Mental Health (for those comfortable answering)

Prior to my ostomy I had anxiety, and a bit of insomnia. Since surgery the anxiety was 100 times worse especially when I had to mess with bag on my own, I am finding that it is getting better. My insomnia is still the same, I am going to see my doctor next week to see what can be done about it, I have 2 young children so its driving me nuts lol

I had MAJOR anxiety directly associated with the CD and now - nada. I don't get that feeling at all anymore and it is WONDERFUL!

PTSD since the unneeded GYN surgery took the use of my colon/rectum permanently and all those 13 months without the use of my small intestine. VERY lucky to find a doc to do the small bowel adhesion take down and do the ileo, but since finding out that the GYN surgery was not needed in the first place, despite every effort on my own to consult with 3 major hospitals (Did not know the scan upon which the GYN surgery was based had been misread....I and I guess 3 major med centers did not know either?), I have PTSD. But, working on it with a great counselor. This whole needing to change bag system is an experience, but at least I'm still around to do this. Can't wait to head off on my next travels.

Rosemary

Oh Roni,

That is very sweet. I am glad I am able to contribute something and to make something good come of something so heinous that it should not have happened at all.

Short form of my story: had (what turned out to be an unneeded) hysterectomy at 38.....that's a whole nother story. Was in the main just fine for about 10 years. Then I started having issues with incomplete rectal emptying. Bowels moved every morning as usual, but they came in divided moves. For awhile no big deal. BUT then it started taking about 8 moves over 2 to 4 hours for me to feel "done." I had to get up at 4 a.m. to be done with this routine to be to my teaching job by 8:00. I had a 30 mile commute. I was also caring for my mom who was living with me and was 86 at the time. I had no siblings, significant other, nor anyone to share the care of her with. At the same time I was settling an elderly aunt's affairs so she could get into a nursing home. I also had to sell her house for her. I mean ONE person can just do only so much. Plus the bowel thing was really getting to me. My usual bm pattern had been two quick moves in about 30 minutes after breakfast then I'd be done and out the door. Something had definitely happened.

SO, I sought help. THIS was my big mistake!!!! I SHOULD have just retired, taken care of the house and mom, and just spent the a.m. in the bathroom. BUT I missed the students and my co-worker teachers and was what I thought too young to retire. Plus I only had 3 more years before I could get retirement health insurance so I wanted to keep going. I only started teaching at 32 so it's not like I'd been doing it forever.

I went to three top hospitals in my area. Had a defecogram (movie of me pooping out rectal contrast). I was told AND shown on the head colorectal surgeon's computer a moving picture of what I was told was my sigmoid colon coming down and blocking off over half of my rectum from the side when I went to push out the contrast. SEEING that was what got me in trouble. That doc said, what they do for a sigmoidocele (the internal prolapse of the sigmoid colon) is to remove the sigmoid part of the colon and close the space through which it descends. Made sense. but sounded drastic to me. I said can't the internal space just be closed so the sigmoid won't descend and he said no. He said he could remove my sigmoid colon but this may not solve my issue. I was like why would it not? No answer was forthcoming.

So I went to a second big hospital showed them the DVD of this defecogram and the report and they said the same thing. Offered to remove the sigmoid, close the space, but said 50/50 chance this would solve my symptoms. Logically I was like, well if my sigmoid is narrowing my rectum and they are proposing removing the sigmoid then saying this may not solve my issue, then I don't want it removed. So what was the issue?

I then revisited a colorectal surgeon at another big med center I had seen when this issue all started. I showed him the defecogram and the report. I said I did not see why they were identifying the cause of my issue as the sigmoid descending and seriously narrowing the rectum, proposing removing the sigmoid and closing the space yet then saying this may not work. THIS doc said "the key to making the sigmoid removal work is to also elevate the pelvic floor. Shorten one thing heighten the other." Made sense to me then as I knew nothing of pelvic floors. Then he said he and his GYN partner do 2 of these per week and patients get 8+ years of benefit. He even put this in writing. He SOUNDED very knowledgeable.

