I can't do this anymore

I am six months post takedown and I just can't do this anymore. I get hardly any sleep because I have to poop a lot. It takes me forever to poop because it won't come out all at once. So I often am in the bathroom for a while. I might as well live in the bathroom. My anal fissures won't go away no matter what I do. Immodium and pain meds help a little but not enough. I've tried many medications but they either didn't work or stopped working. I'm in so much pain and strain a lot but I can't have fiber. I've had to give up a lot of the foods I love. Plus I have gastroparesis so it makes it hard for me to eat now. Even water makes me have to poop. Actually every food and drink makes me have to poop.My butt is so red it's inflamed and it hurts so bad but no creams even help me anymore. It always hurts to poop because of my butt being so raw. I also get painful cramps when I have to poop. So I try to not hold my poop in for long. I also get spasms in my spincter down there. I have a hard time staying hydrated so I get dizzy often. In fact I've gotten so dizzy I almost passed out many times. I have hardly any energy and am very weak. Which makes it hard to do anything now. I am going to try to get an appointment with my GI but he's always so booked up. Which means I'd have to wait at least a month to see him. I can see a nurse practitioner in his office but she won't know me like him. I really don't want this j pouch anymore. In fact I regret ever getting the surgeries and wish I hadn't. Plus my surgeon didn't even tell me how horrible it was going to be. In fact she refuses to help me anymore but my GI and the nurse practitioner have been very helpful. My GI told me not to give up but I am not sure I can keep living like this. I have no life at all because I rarely go out. All I do is lay in bed pretending to be okay so nobody will worry about me. I tried to be strong for so long but I finally broke down and am crying now. I don't know what to do anymore because it has been horrible for a while now. It was good before but then it got bad and then good again. Now it just keeps getting worse everyday. Why do I have to keep suffering like this? 

Original Post

This sounds horrible! First, I would not wait a month to see your GI. If you can see the NP sooner, do it. One way for her to get to know you and your situation is to see her. She will relay what is going on as she works with the GI. 

It sounds like you need serious fissure treatment and what you've tried has not worked. Ask about Botox injections. Maybe you even need a temporary ileostomy so this mess can heal. Have you tried Ilex for the fissures?

I hope you get some answers soon.

Jan

I got an appointment with the nurse practitioner for Thursday. I have tried ilex but it didn't help. Plus it got stuck in my hair down there as it hurts too much to shave. I forgot how sticky ilex is so that was not fun. I had a horrible time with a temporary ileostomy. So many leaks and my skin got so excoriated then. I had to use medical adhesive to get bags to stay on at all. I also accidentally glued parts near stoma sight together. Luckily it wore off eventually. Plus I'm very sick and I don't know how my body would react to more surgery. Though I did have surgery to remove a cyst from my leg and it went fine. The best part was the Norcos helped me to sleep through the nights. I will ask about Botox injections because I need relief badly. I think I have an abscess forming in my left butt check because I felt a hard lump. I had an infected abscess in the same area over a year ago. So I'll have the nurse practitioner take a look. Thursday can't come soon enough I tell ya! I also have to have an EGD in 3 months because my GI wants to make sure he got all the polyps. Unfortunately I have fap so my colon had hundreds of polyps and my stomach does too. I also have a polyps in my rectum and had some in my small intestine. There was precancerous one in my small intestine.Which means I have an EGD every six months.On May 31st I had the most worrisome polyps removed via EGD. Which was the day after my 25th birthday. I'm just glad I have this website to come too because it's good to have others that know the struggle. Sorry I'm rambling. 

Ramble on dear! My, what a nightmare of a merry-go-round you are on! I wish I had some useful advice for you, but it seems like you are in a real bind. With the Ilex, did you put a layer of petroleum jelly on top? That's supposed to keep it from sticking to itself. I suppose you've tried the nitroglycerine and nifedipine creams?

Good luck on Thursday!

Jan

 

Hello, Erica.  This is a difficult time for you. When I had bad butt burn after reversal I bought a sitz basin (approximately $12 on Amazon or at pharmacy) that fits on the toilet. It was soothing and helped so much to heal the burning, raw skin. And the very warm water was just soothing and comforting to sit in. Try not to strain even though it's so frustrating to sit with nothing happening. Straining will make more fissures or swelling inside and make it worse. Try leaning back a little bit, as if resting on a sofa ( just don't put your full weight on the toilet tank).

