HealingWell
Search Close Search
☰

Need support and not even sure where to post Anymore!

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/25/2013 4:37 PM (GMT 0)
Hey all...
It's been forever since I've posted on here and I wish it was because things were going so well, but unfortunately that's not the case. I don't even know where I left off or who's still around that remembers me. My name is Lizzie...I'm almost 33, a registered nurse, but have been on disability and unable to work due to my declining health and surgeries/complications since surgery number four. I was diagnosed with CI in 2007 and my first surgery was in Jan 2008 and a Total Colectomy with ileorectal anastamosis. After my initial surgery, it was a cascade of crazy complications, numerous surgeries, infections, hemorrhaging, abscesses/drains, open wounds, failed surgeries, new problems, too many hospitalizations to count, and this journey is not come to an end.

I have now had eight surgeries, seven of them open, and four emergent situations. My last surgery was August 2013 after over a year of pain, vomiting, distention, and both CC and Rush in Chicago as well as my local hospitals missing a backpack sized mass in my pelvis, entangled uterus/ovaries, dense adhesions covering my entire pelvis, scarred down bladder to my backside, atonic bladder, multiple cysts impinging nerves, and inoculated fluid filling pelvic floor. After nearly 13 CT scans that year (leaving me high risk for future CA d/t amount of irradiation) a local gyn/oncogene surgeon palpated what she felt to be a mass and ordered a long overdo MRI that reviewed a pelvis they said 'is messier and more complex and scarred with adhesions than that of a patient receiving years of chemo/radiation for pelvic cancer!'. I was sent to my current physician who only takes on complex cases and he put together my Aug surgery that involved three surgeons: colorectal, urology, and gynecology/oncology. The surgery was a success in many ways...they cleared out everything leaving me unable to have a child, the mass was thankfully non-malignant, and I thought after recovering from the infection and other complications I may just be on my road to recovery. I thought too soon.

I am now dealing with a whole new set of issues/symptoms and I'm not even sure HW or here is where I should be posting :( As fall as my bowel...I have an end ileostomy on my left side. After many failed stomas, too many small bowel obstructions to count, spending most of that two years in hospital, severe adhesions, dumping syndrome, failed kpouches at CC, failure to thrive with a feeding tube, and more I had emergency surgery at CC with Dr. Stocchi who saved my life at that time with a very risky relocation surgery in late 2011? I honestly can't remember dates anymore :(

I had been having urinary problems as well as pelvic pain that took over my life, but CC no longer felt they could help me at that time. To make a long story short. I was diagnosed in 2010 after sudden weight gain and edema like I've never seen with an atonic bladder...basically I have nerve disease/inertia/dysmotility in my bladder as well. If I fast forward to now...I am still unable to void on my own most of the time. After my Aug surgery, I had an additional 15-20 lbs if edema come on within 2 wks which prompted my dr to look more into the bladder and kidneys. After many tests, specialists, presentation of my case to John Hopkins (CC, uofM, and many other facilities felt they could not do anything for me) and they have been breaking down my body system by system. Basically as of recent I have an atonic bladder needed cathing and suffer from recurrent UTI's and abx, severe hypokalemia d/t inability if body to tolerate meds for edema landing me in hospital over and over on cardiac step down unit, I recently had pre-renal failure in Mexico (first attempt at vacation in five years) and ended up in hospital in MX :( I have new cardiac symptoms of acute hypertension and persistent tachycardia and on meds fir this (ive always had very low BP),renal system is compromised...I only have 200-250 ml's of urine output daily even with catheters. I also have some systemic disease that they cannot diagnose at time. They found two tumors on my adrenal gland, but as of Tuesday the labs associated (Aldosterone/renin) are showing the tumors are most likely not active and that this is secondary hyperaldosteronism due to another disease!!! BUT the whole slew of drs I have involved: nephrology, urology, endocrine, cardiology, hormone specialist, and my pcp are all still trying to put together the pieces as many things don't make sense and are leaving the drs stumped and me in a holding pattern with no quality of life and living at drs appts and hospitals.

