One Month Tomorrow Since My Surgery - New Stoma need Support

[AJY84]

First off, hello all once again. It's been quite some time since I've been on here to actually post vs. Just reading some helpful posts.

At the end of April I had a colonoscopy done, and my low grade dysplasia had in fact transitioned into high grade. At first the surgeon had proposed to do the J pouch method, but after reading up on it for people who suffer from Crohn's colitis I talked to my surgical team about opting for the permanent ileostomy. The surgery, for the most part, was a success. However, my rectal area became infected. Was rather shocked it took the surgeons as long as it did to pinpoint the cause of the infection. Especially after being told, "It's quite common. 1 out of every 3 people get a rectal infection after surgery." I went through night after night of chills, but then feeling perfectly fine during the day. By the time the source of the infection was located, necrosis had begun to develop. I ended up having back to back debridement surgeries. I'm also still currently hooked up to a portable wound vac. It's been getting better, albeit slowly. Shortly after I was discharged, I ended up in the E.R. closer to home (I had the surgery done at Johns Hopkins) w/ severe lower back pain. I passed the battery of scans and tests. The cause ended up being muscular pain, due to the fact that my total colectomy surgery was 11hrs long, and that it became very difficult for me to pass urine while standing. I was admitted for six days. The only thing that helped the lower back pain was 2mg of Diluadid via an IV injection every 2hrs. I was also given Uroxatral and a muscle relaxer to help w/ the passing of urine (which it did thankfully). Eventually the Diluadid lasted longer, and the lower back pain eased up. When I was discharged, it never occurred to me that my body had become dependent on the IV narcotic. I wasn't weened off it either, just stopped cold turkey, and given Percocet instead. That in turn led to some nasty withdrawal symptoms that lasted four days (glad it wasn't any longer). It's been three days now since I've taken any Percocet or muscle relaxers, and the back pain *knocks on wood* hasn't returned.

The biggest issue for me right now is my depression. I have Borderline Personality Disorder, and currently take 10mg of Paxil + 100mg of Seroquel daily. I know professional help is the best course of action in conjunction w/ my meds, but I can't get anywhere on my own. I know I shouldn't feel ashamed of my stoma (which I've named Cujo), or the bag. Despite the overwhelming number of people that have this surgery done, and live happy and healthy normal lives, I... I single myself out. I feel like I'm a freak. Thoughts of suicide keep creeping into my mind. Most days I cry at random times (which is odd, because I never cry). I want to be able to move beyond all this, and just finally live life after suffering w/ Crohn's colitis for 24yrs. I just can't seem to see the bigger picture.

 

[Clash]

Just wanted to send hugs I haven never experienced CD or surgery but I empathize with all your going through! Hugs

There are a number of members with stomas that could be helpful in helping you with their experiences.I'm going to tag 2th Fairy and Unxmas.

 

[UnXmas]

I'm not surprised you're emotional, you've been through a major physical and emotional trauma. I wish I could tell you how to feel ok with your stoma. I didn't seem to need the time to adjust to it afterwards which is necessary for most people. It helped a lot that my bowels had caused me so much embarrassment before, and the ileostomy was a major improvement for me in that respect. Your stoma shows you've had a physical illness, it doesn't indicate anything about your nature other than that you've had a lot to cope with. I think it could still help you to continue reading about others who have stomas. Problems with acceptance are common, especially among people who have had the surgery recently, but you will also see that people with stomas have families, careers and social lives. It is not going to stop you having those things.

Also, if you have any problems with your stoma at any point - leaks, skin problems, etc. - don't feel you just have to put up with them. There are usually solutions if you ask your stoma nurse or start a thread about them on this forum.

Btw that's the best stoma name I've heard.

 

[UnXmas]

Also, stopping pain meds is horrible. But you got through it. Don't feel you can't treat pain if you need to though. There are some non-addictive options should you need any long-term pain relief.

 

[SupportiveMom]

Rectal infection 1 out of every 3? I certainly didn't hear that one! Thanks for telling me. I hope my kid is one of the 2 or 3's. I can't pretend to know how you feel (it's my kid with crohns, not me). Just make sure you know you aren't alone. I don't know where you are located but if there is an onto my chapter try calling & connecting. The might be able to recommend a member to help support you through the transition.

 

[Jennifer]

Hi AJY84. I moved your thread here so you could get more replies from people who understand where you're coming from.

I've never had a stoma but know that it's life changing and can affect you mentally quite a bit. For some yes it's a wonderful thing but for others it may take some time to feel that way. I encourage you to talk to your doctor about your feelings and see if they are willing to adjust your medications for depression to help you through this transition as you do seem to be suffering from crying spells and thoughts of suicide are never good. My husband used to have crying spells and occasional suicidal thoughts but from another illness, a change in his antidepressant helped. It's a start but talking to other members on here will also be a big help.

Keep us posted on how you're doing.

 

[2thFairy]

Rectal infection 1 out of every 3? I certainly didn't hear that one!

That's the first time I've heard that. I don't think that's accurate.

