Mental Health Challenges After Ileostomy Surgery

Hello, I'm new to this site and I have been living with an ileostomy since

1978 due to severe ulcerative colitis. The question I have is, after your (ileostomy only)

surgery, did you start to develop periodic bouts with depression and or anxiety panic

episodes? Did your bouts require medication and for how long?

   You see, after surgery I started experiencing anxiety and panic episodes on and off

throughout the years and they continue today. After researching a little about serotonin,

the feel-good chemical (which 85%-90% is produced in the intestinal tract), and now living

without a large intestinal tract, I'm wondering if there is a connection here. After researching,

I cannot find any information on this relationship. So, does anyone know of any information

on this? Thank you for reading, Geo

Geo, I'm probably not a good example, but yes, I have suffered from depression and anxiety ever since my colon was stolen by an overzealous surgeon. Most people that I have read about suffered for long periods before finally having their surgery. For me, I never had any issues, but when I got my annual colonoscopy, an inexperienced GI created a blood clot in my right leg which put me in the hospital with a blue foot within 24 hours. Two surgeries on the leg solved that issue but created lymphedema permanently in my right leg. Unfortunately, while I was in the hospital, I was put on meds that I was on record as being allergic to, supposedly for CDIFF which tests proved I did not have, and they created a roller coaster of issues, including severe blood loss requiring 4 transfusions. When I refused the meds orally, they were put into IV form and I was advised it was Ativan when I asked. After being poisoned, a surgeon came in and advised me that the colonoscopy showed precancerous cells in my large intestine. He removed my entire colon. Tests proved, albeit too late to do me any good, that he had been wrong, and either misread the test or read someone else's test, or just plain ignored the pathology given to him by the Mayo Clinic. So, although lawsuits can bring some comfort by way of money, there is nothing on God's beautiful earth that can restore my faith in anyone in a position of power and authority. Three years later, I still have a panic attack if someone comes to my locked gate. I live behind locked doors and windows and don't go out except to required doctors' appointments in order to keep my now needed medical supplies coming. Anxiety and depression are common after this type of surgery, but I am an extreme case. However, I do believe you could be onto something because if I have nothing happening to raise my anxiety level I still feel a definite lack of interest in my attitude that very well may be caused by less serotonin in my body. Most people are able to deal with these feelings with a little help of antidepressants. I'm not sure that's the best solution, but it does work for most. Good luck.

Peace

Nancy

Thank you Nancy for your input. Blessings to you.

Hi Nancy... what a horrible experience you've had, Sweetie. My heart goes out to you. I have never used antidepressants, but many people use them after removal of the intestine. I haven't seen much written on the subject, and I believe there should be much more research into the side effects of the loss of such an important organ.

I have had periods of depression in the past but always considered it to be part of the recovery process... I thought that depression was just normal with such a dramatic change in the body.

I hope you can defeat those fears and anxieties, Nancy. There is a big beautiful world out there, and you need to see and experience it. Share your love, Nancy... you have so much wisdom to give.

Love and Hugs, Eamon.

:)  You made me smile, Eamon.  Thanks.

Peace

Nancy

Words of Encouragement from Ostomy Advocates I Hollister

Happy New Year Sweet Lady   XOXO

Eamon.

Happy New Year Sweet Lady   XOXO

Eamon.

Hello Geo.

It would be great if we could establish a connection between depression/ panic attacks and the loss of intestine, especially if there was some way of overcoming it. However, in my past, I have dealt with literally hundreds of people suffering from these conditions and none of them had ileostomies.

My thoughts on the subject are therefore in alignment with those of Magoo/Eamon (above), in that a major trauma such as this operation and its after-effects can induce depression, anxiety, panic attacks and several other symptoms which are often associated with PTSD (Post Traumatic Stress Disorder).   If not treated and managed, this can continue for years after the event that triggered it.

The good news is, that there are things that can be done to help this condition and I would urge you to seek help from someone who specialises in PTSD. Perhaps try reading about the conditon on the internet and see if any of the symptoms ring a bell for you with your own symptoms. There have been some very promising and simple solutions to this problem, which has been rife with military veterans  who have come back from war zones.

I hope you can find  a resolution to your problem soon.

