worse because they shorten my intestinal time, but it doesn't fix the outlet problem.  I am glad that you agree that if the gas and stool doesn't come out properly; it does affect my stomach!  I just feel I keep on repeating myself all the time, especially the past 3 years.  "I can't let out gas and stool properly.  My left abdomen really distends unless I am really bloated.  There is pressure down there.  It is an open and closed door.  I burp and get nauseous when I am backed up!"  Yes, it is frustrating!!!!  I mean, even if I have stomach problems all my life; I agree with you!  I can probably survive better with the ileo because I won't have that obstruction at the bottom.  I tried calling the gi doc's office yesterday; I am going to start calling everyday hoping there is a cancellation, so I can get in sooner.  However, I am tempted to call my surgeon again, and be like, there is absolutely no way we can speed things up.  Like you, I just get really worried about myself because I feel I am in such a fragile condition! 

Hodaya-I am glad that you found a great doctor!  It is so important to find a good one!  Also, how did your test go?  It was yesterday, right? 

Finally, I did tell the surgeon that I feel like I can't think about working at a job, when I really want to when I feel I am suffering everyday.  I did stop at Hobby Lobby the other day, and they have christmas ornaments.  I don't remember if all of you looked at the ornaments I decorated on my facebook pictures, but I am going to start doing that again.  Not sure how much I am going to charge for them, but I hope I can promote myself and do just as well as last year.  I will probably post some more pictures here in a few days on facebook, so everyone can know that I am ready to work again, and earn some money!!! =) 

 

i hope there will be a cancelation so you get in sooner. this waiting is such a waste of time for you, Kyle. thanks so much for asking about the test. it was intense, but ok. some parts of it were too easy and some less. some were REALLY anoying lol. they will call me to meet about the results. it can take a WHOLE MONTH! but that's how it is.

sure i remember your christmas ornaments from last year. they are beautiful! i saw you posted on FB, are those pics from last year or new ones? i think you are very talented and very good with art. you can also make a buisiness of it, like painting on children's bed room walls or children clinics, stuff like that. you can really succeed with that.

i hope today finds you well Kyle. i was less around lately, but i think of you every day!

Hi Kyle,

I see the doc is definitely doing you a favor taking into account your financial situation, he really is a gift. I guess just being thorough in dx'ing stomach emptying time. Maybe some slow emptying, that can be helped with meds, if the 509 half time is an issue. BUT then the ileo to get things moving. I had to wait 13 months to get my ileo. I knew early in the game that I would end up with one after my gut injury in July 2006, and it took til August 2007 to get it. THEN I had ileus for a month. SURE felt good to be able to eat again. Hoping that continues. 4 years out now and so far so good, but I am careful.

Good luck with the waiting. I know what you mean, you just want to "get on with life." Rosemary