 

[2thFairy]

Welcome to the Cool Kids Club, AJY84! My initial plan for stoma surgery was 3 months with ileo and then go back for reconnection, as I did have the J-pouch surgery. Before surgery, I told my husband that I didn't plan to leave the house for those 3 months in between, as I really was freaked out by the idea of everyone knowing I had it or that it would leak, etc. One week after surgery, he convinced me to go to the pharmacy just to see our favorite pharmacist and say hey. Well, that gave me a tiny bit of confidence that quickly grew into full fledge going wherever I wanted in short time. I still had great reserves about certain situations, but I carefully planned my backups (stoma supplies, change of clothes, extra water to stay hydrated) if I needed them in case of accidents, and went through a whole mental routine of how I would handle the situation if it happened. The more I went out, the easier it got, and soon I started to not care so much about the "what ifs..". I still carry backup supplies if I am going to be away from home for hours with no way to easily get back home, but I don't worry myself like I used to.

When the 3-month mark came around and the surgeon said I was ready for reconnection, I told him I wanted to keep my ileo. Reconnecting to a J-pouch involved trips to the bathroom up to 20 times a day initially and possibly a year to get any sort of regular pattern of 5-6 trips to the bathroom a day at best. At 3 months with an ileo, I had more freedom and health than I had had in 20 years and I felt the reconnect was a step backward. I've had it now for 3-1/2 years. Last year I went back to school and now work in surgery assisting the surgeon. No one at school had any clue I had an ileostomy until the day I gave a presentation on total colectomy with J-pouch surgery that ended with a show-and-tell that involved Sideshow Bob, my stoma. It was awesome! I work in the operating room all day and my co-workers and surgeons don't know I have it.

I wish you great results with your new stoma. Not everyone has a good experience, but please do know it is possible.

 

[AJY84]

Thank you all for the advice and support. Aside from the depression factor, the other hurdle I'm facing is the eating part. I have almost no appetite, and whatever I am hungry for (still on the low residue diet) I only seem to be able to handle 3 or 4 bites before I feel full. I've tried to force myself beyond those bites, but I just end up feeling nauseated if I push it. The most I can do is keep well hydrated. I feel tired all the time, though I don't know if that's because of the depression, the healing from surgery, or both. I've been looking into professional therapy to try and help my mental state.

 

[AJY84]

That's the first time I've heard that. I don't think that's accurate.

Yeah, I'm not confident in the surgeon and his team that did the procedure. Especially after his number one kept coming in to check the rectal area, and insisted everything was okay (despite there being a very sick smell coming from there). I've requested all medical records to be transferred to me and a surgeon in my own town. I wasn't impressed w/ Hopkins.

 

[UnXmas]

If you're not getting enough calories in, that could be a big factor in why you're so tired. I found it really hard to eat after my first stoma surgery (I had post-surgical ileus) and just walking upstairs was exhausting in the weeks recovering from surgery. Once I was able to get more food in, my energy levels improved.

Are you having any liquid food supplements like Ensure or Fortisip? These can help because liquids are not as filling as solids. They also provide you with all the vitamins and other nutrients you need, which can be useful on a low residue diet which restricts fruits and vegetables. Having the supplements also means you don't have to worry about your diet being balanced for the moment, so when you do eat, you can eat whatever food you feel like which can be a big help when trying to put weight on. For example, if you want to eat ice cream instead of a cooked meal, you can do so and know you'll get your vitamins from the supplements (this is just a short term measure).

Are you on any anti-nausea medication? It may be worth checking with a doctor if several weeks have passed since you're surgery and you're still finding eating a struggle.

Therapy may be a good idea. I've read that depression is common after major surgery (and when you think about it, it seems natural that depression is a common result), so you may be able to find a therapist who's treated others in a similar situation. There are also many complimentary therapies that can help; I've read about things like massage being used to help people get used to the physical change that the body has gone through. If that's something that appeals to you, it might be worth looking into. If not, there are more conventional treatment options; I've found antidepressants have helped more than I thought they would be able to.

I hope you'll start to make good progress soon, physically and mentally. Don't hesitate to seek medical help if you think you might be getting too malnourished. Also keep a check on your temperature. Nausea, lack of appetite and lack of energy can be symptoms of an infection. I'm not sure how long it's been since your surgery, but infections can occur even several weeks afterwards, which can be stopped quickly with antibiotics. Checking your temperature is a good way of checking yourself for infection.

 

[bobbiefiles]

Hi AJY84! I had a Subtotal Colectomy on May 4th, so I am about 6 weeks into it. I understand very well the depression that comes along with it! I have my "why me" moments more often than I want.

I am currently having issues with Stumpy the Stoma as it appears that I either have an infection OR he is no longer attached to the skin around it and am heading back to the Surgeon on Monday.

I so want to get on with my life, jet-skiing, ATV riding, jumping from planes, etc....and feel that this is stifling my lifestyle. But I can say that I feel healthier (even with the Stumpy issues I am having now) than I have in a long time. I know that I will be back to living my life soon and I will be damned if I will let Stumpy stop me!!

My heart is with you and I do know what you are feeling!!

Bobbie

 

[AJY84]

Well, my home healthcare nurses are going to try and see if they can find me counseling to see if that helps w/ the depression. I go see the surgeon in town in a couple of days. Hopefully this wound vac can come off, and I can just be switched to wet to dry dressings.

I've been slowly adding things back into my diet. I love to eat salads, but I'm wary now of what may or may not cause a blockage. I've read that w/ mushrooms you have to chew them forever so they don't cause any problems.