Ever since the first surgery, I have been really depressed. I am drained physically, mentally, emotionally. I am tired of pooping all the time and the butt burn along with the itchiness. I am tired of waking up to go to the bathroom constantly. I'm tired of all the pain and I really don't know how much more I can take. I just feel so lost now and I just want it to get better for me. I have cried so many times because of all this. I don't enjoy life anymore and I hate my life.
How long has it been since your surgery? Is this the first surgery of a 2 or 3 step?
I am so sorry, I know how horrid it is in the beginning of your first-year post op...thing are difficult, horrible, embarrassing, exhausting, uncontrollable etc.
(by the way, I have a k pouch and not a jpouch so my pouch-needs were different but the journey was the same)
You are at the beginning of a very long journey and the first-step is the hardest. You are on the uphill-curve of the journey and you cannot see the top yet...it is the sleeplessness, pain, itch and frustration that is getting you down, not to mention the PTSD post surgery, the dashed hopes that 'this surgery' would release you from all pain and anguish etc.
Eventually (I know, I hate that word) things will calm down, your body will adapt to its new plumbing and slow things down, you will sleep through the night (mostly) and finally get the rest that you deserve as well as a routine going that both you and your body will be happy with.
For now, though, there are things that you can do to help thing along the way.
Stool thickeners (fiber supplements, metamucil...) and motility slowers (lomotil) can make the trips to the bathroom less frequent, a bidet or hand held shower attachment on your shower, tub, or sink faucet can help tremendously and if you cannot use one of those just get yourself a squirt bottle, fill it with clean water, maybe some mild soap like a few drops of glycerine soap or baby shampoo, and wash down there every time instead of relying on TP...it will help with the itching and pain...there are barrier creams as well that you can use (the others here will help you with the names...I have a stoma so I got stoma burn in the beginning and used baby rash cream)...
You are probably suffering from 'situational depression' meaning that if everything was well, you would be too...So get yourself someone to talk to...a family member or friend that has a sympathetic ear, a doctor or therapist or find a group in your area (you may need to ask your doctor's secretary or nurse to help with that) or just us...We are very sympathetic and understanding...and are happy to listen.
Your diet may affect your body's way of controlling output...stick to mild foods, for now, thick and pasty stuff like rice, bagels, peanut butter etc...avoid fruit juices, sodas and carbonated water and keep a food diary...it will help you to find patterns in what you eat and how it affects your body.
Hang in there
I had my colon removal in October 2016 and the take down was December 12, 2016. It's almost been 2 months. My surgery was a 2 step surgery.
Thank you for your kind words. I'm glad I'm not alone in this because then I'd have nobody to turn to. My family and my boyfriend have been very supportive to me too. I'm glad it gets better because I have things I wanna do one day.
I had my initial surgery on Jan 03, 2013 with the take down on March 20, 2013. Initially I also had problems with always having to go. The frequency was a real problem. I got some advice and I eventually ended up using Psyllium Fiber capsules (up to 8 per day) and Loperamide caplets, 2 mg (up to 8 per day).
I have had to watch my diet as well and I have found that keeping to a low fat and low sugar intake helps a lot. Generally, things are working well for me.
I am 70 years old and retired, I play golf every opportunity I get, and have few problems since I maintain that process. If at any time however, I forget and think that I have suddenly become bullet proof and decide to eat things like hi fat snacks such as potato chips, and or binge on cookies, cake, ice cream and or pies I will suffer, and will be required to make as many as tens trips to the toilet that night, with considerable pain.
I hope some of this information helps and good luck.
This is not a journey to prove 'how strong you can be', that you are 'wonderwoman/man' or that you deserve an Olympic medal in martyrdom...
This is the time to call in all of your markers, ask for help, get your friends, family, classmates, colleagues etc involved in your recovery process.
Keep diaries of what you eat and how you are affected by it, keep your closest friends on speed dial, (the ones that you can call and cry to at 2.am are the ones that I am talking about), start trying new purréed foods like purréed green beans mixed with mashed potatoes or carrots and squash or sweet potatoes...add a tsp of butter or olive oil and you have a very satisfying, pouch friendly meal.
Steal the baby food jars from your kid, your neighbor's kid or your grand kid...do not be shy, it may help you and it is chemical, sugar and salt-free.