My bowel was doing ok for most part...but about a month ago I started having increased nausea, constant vomiting, weightloss, foul foul odor from output, and excessive gas and pains. At first I thought it was maybe from the recurrent UTI's and inerstitial cystitis, but it has not let up. I attempted my second vacation in five yrs just in April and ended up admitted to hospital there with nausea/vomiting, dehydration, and sixth UTI. I have lost 13 lbs since April 1st and have no idea what's going on and thought maybe you would have some input?! They did a CT while admitted that showed adhesions from back of bladder to old rectal area and fistula could not be ruled out (but chances are low), inerstitial cystitis I am seeing urology for May 9, and at time no obstruction was evident thank God! Uh oh...speaking of gas...bag is leaking all over me (this has been common once again and stoma retracted) and I need to get this taken care of and I see cardiology in an hour :( Please let me know any ideas about the bowel stuff. I'm sorry if this makes no sense with all the crazy symptoms.

Miss everyone!

Lizzie
Posted 4/25/2013 5:57 PM (GMT 0)
lizzie- what a long and tragic story for you. I didn't read it to the full detail yet. But as for your current bowel issues - have you had a cdiff test done recently? Some of those symptoms that you describe scream cdiff.
Posted 4/25/2013 6:15 PM (GMT 0)
My heart goes out to you. I'm happy to hear from you again. Last year when you were at Rush, I wanted to come visit you, but because you don't know me, I didn't know how you'd react. My GI is at Rush, live a little north, so I'm familiar with the hospital. I think of you, EACH and EVERYDAY!

CI is just an astonishing disorder. It's hard to wrap my brain around it because of your decline. And with a history like yours, doctors seem to treat one episode at a time. Ultimately, this is a systemic disease. What is the question.

If I may compare, I know someone with some of your mysterious symptoms. She had, due to diverticulosis, a resection last year. Prior to surgery, she was having adrenal issues. Post op, her adrenal issues stopped and stumped her endocrinologist. 6 months later, she's having nerve issues, sweats, hypertension. She found a new GI at Loyola, suspected having pheochromocytoma (rare endocrine adrenal tumor), but tests showed nothing. But is still suspected because it's so very hard to detect. My suggestion to her is to go to Texas, they have the best adrenal disease center. She now suffers from more nerve damage, and her kidneys are declining. Not to mention 25-30 bm's a day. And her doctors have dismissed her being a complex case. I'm trying to advocate help.

After your hysterectomy, is your bowel becoming stenotic again? Is this the sign, based on your past surgeries, of recurring adhesions?

If you want to come down here again, Northwestern has fantastic departments. Rheumatology and countless others. Interestingly enough, I came across an article of a doctor there....Dr. Burt, an internist in the division of immunotherapy. He does stem-cell research/transplants. You need brilliant minds on your side! My brain has been on overload lately, excuse me for my out of the box mentality.

I hope you have a promising cardiology appointment today and wishing you nothing but my best!

Post Edited (windy city) : 4/25/2013 12:18:13 PM (GMT-6)

Posted 4/25/2013 6:19 PM (GMT 0)
It's a lot to take in :( Sorry for lengthy post...it's just hard having very few people to talk to about all of this. I have not been checked for Cdiff?! I know what it is from my nursing days, but have never had it myself amazingly. I see my colorectal surgeon, but not until May 15 and I just can't eat without severe nausea, vomiting, and my output is just awful smelling which is not the norm considering I have no colon and only part of my small bowel. The gas is excessive and so loud which is also not my norm?! I could call today and ask if they think giving a sample is worth it as May 15 is still quite a ways away. Thanks for responding!
Lizzie
Posted 4/25/2013 6:27 PM (GMT 0)
OMG it really does sound like C. diff! It is a pretty simple test (especially since you can just scoop your sample out of your pouch -- my PCP was like "uhh I don't know how you can give a stool sample for this" and I said "are you kidding? I CARRY A BAG OF STOOL WITH ME"), the important thing is to give a fresh sample preferably directly to the lab, as the longer the sample sits around the less accurate the results. Your doctor should be able to give you a referral to a local lab like Quest, etc.

Wish I could be of more help but you have my deepest sympathies, you are going through so much and seem to be handling it with a lot of grace. Keep your spirits up and best of luck
Posted 4/25/2013 7:09 PM (GMT 0)
Windy City-
Thanks for your response and kind words. I'm going to type fast as I'm waiting on cardiologist for new holter results. I would have been completely open to you coming to Rush to visit...it's so nice to meet people who understand what your talking about and going through. I had great care at Rush...I saw Dr. Sacralides and a few others I'm drawing blanks on their names. Unfortunately they too missed my pelvic mass, but so did a lot of people :(

Since my hysterectomy I've had very high Aldosterone as well as Renin. With both being high, its not usually from the adrenal tumors, but it can be if it were a rare renin-producing tumor. With both elevated and normal cortisol it's usually indicative of secondary hyperaldosteronism which can be from a number of diseases. Researching I have come across pheocromocytoma (sp?) when I've been looking at my symptoms. I have the new hypertension and persistent tachycardia. I also have a lot of numbness and tingling....DR WALKED IN AS I WAS TYPING.