What I did NOT KNOW at the time was that the defeocgram had been read by only a resident radiologist and that her teacher had not cross checked and co-signed her work. I also did NOT know it was NOT my sigmoid colon descending and narrowing my rectum but was only some loops of small intestines. This often happens in women with prior hysterectomies as a space can open where the uterus used to be. What I had was called an enterocele NOT a sigmoidocele totally different thing. For an enterocele all they do is push the small intestine back into the pelvis and close the space. They can do this vaginally so no abdominal incision is even needed. BUT I had consulted at three of the top hospitals near where I live and I trusted they were all doing their jobs. All this learning on my part was retroactive due to reviews by expert radiologists. Too bad I did not think to send this scan around to experts PRIOR to getting surgical opinions based on it, but what lay person would?

I did need a right ovary out too as it had a huge benign cyst. The GYN operating doc convinced me by a faked Post void urinary retention test that I retained too much urine and needed a bladder lift. I was not familiar with cc measures at the time, not did I have my records of normal post void urinary retention at the other hospital consult as these operating docs did not request any of my records, I did not think to round them up. Had I known the doc I ended up going to was just making little scratches on paper I sure would not have gone to him. We assume people are doing their jobs.

Then these 2 docs in summer of 2006 did 7 procedures on me that I did not consent to most of. They did not tell me a LOT of what they had planned to do. Interestingly my 2 ovaries made it to the path lab all benign of course, but for some odd reason my healthy sigmoid colon and the top of my healthy rectum never made it to the lab. What showed up in the lab was a length of someone else's small intestine (could not have been mine as they did not remove any small intestine and that would not be part of an enterocele repair anyway.)

Long story short, the area where they STAPLED my descending colon to what was left of my rectum (only 4 inches)... I was not told of internal colon staples prior to surgery....anyway the joined area (anastomosis) narrowed in to only 4 millimeters in diameter. That is half the diameter of a bic pen! I could not poop through that. The colorectal doc dx'd it on xray but put in writing on 5 faxes that he would "Do nothing." Hence my search for help began.

I did find a doc to dilate the area and it did stay open after 2 dilations, but what he and I did not realize was that though open, the walls of my colon in that area were no longer peristaltic, that is, they were made of scar tissue and no longer muscular and could not push poop along. SO I still had an issue. He was a nice doc and did keep scoping as I requested but each time the area was still open but not working. At this point, he turned me over to a colleague who had pelvic floor training. she had the defecogram redone. on this one it showed my rectum could no longer straighten for defecation as it could prior to surgery. this is why once per week i would have to take a half gallon of bowel prep to liquify and blast poop out of me.

she said my puborectalis muscle was not relaxing and sent me off for PT which did no good. Then another doc tried a botox shot. it did no good. basically i think there was scarring of this muscle that controls angulation of the rectum or damage to the nerve that controls it.

7 months after the surgery i ended up with small bowel obstruction after small bowel obstruction where i would throw up poop and need iv's and ng tubes. then a big testing center out west imaged the small bowel loops that were densely adhered with scar tissue to my shortened rectm but said it was too dangerous to free them up. i was told people can live about 4 years on liquids. their notes said i should keep using my peg nutrition tube which i never had.

along the way, my then pcp, did nothing to help and wrote me up as having Munchausen's Disease, as in liking to be hurt by docs so i can see more of them. she made me see a psychiatrist at her practice who cleared me of the charge and i amended that record of hers then switched pcp's. i got so frustrated at one of these hospitals i said "should i shoot myself now or wait?" it was an expression, i was kidding. guards put me in the psych ward for 5 hours. their psychiatrist said you don't need a psychiatrist you need a surgeon. i said i know can you get me one. she said no but they cannot make me hold you. she got me my clothes and said get out of here in a hurry, i sure did. during one of my small bowel obstructions one ER nurse said you again in a nasty tone. She got sent home. This is some of the political crap I had to endure in addition to basically being left to die and passed from one doc to another.