Best wishes

Bill

Hey Geo, my PTSD has been diagnosed as uncomplicated PTSD which, despite its seemingly innocuous definition, is a bit more complicated than most other types of PTSD. It requires more than just meds and therapy. The initial solution is to remove the patient from the persistent re-experiencing of the traumatic event. It also includes avoidance of stimuli associated with the trauma. For me, that would be doctors and hospitals. The anxiety related to a severe belief in betrayal has been translated to my fear of anything/anyone that causes the patient to relive the traumatic experience. I WILL NEVER TRUST A PERSON IN A POSITION OF AUTHORITY AND POWER AGAIN. That is a strong statement, but I realized that once I was in the hospital, I had NO SAY over my care, try as I might. I was disregarded, ignored, lied to, lied about, my records were IGNORED, and changed (although thanks to modern computers that is not as easy to do as the hospital thought) and basically I was treated as if I had no idea about my 60-year-old body and what was happening. These are very good indicators of cover-ups. Before this experience, I was a very informed and aware patient and ALWAYS knew what was going on with my physical health. I was open and trusting and I was active beyond the norms, having lived a life full of sports. Hell, I even raced in the Baja 1000 in my early 20's in the early 70's!! And that is no small test of physical stamina. I played BB in school, roller skated or biked to work, lived on the beach in San Diego and Baja, as well as being in the beautiful Bay Area of Cali in the seventies/eighties. In other words, I was not a physical slouch, but after a severe knee injury, I put on weight. The AUTOMATIC assumption of MANY doctors after my weight gain as to who and what I was was immediate and deplorable. My PCP is fully aware of me before and after, and my numbers (BP, blood work, heart) have always been and remain GREAT. But her control of my medical care begins and ends at her office. Her input is considered interference once admitted to the hospital.

So, as both Bill and Magoo have suggested, if you are depressed and anxious, get some help to figure out what exactly is causing it to persist. That is the beginning. Group therapy helps many and the meds help to keep things under control until you can figure things out. These things are NOT a sign of weakness, but rather a sign of intelligence and a willingness to continue to participate. As Magoo has just and in the past encouraged me to keep trying to rejoin society. I imagine and hope that eventually I will find that trigger that allows me to, against my inner anxiety, trust again in another human being. Until then I reside within my four walls and reach out to the world through sites such as this one to share my experiences.

Peace

Nancy

I also had to deal with bouts of depression mostly to do with the fact that I'd never see my large bowel again. I found marijuana helped with no side effects and I would never recommend antidepressant chemical drugs!

Absolutely, positively yes! I still do. Last week I was on a major pity party. You know, why me, why now. I just retired in April 2017 and picked up Maxine in July in emergency surgery. The depression started shortly after, and the anxiety when I went home a week and a half later. There were times I couldn't get to sleep and other times I woke up shaking and in fear. I don't have the anxiety as much now, but the depression will often invade me. I just keep praying and asking God to intervene and pull me out of it, and He always helps me. After all, if it wasn't for God guiding my surgeon's hands, I would no longer be here. Things are much better now as I heal. I have issues with gassy pain, and that makes me very depressed a lot of the time. Anyway, I think I will get a handle on this too, but it will take some time. Just have faith. I believe that God can and will help you if you ask and are open to His help.

I really hope you sued this yahoo!!  I am referring to the person who had the inept surgeon!

I really hope you sued this Yahoo!

Hello Geo, this is a very good question and one I have pondered many times also. I had my initial ileostomy 4 ½ years ago (with 2 subsequent surgeries since) and have been on and off medications for depression ever since. I always assumed the depression was a direct result of the trauma and major life change. Have you found reliable documentation that 85 – 90% of serotonin is produced in the intestinal tract? Interesting.

Hi Geo, lately I also have been having a terrible problem with panic/anxiety attacks. Along with this, I have insomnia and sleep apnea. I have a different type of ostomy, an ileal conduit urostomy, which has not worked out well at all for me. Numerous surgeries to repair the hernias and constant UTIs have damaged my kidneys. I have hydronephrosis, which causes me to have an insane frequency of needing to empty my pouch, at times every five minutes. Along with this, I have IBS, which is getting worse and adding to the anxiety I have. My doctor has given me Xanax, which does help, but I don't want to become totally addicted and dependent on it. Geo, you are not alone; anxiety and depression are very hard to deal with. I get a kick out of when well-meaning people tell me to try to relax. Believe me, if I could, I would. LOL. Geo, my best to you, and I hope you can feel better soon. Take care.