I hope they will be able to give you solutions and help you.

Jan, when I put ilex cream I actually forgot to put petroleum jelly on top. I forgot because I was so tired at the time and wasn't thinking clearly. I can't remember if I've tried nitroglycerin or nifidepine cream. I do have a lot of the creams I've tried laying around. So I'd have to look and see because I'm  a so forgetful. I have tried lidocaine jelly but that didn't help. 

Tanner, I will try that irrigation idea you suggested later. I will also try that cream too because it wouldn't hurt to at least try it. Thank you for your ideas I really appreciate that.

Winterberry, I am going to buy a sitz basin bath just gotta wait until tomorrow to do that. I need to stop straining because it's making my stomach and sides hurt. I'll try leaning back to see if that helps me. 

Well, everyone sorry it took me so long to respond. My appointment with the nurse practitioner is today at 8:45am. I'm sure they'll help me because my GI is very helpful and everyone there are really nice. I have to get ready soon but I'm super tired because my j pouch woke me up many times to poop. I'm so tired I'm just gonna put a dress on because that's easier then putting multiple clothes on. Besides dresses take less time to put on well at least for me.Plus I don't feel good at all right now. I'll be back on later to let everyone know how it went. Have a good day everyone!

I will check the local pharmacy tomorrow because I have to go pay bills so I have to be out. Luckily my j pouch behaves when I'm out in public compared to when I'm at home. The nurse practitioner checked and I do have an abscess. Luckily it's small so I can take antibiotics for it. She also prescribed a new medication to help me poop less but I can't remember the name. I do know it's similar to Colestipol and starts with a w. Except my insurance wants a prior authorization so I'm gonna have to call the nurse practitioner in the morning. I also scheduled my next EGD for the end of August. I even managed to get an appointment on the 11th of July with my GI. He's going on vacation soon so the 11th is when he will be back. I need to talk to him about my nutrition because I'm lacking in nutrients. 

Been there.. lemon water twice a day..when digested it's a ph neutral...

Mi GI..i fired him..waste of time..just focus with your surgeon. 

I'm now as of the 4th of July..3 years after my takedown...still liquid for the most part..i eat whatever I want..sometimes I do pay the price..

Pumpkin bread..bamana ..NO WHITE BREADS..they destroy ya..

We live a life in the bathroom some days better than others..

 

Well friend...everyone is different and what works for some may not work for others..nobody told me for all they really know is that over time..long time it does get better...nowhere near what it was with a colon.

I live a life of basicly liquid..and every once in a while I'm surprised..in a couple of days it will be 3 years since my takedown..i manage for the most part ok...

So I just went month to month..understanding that the process is very long..and yes many days ..countless..ass burn..

Find the strongest and softest toilet paper..stay away from white bread entirely..small meals..lemon water 2 times a day..helps reduce acid..read up on ph balancing of foods..no red gatorade..but Gatorade is good ..no dairy..

Many days I said I can't do this anymore..by the way A & D ointment is the best!..all others suck!

I'm finally off ointment .

 

Hello, Erica.

While you wait for your GI to return from vacation on the 11th to talk about nutrition, try this strategy to boost your diet with proteins, fruits and vegetables.

When you go to the supermarket, shop the perimeter of the store. That is where you will find protein items such as eggs, chicken, fish, beef. Look for specials (not the items that are marked for fast sale with best-by-date for that afternoon) but look for in-store specials. The perimeter is also where you'll find fresh fruits, vegetables, milk, tofu, cheeses (look for specials). The perimeter is also the freezer section with frozen vegetables and frozen fruit that you can turn into vitamin and protein packed smoothies. Freeze some almost-ripe bananas by cutting a banana into chunks and ziplock into a Baggie. Use these frozen chunks to make your fruit/vegetable smoothie and you won't need ice cubes. Put frozen veg in a bowl, add a bit of water and microwave for 2 minutes. There's your side of vegetables for dinner!

The middle aisles of the store is where the cookies, chips, soft drinks, instant packaged foods, sugary drinks, etc., are found. Try to avoid. Buy some staples such as pastas, rice or beans for carbohydrates, a few jars of sauce (look at the label for ingredients that you recognize, not loaded with sugar or chemicals) and you can have some simple, well-rounded meals. You can stock your cupboard with nutrient dense food. Start slowly, month by month if you have to, and restock your shelves and soon you'll be rid of calorie dense foods and replaced with nutrient dense foods. You can do this.