FINALLY I went back to the nice doc who did the dilations. He said you are in soooooo much trouble that either docs don't want to get involved or they want to help but don't dare for fear of making you worse. I could not be worse as I was dying unable to eat, gain nutrients or defecate without the bowel prep. I assumed not being able to eat I would form no stool but that is not how it goes. That is why I was down to only 99 lbs. He said that he would do a lysis of adhesions and an ileostomy but NO PROMISES! He said if I could get the doc that ended up doing it to do it that that would be my best bet but he would try to do it if the doc who did it ended up not doing it. The one who did end up doing it was very experienced. And that is how I finally got my life saved.

After a month long ileus (guts wouldn't wake up) I finally could eat and it was super. I could eat just about anything and it would whale right through me and I felt super, for having an ileo that is. But I did not care, I was alive and I started traveling and learning to ballroom dance. I was determined to see the world before I die type of thing as with adhesions they can always grow back.

As time went on I got food blockages from really bland food like mashed potato. Not adhesion reobstruction but food blockages at the stoma level. ONE was on a ship in the middle of the indian ocean. I did lap after lap around deck and slugged hot tea. THANK GOD all the mashed potato came out all at once and just filled the bag. This happened again and I've not gone near a potato again.

My doc who saved me the best that could be done retired shortly after my case. His replacement did a CT enterography test that showed everything to be open and no narrowings in the small bowel or at the stoma so he is writing everything up as a digestive disease which I don't have, but at this point, I just eat bland and travel and pray a lot. I always feel a heavy feeling above or to the right or left of the stoma. There is no peristomal hernia and there are several theories as to what this is, but as long as food passes through me I guess I have to ignore the discomfort.

As I cannot eat the fruits and veggies I used to and now can eat like tender protein and carbs mostly (which later break down into sugar) I have gained the weight which then threw off the fit of the appliance I was used to and made the stoma not stick out as far hence the burn.

SO, that is my story. It took me 2 years to learn what happened, then another year to find a medmal atty who could wrap his head around it. I gave a 20 minute presentation and am enroute to trial or settlement with original defendants. I am NOT by nature a litigious person BUT this is over the edge. I had asked our state board prior to my original op if my original surgeons had any claims or suits and the rep on the phone said no. Turned out they had a combined total of 8 claims and suits at the time, they are now up to 13 that I have been able to find retroactively. I did mention this in my complaint to the board and they have revamped their public info policy and now one central person gives out accurate info, not just whatever rep you get on the phone telling you whatever. I would LIKE to think that I affected some change for the good at the Board as they certainly took my complaint seriously.

If you want to really check out a doc, just go right to the court house of the city in which he or she practices and go to the civil superior court clerks office and ask. THey bring out ALL the suits and you can actually get copies for a fee. It is all public info and something nobody knows of. certainly very good docs can have one or 2 suits in a whole career as things do happen, but combined totals of 13 suits and complaints among 2 docs is over the top. I did find out after the fact that the 2 original docs were not even hospital employees but simply rented office space at that hospital thereby capitalizing on the good name that hospital has.

There's a LOT more, but this was the chronology. So lost my career, almost my life, my family (had to put mom in a home) she died this summer, cat has pancreatitis BUT is responding to meds. Have a lot of friends, and thank GOD for now I can travel and dance. Lost my LTD benefits because a doc wrote in an office note that I went on a cruise. I tried to explain that a cruise is different than slugging out a 12 hour teaching day with meetings, correcting, planning, teaching, lunch duty, recess duty. They maintained that I could go empty my bag at any time. NO it is illegal to leave students unattended. This LTD company even had spies outside my house one summer. In their reports they said I had a manual garage door as I can lug and haul heavy weight. NO my garage has always had a remote control. They were describing the wrong house. THEN in their "medical review" they said that my current ileo doc had said I pass stool partly into the bag and partly out of my rectum so I would not have to use a bathroom all that often. I'm like they will stop at NOTHING. And I know my current ileo surgeon did not say that as mine is an end ileo.