                                                                                   Bruce

Having access to legal marijuana is a great advantage, but not everyone has that freedom. Using what is available is just a first step, not a lifestyle.

Peace

Nancy

Freedancer, he no longer is able to practice, but money and "sorry" really don't do much for faith and trust.

Nancy

Ya know Geo, some wise, caring folks offered their takes on a subject so close to them and most others of us ostomates. It helps to know we're not alone. It helps to know others have experienced similar medical horrors. Their stories don't make us happy by any means, but we might just feel less different. As much as we know about the human body, we may never be able to accurately determine the relationship between physical maladies and emotional difficulties. Like Bill suggests, PTSD is common with war experiences that might not have been physical. Some folks might have never suffered a day in their lives and can't function without medication for anxiety or depression. Others might've been run over by an eighteen-wheeler and became stand-up comedians. Then again, there are stand-up comedians who took their own lives because of the emotional pain. We're different from each other. We feel things differently. Similarly, perhaps, but not identically. Sharing with others like us here helps. I hope I can be helpful sharing my experiences. I don't take any of you folks for granted and, relative to your own discomforts, you're all experts.

Respectfully,

Mike

Hi all,

Such an interesting post. I have a permanent ileostomy and I have had it for two years. I have had 6 major bowel ops in the past twelve months and I have TPN 4 nights a week at home and I have become the most anxious/obsessive person ever. It’s so sad as I feel robbed of the person I used to be. I work all week and function well however I am not entirely sure that this is not a permanent act. 

I am new to this site so I hope this posts.

Have a good weekend all!

Welcome MaggyMay.  You've come to a good place.  Forgive me but I'm not sure what TPM is.  

I think none of us are who we used to be.  Physically, that is.  I think some of us are wiser, stronger and mentally and emotionally better than before.

Please stay in touch.

Respectfully,

Mike

Hi Mike,

Thank you for your reply. TPN sorry, it's Total Parenteral Nutrition, so I have home therapy as I lose a lot through my ileostomy.

In a lot of ways, I am stronger; however, some days I don't see that, just the anxiety.

Have a good weekend,

:-)

Hello Maggy May. Welcome!  Thank you for your post and introducing us to the concept of Total Parenteral Nutrition (TPN). At first I thought it must be something to do with being a parent. However,  I looked it up on Google and it all became clear that it is when all daily nutritional requirements are given because the body cannot absorb them normally.  I feel its true that we learn something every day and I thank you for that.

Best wishes

Bill 

Hi MaggyMay and Bill,
I was on TPN for the first three months of my
temporary colostomy when I was in the hospital.
At the time, I thought of it as Mother's Milk,
since it was providing the nutrients that would
come from breast milk. Luckily, I'm not having
it as the source of nutrition needed, even with
my permanent ileostomy. Though I do have to
be careful of dehydration for not being able
to extract the fluids from eating foods that would
have it, as my colon would extract. Just thought
I'd offer a little comment on TPN.