Learn to cook...take control of your intake and you may be able to help to control your output...now is not the time to give in and eat junk food..you need to heal and junk just won't do it.
Do not try to run before you can walk...you will fall flat on your face...be patient with yourself...buy yourself a box of 'chucks or blue pads' and put them between your mattress pad and your sheet, your sheet and you and possibly over your mattress too...sleep on them for the 1st yr...no matter what...the one time that you will have an accident is the one time that you get lazy and don't put them on the bed! (murphy's law)
Grow a thick skin...this is a very humiliating, mentally debilitating disease...you find yourself leaking, dripping, itching, spotting, staining and generally hating life if you do not. Learn to take even the worst embarrassment with a smile, a quip or a laugh...If you don't then you will hurt more than you already do...(you can do no worse than me having my bag blow up on the head of my 2yr old grandson as he ran into the house and threw himself on me...with my stepdaughter fast on his heels...My first day up and about...I wanted to die...ran up to the bathroom, got washed, hid and cried...hubby cleaned the baby up, then came up and bodily dressed me and dragged me back down telling me that if I hid then, what the hell was I going to do when I had to go back to work in front of a group of randy teens? My skin has grown very thick since then)
Keep a change of clothes in your car and a couple of plastic bags. Include shoes & socks.
Invest in good air freshener.
'plant or seed' your basic needs at your family's houses...(I keep kits under the sink at my best friend's house...makes going over an emotional vacation)
Keep a running diary of your moods...
Cut out of your life those who do not care enough to help, understand or try to help...you do not need toxic people around you now...
Thank those who know how to sit in silence and let you cry.
Cry. A lot. Cry more. Cry again. Keep crying. You have lost a major organ as well as rerouted your plumbing and changed your life as you knew it forever. (for the good or bad...Time will tell). So mourn your loss.
Then laugh. You are alive. You are healing. You are getting well. Laugh more.
Appreciate life. Stop crying and start laughing. Shi--ing your pants means that you still have pants.
Ask for a bidet for your birthday or X-mas. (that will surprise the heck out of Santa Clause, the tooth fairy and the Easter bunny)
Thank God or whoever you believe in (your surgeon?) that you are still alive.
I do every day.
First of all it's great that you have an amazing support system because that is very important throughout this process. This is a life changing event and certainly not something you want to attempt to go at alone. Although family and friends that have not been in our situation can not fully understand but empathy is appreciated. I'm just about 4 years with my pouch but I can remember back to when I initially had my surgeries and how scary it was. I wasn't scared of the pain or being in the hospital for long periods of time because obviously after 10 years of struggling with active colitis that was all just a walk in the part. I think the part that we fear is the unsurity of it all. As you can probably see from reading posts on here this isn't a surgery where anybody can say this is how things are gonna happen and this is how long it's going to take because all of our bodies react differently. I can tell you one thing it has not been a walk in the park for me. I rely heavily on my faith to get me through the tough times knowing I'm a child of God and he doesn't want his children to suffer. I pray and worship and talk to him through my hard times. So the way you are feeling is completely normal. I remember feeling exactly like you do right now about the same time. I also had a two step surgery about a month and a half apart. I can tell you the when you are at the beginning of all the madness it seems like you are living a hell on earth, it seems like you'll never get out you'll never feel better, and you start to question your decision on whether the surgery was the right decision knowing you could never go back. Unfortunately some of us have no say in the matter it just needs to be done due to our circumstances and that was my case also. I was at a high risk of colon cancer and wasn't about to go down that road. It's hard to see the sunshine when you are in the eye of the storm but it's waiting there for you trust me. Depression is going to happen at this point along with alot of other emotions that you may or may not of experienced before and they are gonna be tough to cope with. I think I went through them all: depression, anxiety, fear, pain, frustration, post traumatic stress, etc. You gotta remember this is a major surgery one of the biggest ones you can get and our colon plays a huge role on the way our body operates so it affects more than just your digestive system. Right now you probably feel like you don't have control of anything and thats completely normal because unfortunately you don;t have control of too much. Your body is making huge adjustments. You small intestine is now playing a bigger role in your digestion then what it was originally manufactured for. The butt burn was horrific and I can tell you theres not a person on this site that has had this surgery that has not had to deal with that horror. Good News though it goes away I promise. Calmoseptine saved me big time. I was stocked up with tubes. One in one bathroom one in the other one in my bedroom and one in the car. I also took many baths everyday not only to sooth my bum but it ws also one of the few times during that period that i wasn't in pain. It's a temporary relief but it was needed to get through the hard days. Theres nothing wrong with breaking down and crying. I did and it was a neccessary release. Im a researcher but no matter how much knowledge I had before going into it and no matter how many conversations i had with my surgeon and no matter how many stories I read on this site nothing can really compare you for what's to come. One thing I can tell you is if you are taking pain medication just be extremely careful because I got to the point I felt like I was so hopeless with what was going on that I didn't think I could live a normal life without them and ended up with a pretty serious opiate addiction that landed me i a rehab facility. I know you are struggling now but in due time things will get easier. I've experienced many horrors over the past years that I pray you don't have to experience. Just remember one persons experience is not anothers. I don't come on here that often but if you do want to talk you can PM me and I'll make sure I respond. Always here to help another fellow poucher in the midst of the struggle. God Bless You!!