It is knowing what I now know that makes my case so hard. It's not like I got hit by a truck or got a disease and hence a permanent ostomy and whatever is happening with that, but the road I went down did not need to exist at all. Needless loss all around. BUT as it turned out I was extremely lucky to get someone to do the needed lysis of adhesions and the ileostomy or I would be long gone by now.

Roni, I think anyone would be ticked off if they got their lap top stolen and feel bad if their grandpa passed. I appreciate your insights into my partial story but you certainly have a right to feel bad. BUT, I do have to admit, my full story can serve as some perspective! They say everything happens for a reason I am still trying to figure out what that reason was. I did also find out from a local atty that there are multiple other women seeking legal help but one of my original surgeons IS the expert witness for some area atty's. The original GYN doc is big in our state med society. A case of the mayor is the sheriff is the deputy..........no higher place to appeal to. That is just a sample of the corruption I fell into. The additional stuff that was discovered is over the top, but that's another story. Like Forest Gump says Just Tell your story real and true. Sounds more like fiction that truth but it is the truth very unfortunately for me.

I know I will never be the same, but going forth is what it is all about and helping others is my way of playing forward whatever good can come of this.

Rosemary

I had a 2.5 year flare of UC and somewhere during that time I developed depression. However, I chalked it up to my use of prednisone since that can be a side effect. I had surgery and my health returned but six months later I found myself struggling with depression. I was told then that it was probably not the prednisone that caused my depression but the chronic illness. I opted to take antidepressants and within days was feeling better. I had to be treated with ADs for 4 years. The 4 years was because I was sick for 2.5 years, my surgery recovery was 1 year, and a half year for good measure. I quit taking ADs after 2 years and was a wreck so I completed the 4 year term and have been depression free now for 7 years.

Sue

Prior to my health issues, I had no mental health issues. I was diagnosed in 2008, with Crohn's and still had no issues. Other health problems along the way, including cancer, and still no problems. It wasn't until I had my temporary ileostomy in summer of 2010 that I started having some issues.

It was nothing major, but I started developing issues relating my ostomy. Anxiety! It was all situational. Basically, it was when I had to experience new things with ostomy, things that I did pre-ostomy with no problem. I remember the first 'episode' I had was when I went to the movies the first time. It was the first time being with that many people and it was also the first time seeing friends. I think it was a mixture of things. A few days after that I was about to have a work interview. Well, the night before I had a full-blown panic attack. It just hit me with one, single thought: "My bag is going to leak" and boom...couldn't breathe, etc. Not fun!

So now I am on a very very low dose of Celexa to help the anxiety. I also have Klonopin if needed, which I rarely need! I should also mention that I do have insomnia, sometimes it's more severe than other times, all dependent on meds and current health condition.

I've struggled with depression and anxiety off and on for 23 years (I will be 35 next month). In my teens and twenties I was super resistant to the idea of meds for it, and I suffered a lot in the process. It wasn't until I was 28 and trying to get pregnant and having difficulty that I finally gave in. I had a full blown panic attack at work and had to leave. It was time to admit that my mental health was interfering with my life functions and get some help. I went on antidepressants and used them throughout my pregnancy and for a couple of months after.

Then I got UC, though it went undiagnosed for almost a year because I was too confused/embarrassed/scared to talk to a doctor about my symptoms. I finally got so sick that not getting help was no longer an option. The disease and everything that came with it put an incredible strain on my already weak marriage. During the process of my divorce, I found I needed to go back on the meds and I used them again for awhile. Life got really good after that and I thought I didn't need the medication anymore so I stopped taking it, again.