The cardiologist must be reading your mind. He is checking for carcinoid syndrome as well as renin-producing tumors such as pheocromocytoma. Because I've had so much irradiation he is just going to check with my hormone specialist-internist to make sure safe, but she will ok it I'm sure as she thinks all my symptoms are endocrine/nephrology related. He is seeing me in a week and put me on a new BP med that will help lower my heart rate. Holter showed tachycardia with PAC's causing palpitations which I expected. My cardiologist is doing more than my dr who has just been brushing off symptoms he normally would be jumping on. I feel that drs get frustrated with my case and when they can't figure it out and things don't make sense they don't know what to do :( They have even at times in past (ie. the pelvic mass that was undetected for a year) tried to pull the psychosomatic card which just hurts.

As far as my stoma and bowel issues...ish what's going on :( I've not had any obstructions caught on scan, but symptoms that correlate and more of pseudoobstruction nature?! This nausea and vomiting being so persistent is new in last month as well as the foul odor, intermittent stoma retraction, and excessive gas and noise from stoma. It's so loud it's embarrassing. I thank you so much for responding and for your kind words.

Lizzie
Posted 4/25/2013 7:14 PM (GMT 0)
"I was diagnosed with CI in 2007 "

what is CI?
Posted 4/25/2013 7:15 PM (GMT 0)
oh lizzie.. you absolutely must be checked for cdiff. As I said previously.. your symptoms scream cdiff - horrid odor and massive gas. Plus with all of your hospitilizations, your poor little body is ripe for cdiff.

Get the test done NOW. Your PCP can order this. And then go straight to a hospital lab to get it done, as results will be back to your PCP very quickly. (I personally don't use the Quest facilities because they take a longer time to get results back and they don't provide automated results that I can look at online through my providers and that my providers can see online.)

If your PCP won't order this, call your colorectal surgeon's office and have them fax an order directly to you for it. And then you hand carry that order to your local hospitals lab and empty a sample from your ileo bag into the little cup they give you. Easy and painless. In fact, its probably the easiest and least painful of any test I have ever done.

If you have cdiff you do not want to wait to get it treated. Let alone the fact.. that it is making you miserable, it can cause very serious long term problems. and whatever you do - do not listen to any doctor that tells you that you cannot get cdiff without a colon. That is a complete lie.

so please go get tested.
best wishes
Posted 4/25/2013 8:15 PM (GMT 0)
That's nice of you to say Lizzie. Some people are not open to seeing strangers when hospitalized. I, like what I now know of you, are always open to seeing people that can empathize and relate. My GI referred me to Dr. Sacralides, though I chose another cr surgeon. Shame they missed the mass. Makes me shake my head and wonder.

I believe, as well as my cr surgeon, that my friends adrenal issues are related to all her symptoms. Caused her ATypical Diverticulosis too. Her countless doctors have all dismissed her. Psychosomatic and IBD is now everyone's answer. She has each and every one of your symptoms. I'm glad, that at least 1 doctor, your cardiologist, is looking further. There are correlations and I hope you get the answers you deserve. I'm frustrated that the doctors are frustrated!

Call your cr surgeon, might be cdiff. I was tested once when hospitalized for a small bowel obstruction. I asked...but it was the resident, if cdiff could cause all my symptoms? I had all of yours plus full blockage. He said yes but never asked my cr surgeon.

(((((Hugs))))))
Posted 4/26/2013 3:20 AM (GMT 0)
Thanks everyone for your replies. My pcp and internal med dr arevoutbof office tomorrow, but I can call my colorectal surgeon here in town and I'm sure he will just enter in system and I can r/o that as cause of these miserable symptoms. I have to get some strange labs the cardiologist is ordering for the renin producing tumors. I also am about 99% sure I have my seventh UTI in a row since Mid February. I have very little urine output to begin with, but today it's just drops and the burning, pelvic pain, flank pain, and razor blades are pretty indicative. I just finished my sixth round of Cipro with a few IV Rocephin doses. I do not see urology until May 9 ish either to have testing to r/o fistula, check for regurgitation of urine into kidneys, and address interstitial cystitis. Hopefully I can have cr surgeon order UA and Cdiff to get out of way before wknd.