I feel so lucky to have so much support on here and in person too from some awesome people. I had to remove 2 people from my life because they stole from me and my boyfriend. Plus they said there's nothing wrong with me and told my boyfriend he shouldn't take care of me. Always be careful who you trust because some people just want to hurt and use you. Anyways, thank you for letting me vent on here, it has helped me to feel better.
Erica, I am so sorry that you were taken advantage of by people you trusted when you were so vulnerable. No wonder you are depressed and hate your life!
We may not have all the answers, but at least we can empathize with your situation after j-pouch surgery. Everyone here participates only to share what we have learned. Sometimes just having a shared experience is more valuable than any specific solution. Just not being alone can be quite uplifting. Having a supportive mate, family, friends, etc. is great; but we really "know" the stuggle.
Feel free to vent as much as you need!
Thank you Jan!!
I know it's supposed to get better eventually, but that doesn't help me now. Lately, I have been in so much pain and it's just getting worse. I think I have an anal fissure because I feel like I'm being stabbed by glass in my bottom. I got an appointment with my surgeon, but not until Wednesday. I don't know if I can make it that long because the pain won't go away. Even passing gas hurts so much.I also wonder if having small formed stool can make it worse compared to liquid diarrhea.
If it feels like pieces of glass or razor blades moving around inside, it is fissures. The first time I felt that pain, I really thought I was moving shards of glass. I had no idea what fissures were. Doctors and nurses did not tell me (warn me). It felt like I was being cut inside with razor blades. What helped me was sitting in a basin of very warm water. It will bring blood flow to that area and help heal the internal and external fissures. The easiest way is to buy a a little basin called Sitz Bath. It's a small basin that fits exactly on top of your toilet with an opening at the back of the basin for water to flow out a little bit when you sit down on it. The water is so soothing. Fill it with water as warm or hot as you can tolerate. It will help ease the pain, and heal the cuts. Sitz Bath basins cost around $12 or $15 on Amazon. Comes with a plastic bag and tube so you can refill when the water cools. Read a book or tablet while soaking! I hope this helps. It's early days and it will get a little better every day.
Thank you for your suggestions Winterberry.
Yes, sitz baths are better than any pain med for fissures. Also, you do not want formed stools orwatery stools, as either one leads to straining and worsening the fissure. Fiber supplements can be helpful, as it can give some bulk to stools, but are easy to pass. Plus, they adsorb the caustic bile acids that burn.
Besides all the good advice above I'd like to add that you might need help for your depression. You probably have situational depression as Sharon described but you could have a medical reason too. Our colons helped produce the serotonin in our brains and when our colon is removed that production stops. You might need to take an antidepressant and/or go to therapy.
Good for you in getting rid of the 2 people that were dragging you both down. I had to dump several friends as well. Life it too short to put up with people dragging you down.
Erica, I just want to add a "hang in there". Be kind and gentle with yourself. This surgery takes quite a bit of an adjustment both on your body and mind. I have been away from this forum for quite some time. Happened to see a survey email and popped in to respond. Glad I could respond to you, as well. I still remember feeling many of the same things that you expressed. Please know that many people have this surgery and after an adjustment period go on to live their life and never look back. The beginning months can be difficult. Get the help you need now whether it is seeing your surgeon and having him reassure you that you are on the path to good health once again, taking it easy for a bit of time more or any of the other suggestions above. Best to you!