After my second son was born, I got hit with a relentless UC flare (the one that ultimately drove me to surgery) plus post-partum depression. I felt like a robot most of the time, no desire to do anything or be anywhere and just going through the motions of taking care of my kids. I started having horrible obsessive morbid thoughts and it finally scared me enough to get back on meds. I was determined that I would stay on them this time. I did really well until I got my ileo and kept finding the pills mostly undissolved in my bag. If they weren't doing any good, why take them? So I gave them up again. That was in April.

By July I was in really bad shape. We took a family vacation to OBX and I was miserable the whole time. While my family was hanging out on the beach and having fun, I was sulking in the beach house contemplating ways to kill myself when we got home. It was nasty stuff. I finally decided that wasn't going to happen because it would absolutely devastate my poor husband and ruin my boy's lives.

I stumbled a long for awhile longer, and then finally admitted to my OB during my annual visit that I needed some help. She got me back on my meds, but on a non time release formula and it is working great with my new plumbing! I still struggle with some emotional after effects of the chronic illness and surgery process, but my j-pouch is working wonderfully and I finally have hope for a mostly normal future.

Roni-Ro...

Thank U for your post. In my case, 43 years of severe bowel problems truly affected my mental state & I was @ my end, when the police took me @ gunpoint 2 the Psych Ward @ a Hospital. This was my 1st experience with Psych Doctors & Therapists. My chronic health issues were definitely related 2 my mental & physical state.

I finally had an ileostomy almost a year ago & this has really helped tons. I would never go back 2 the way it was. I am a recovering addict/alcoholic & I can tell you that my addiction was ALL do too my health problems. Its terrible how your medical struggles are in side by side relation.

Does your Ostomy affect your anxiety & depression? If you don't mind me asking, have you tried any medications for your anxiety & depression? Please don't answer this if your not comfortable.

I hope things get better for you, & pleez keep coming back, your story helps the next person.

Smilez,
Serenity

rosemary.......WHAT>>>>>>>>>THE>>>>>>>>F?!?!?!?!?!?!!?!? wow.........that is heartbreaking.....i started really getting upset right before you said you went back to the nice doctor.......that is so scary.....and i cant believe that about your LTD.......i really hope everything continues in the right direction for you.......these things really DO make you wonder the "reason" for all of it....im so sorry...........

side note, i was wondering if poop could be vomited becuase i really thought that happened to me when i had an ileus and before then KNEW i had one...idk it could have been bile i suppose.

also, what general area are you located in, if you feel comfortable saying.....(i know with the litigation, you may not want to give away too much) but at a basic level, you are in the united states right?

wow that is just insane............i sure hope everything works out as best as it can for you!

Whoa, zirconia. THought I was the only victim of iatrogenic injury. Click on my name and email me if you want to really talk. I know a great medmal if you need one and are anywhere near me. It is a TON Of work and there are NO frivolous suits. But if you have life long injury you need the money for living and ostomy supplies. BUT what we really want in our body back. Whole thing so sad. Thanks for response. Rosemary

I've always been slightly insomniac... my preferred hours of sleep used to be 4am-noon. I never had problems staying asleep, but /getting there/, now, that has always been a bit of a struggle...

From December to mid-February, I entered a severe flare of UC, though, and I was just so fatigued from blood- and fluid-loss that I slept all the time. Upwards of 16hrs per day. And the hours where I was awake were so miserable and laced with pain that I'd hardly call those 'waking'.

During my three-week hospital stay and surgery, however, I got little to no sleep. Before surgery, I was simply in too much pain... and I absolutely HATED the high-dose IV steroids they put me on - after each administration of them I felt claustrophobic... I became emotional and anxious and I felt like my heart rate and breathing slowed so much when I began drifting of to sleep that I feared I wouldn't wake up again. The first night after surgery I made my parents 'keep watch' so that I "wouldn't stop breathing", lol.

Today was my first day completely off prednisone :) and with the prednisone, much of my insomnia has also passed. However, I still take a long time to fall asleep (though the hours are much better) and i have to wake up once a night to empty my ostomy bag. Maybe I should stop eating at night ;p