Some dude-CI is colonic inertia...that was my original diagnosis, but it then affected rectum, small bowel, and now bladder and is termed more as global inertia and dysmotility. It's a neurogenic disease that affects systems in a nasty way.

windycity-I am so sorry for your friend and its so sad when they try and pull the psychosomatic card when they are stumped. My hormone dr and cardiologist are convinced its something endocrine/nephro related. I still have 20 lbs of edema and although this vomiting has caused weightloss, I am still so heavy for my normal, ESP after such a drastic and extreme switch from 87lbs and failure to thrive with tube feeds. I hope that she gets the help she deserves :( My heart breaks for her...does she have adrenal tumor(s)? And what symptoms is she having? My entire hand and arm is numb from typing this which is new in both hands/arms. I also have malabsorption and low vit D and B12 I found out Tuesday. I also never EVER EVER sleep!! Insomnia rules my life in a bad way. My thyroid is borderline. Is your friend in Chicago? If I can help in anyway lmk.

Thanks Again for all of your responses and kind words. It's nice to have some support. Thank You. Xo

Post Edited (XtremeMisery) : 4/25/2013 9:23:13 PM (GMT-6)

Posted 4/26/2013 3:29 PM (GMT 0)
Holy crap. I guess some people do have it worse than me after all :-/

I don't have any ideas or even a clue really, but I just wanted to express sympathy - as utterly, utterly useless as it is - for all you have been through. I hope you catch some sort of a break soon! :-/
Posted 4/26/2013 8:38 PM (GMT 0)
Lizzie,

Glad to see you back on here. My whole issue aside. You now my heart goes out to you with all these multi-issues. Maybe others will have some helpful input and maybe even some people just "lurking" as they say will be able to jump in with some info. Especially hard when nice weather comes to not be at one's best. I am going to try and slowly walk around my favorite park and slug some boost. I hope they get a handle on this vomiting issue for you. That is the worst or certainly sounds like it. R
Posted 4/26/2013 10:18 PM (GMT 0)
NCOT-Thanks for your kind words. In order to not get angry, I try and tell myself that God only gives you what you can handle and that I must be pretty tough :) May sound cliche lol, but its what gets me through the days...that and my supportive husband and family and friends. I don't know your story, but I posted on your post regarding the stoma :( and I wish you nothing but the best and if you need anything lmk.

Rosemary- you know I dont dwell on anything...I'm just concerned and worried about you emotionally and physically. I'm glad your home and hoping you got out to walk around the park. Text me and update me when you can.

I was going to get my output checked and UA and labs, but forgot I was going with my mom to visit my sister in prison as its her bday tomorrow :( I miss her so much...many tears. She gets out in Aug and just pray she can stay clean. Addiction is so traumatizing. We were there four hours and its 2 hrs there and back. We're headed back as I type...I'm in so much pain in pelvis from UTI and peeing razor blades and so incredibly nauseated although I've not eaten at all except one tiny but yesterday and that's it in last three days. Output today again was bright yellow, grainy, and so foul. It's so embarrassing and not the norm. Will prob end up at urgent care tomorrow as I'm not sure I should wait. Oh God...we just ran out of Gas...
Lizzie
Posted 4/26/2013 11:18 PM (GMT 0)
Xtreme - You're welcome :p

I'm an agnostic atheist (would like to believe in God in a way, as I think it would give more meaning to life. I can't manage it, but I don't proclaim absolutely that there isn't a God either). So unfortunately I can't really console myself with that, although some days it does feel like 'some' thing out there is testing me... :-/

I'm really, really tired now, so this will be my last post of the night on HW. Goodnight :p
Posted 4/27/2013 3:03 AM (GMT 0)
NCOT- It doesn't matter to me anyone's beliefs and each of us believes in different things and faith or not, I and the rest of HW are here through your trying times. Just know that somehow, somewhere better days are around the bend. I've had many days I can't believe God or a higher being could let anyone suffer so greatly, but for me my faith has been my sound ground that carries me through the days. Rest up and take care!!!