MaggieMay,

TPN is the means my surgeon used to facilitate poisoning me by administering drugs that I had refused to take orally, for which I was on record as having caused severe diarrhea and bleeding twice in the past. They were administering these drugs for a disease (C DIFF) that their own tests, which they had taken, proved I did not have. They obviously knew there was no C Diff because I was taken out of isolation, moved to ICU, and the caretakers no longer had to wear protective gear (hazmat suits) that are required when treating a C Diff patient. The harmful meds were put into the "TPN" surreptitiously, which explained my continued bleeding, but I would never have known if I had not seen the ICU nurse adding them to the IV at 3 am one morning. When I asked, she innocently told me the pharmacy had forgotten to add the vancomycin and metronidazole to the fluids. I immediately ripped the PIC line out of my neck, which caused a tremendous commotion in ICU. There was blood everywhere, and I was yelling at anyone who came anywhere near me to stay away—DO NOT TOUCH ME. After less than 24 hours, the diarrhea and bleeding had completely stopped, because they were a reaction to the meds, not a colon issue, and the Mayo Clinic pathology report that was withheld from me stated as much when the surgeon received it six days earlier. I was rushed into surgery two days earlier than originally scheduled—now totally against my will, where I lay in pre-op for 5 hours where they sedated me before I was wheeled into surgery. I yelled, screamed, and cried the entire five hours before surgery and was dosed three different times with meds to "calm me down." My husband was never notified, and the Ativan and Valium allowed the doctor and anesthesiologist to "believe" that I was a "willing" surgical patient. When I tried to speak up, even as doped up as I was, the pre-op nurses replied I was "just confused" and on a lot of meds for anxiety, and so I was ignored. The teamwork of lies cost me an entire colon, (which afterward was found to have no issues other than inflammation caused by an allergic drug reaction), a right ovary, (because the surgeon "thought" he saw something—there was nothing) and a gall bladder which had a microscopic 2mm stone, so small as to be unnoticeable, and certainly not requiring the removal of a gall bladder. When getting TPN (total parenteral nutrition), make sure that's all they are putting in the bag. They believe they have the right to decide for you what course of action you should take, and get away with most times claiming standard of care.

Peace

Nancy

Thank you all for your comments. 

I am so grateful that each one of you has taken the time to reply.

Thank you!

Hello Nancy. Thank you for sharing your story, which I'm so sorry that you had to go through. Thank goodness, not all doctors are like that and most of them would not dream of prescibing medication without first discussing it with their patient. However, it is by no means unheard of and the practice of giving dangerous medication surreptitiously has increased enormously in recent years in the field of mental health. I believe it needs investigating and sorting out but, as you have hinted, there appears to be a conspiricy amongst staff to keep quiet, rather than blow the whistle. I have noticed it most in residential homes. Particularly those catering for the elderly dementing people who, if they happen  to be too active, too loud, or in any way difficult for the staff or establishment, will be drugged to such an extent that they become like the walking dead. It motivates me to another rhyming verse, which is a parody of the poem 'what is this world, if full of care?: WHAT KIND OF WORLD, IF LACKING CARE, EACH ONE OF US MUST BE AWARE, THAT THERE ARE THOSE WOULD DO US HARM, WITH NO ONE RAISING THE ALARM.  Sorry I have only done one verse at present but, during the day, I will put my mind to pen some more. Thank you so much for the concept and I hope that such horrible 'bullying' never happens again future.

Best wishes

Bill   

Hello, I'm Marilyn from the Philippines. I'm new here on this site. I hope it could be a great help for me as I am only using a plastic food wrapper for my ostomy, as an alternative to the ostomy bags themselves. I have had such difficult times dealing with this since I have this stupid thing attached to my skin, plus this improvised ostomy bag that I made. The reason I have an ostomy is that I have Crohn's disease. I couldn't afford to buy that thing because of my financial status, and I am jobless now. I don't have any financial support except from my father's low income. Anyone who can give me their leftovers is highly appreciated.
God bless everyone here.


Marilyn

There is a good chance you need to have your blood evaluated to see if you are getting enough of the right vitamins/nutrients, etc., into your system. I had a few times when vitamin D was nearly nonexistent. That was easy to fix, but nothing works overnight! Iron is hard to keep in balance if you have issues with certain foods/nutrients getting fully into the bloodstream. I have mine done every 6 months now, and if a problem starts to show, then I try to fix it and test in 6 weeks -- Dr has been excellent in helping me sort this out.

Don't wait for things to straighten out before seeking someone to sort out the reason.

Hi everyone, I too have suffered horrendously with largely anxiety, and secondly depression since surgery. It has made the battle of regaining good health very hard. I personally believe it is connected to post stress as I have noticed the anxiety heightening when anything medical is even mentioned. Though I am still at a stage that I need reviewing, tests, etc. due to this being my first year of an ileostomy.

I always say to myself, I didn't sign up for this. They said nothing of all these aftereffects when an ileostomy was discussed. 😃

But at the end of the day, I had no choice, and have to battle through it all. It is in a strange way, supportive knowing I am not alone.

Oh, I feel for you. I am about to have my surgery and am already on antidepressants. Let me know how you are doing. Where do you live? I am in Florida.