My mom and I ran out of gas an 1hr30 min from home :( Quite the experience. I'm exhausted, in pain, infected somewhere and so sick to my stomach. I've been unable to eat all day and barely drank from the nausea. I'm afraid I'm going to end up in urgent care or ER tomorrow. It's nights like this, I can't imagine this life for much longer and need a diagnosis. Thanks everyone again for your kind words.
Xo
Lizzie
Posted 4/27/2013 4:06 PM (GMT 0)
I'm so sorry... :-/

Just being unable to eat and drink would be a wretched experience for most people. I hope you can eat/drink something soon, because I'm sure that would make you feel better. Hoping that you don't end up in ER tomorrow (or today now, most likely). Best of luck! :-/
Posted 4/27/2013 8:23 PM (GMT 0)
I haven't read through this thread, but feel free to post anytime even if it's not "digestive" -whether it's to vent or seek support.
Posted 4/27/2013 10:42 PM (GMT 0)
Thank You ActiveUCer for your kind words!!! I'm just not sure if anyone will have suggestions, but at least it's support!!

I'm not sure what to do today and if I should go to ER or urgent care. I had barely eaten in last 4 days so I tried vanilla cone this am and within 20 Min, I had thrown up everything. I just now tried some isherbet, 1/2 c white rice plain, and 4 saltines and tiny bit of 35 calorie cheese. I'm doing everything in my power to keep this down, but not sure if its going to work. I have no idea what to do about this nausea anud vomiting :( I just may have to go in and r/o Cdiff as its the only thing you wonderful people think it could be!! I just hate urgent care or ER and trying to explain my situation over and over, but do not feign good :(
Posted 4/28/2013 1:12 AM (GMT 0)
Lizzie I understand how much urgent care or ER is terrible for us real sickies. Been there done that far more than I'd like to explain. So first ditch the urgent care idea. They are useless unless you need stiches or have an ankle sprain!

ER is one step better cause they can always admit you and you can eventually get to real docs. I am worried about the cdiff for you. And also wondering now if you have a real blockage since you are vomiting. As a perm ileostomate and having an ileo off and on for five years.. vomiting is the sign to go the the ER. So please.. .suck it in.. and go to the ER. Maybe I'd accept you waiting until the AM because you might get a little bit better qualified resident on a Sunday AM than late on a Sat night. But I am thinking you are probably very dehydrated by now and at least in the ER - until they get a hold of the colorectal surgeon on call - you can get iv hydration.
Keep us informed please.
take care.
Posted 4/29/2013 3:39 AM (GMT 0)
Well, I think I may just have to surrender and go to ER tomorrow. I always wait things out and tonight I feel awful. I decided it would be smart to 'Spring Clean' and it wasn't such a good idea. Afterwards I got chills, trembly, sob, and had fever. I had 1c of sherbet and felt so sick. I know I have UTI as well and prob need IV antibiotics. I will have them check for Cdiff, otherwise I'm probably having pseudoobstructions from the inertia in my small bowel?! Idk who knows. I just think I've waited long enough hoping symptoms would just go away. I will update when I figure something out. Thanks so much.
Lizzie
Posted 4/29/2013 3:54 AM (GMT 0)
Lizzie,

Thx for your call today. I hope you find out what is wrong. All this vomiting is awful for you. ActiveUCer had a stomach virus but yours has been going on for so much longer. ER is the "nightmare" place but sometimes we gotta do it. Good luck to you. keep me posted. RJ
Posted 4/29/2013 5:44 AM (GMT 0)
Rosemary-Your welcome! Please just think about the things we talked about and know I only have your best interest at heart! I think everyone does...

I had the flu this winter as Michigan has had an extremely sick winter! I was sick for 3wks and ended up inpatient in ICU step down:( This vomiting has been almost daily with 95% of meals for a month straight. Idk what's wrong, but I can't sleep from the nausea and pain from trying to urinate tonight. I have chest pain and sob. Feels like an elephant on my chest...I think I have no choice but to call dr or go in :(
Thank You! Everyone for Everything!
Lizzie
Posted 4/29/2013 10:38 PM (GMT 0)
On my way to ER :( Finally succumbed after fever started two hrs ago. I called doctor and the fever, nausea, vomiting, UTI symptoms and my hx I have to go! So I'm just headed in :(
Lizzie
Posted 4/29/2013 10:46 PM (GMT 0)
Hope you're able to get some relief!
Posted 4/29/2013 11:05 PM (GMT 0)
Good luck lizzie. I am thinking of you. I am so distended I can hardly see straight. Hope I don't end up in our ER. LMK I will check my texts betwEen shutting phone off to save battery. RJ
✚ New Topic ✚ Reply
123