Erica,

Your post is all too familiar. I was diagnosed with rectal cancer in Oct 2016 ( at age 29 with a 5 month old at home). Subsequently I had a total proctocolectomy Nov 29th with temporary ileostomy and j pouch creation. In February, I had the reversal and I am now 4 months post takedown. It has been the most awful experience of my life. I too had problems with the ileostomy, but it daily crosses my mind if it would be worthwhile to have a permanent ileostomy. I returned to work after 5 weeks and have been back to see the surgeon several times due to continued pain, fissures and internal hemorrhoids. I now have decided that it is futile to return because the last time I was there, I had another pouchoscopy and the skin was raw/irritated and fissure still present. The surgeons answer was this can take "years" to heal and sometimes heal and then reoccur. I wasn't told any of this before the surgery. Just that it would be back to "normal" life. Hahaha! What is that??? Botox sounded pointless because it would worsen incontinence and only relaxes the internal sphincter temporarily and then you would need continued injections to prevent fissure reoccurrence. I have used numerous creams. The ones that I have found the most helpful are calmoseptine and nitroglycerin ointment. I just tried the rectacare otc 5% lidocaine and it is amazing. I can actually fall asleep without having to go sit in a hot bath for a bit. Ps-- burns severely for a minute or so after application. I have learned to stay away from insoluble foods because they cause delayed healing of fissure and are incredibly painful. I lived on carbs for a while, but felt so horrible due to poor diet. I started taking 2 flinstone vitamins daily and a b 12 supplement and an activia. My BMs have decreased to about 12 a day (2-3) are at night. Eating earlier in the evening helps this, but is not usually possible. Dairy increases the number of stools. I find liquid stools are way less painful than even semiformed ones and I was prescribed linzess to keep stools liquid (I had to have a stricture dilated as well). Only taking half of the beads in the capsule daily does not increase the number of stools by much but really helps with the consistency and reduces straining. Could you have a stricture and this be a cause of you having to strain? Butt burn has been another severe issue. I have found that staying away from anything well seasoned, citrus or acid foods even chocolate and coffee have helped tremendously. Unfortunately, I eat nothing now that I enjoy. I completely understand how you are feeling. It is awful. I have always run... had a good day Monday and went for a run. Big mistake. Back to SEVERE pain. I pray that time will heal, but this is depressing and horrible. Hopefully something that I have tried will help you. 

Kim_A, I've never had a stricture before so I don't know if that's what's causing me to strain. How would I know if I have a stricture? When I see my GI I'll ask him about it. I always use wipes and I have a hand held shower head that I use too. 

Lablover, thank you. I love bananas so that'll make it easier for me to eat them more often. One day I'll get a bidet as right now money is tight. 

I found my bidet on Amazon for about $30. It has been well worth the money spent. I was straining and not much would come out. It was diagnosed with a rectal exam and corrected with a pouchoscopy. It was strictured at the anastomoses site where the rectum and small intestine were sutured. Good luck at the GI. Hopefully they give you the answers that you are looking for. 

Kim_a, I hope so too. At least my GI tries to help me because he's always been very helpful. I feel he really cares about his patients.

Something interesting happened to me when I was at the GI's office. The nurse practitioner told me to talk to my GI about my nutrition. The receptionists said some things that really got on my nerves. They told me to drink ensure like that's magically going to fix everything. I can't keep anything in me so ensure would come right out. Then they tried to tell me I could talk to my GI right before my EGD at the end of August. Yes because I would love to wait that long (yes that was sarcasm). I made it pretty obvious that I need to see my GI way before then. They also tried to tell me that I could talk to my GI at the follow up appointment to the EGD. That follow up appointment usually is a couple months after my EGD. Well unless there's something urgent, which means the follow up would be sooner. They also tried to tell me that my EGD is for talking about my nutrition. Nope, wrong again because EGD is to monitor my polyps and sometimes remove polyps. He always has biosposies done on the polyps and I can call his office to get the results. Well, anyways the whole time I was just thinking that it seems like they didn't want me to see me GI. I wanted to tell them to shut up and do their jobs. I bet they still have their colons.  Even if they have j pouches what works for them might not work for me 

I could get an appointment with a dietician. I just don't feel good though like always so I've been very lazy. Unfortunately my j pouch really has made me sick. I usually don't go out, but over the weekend I did with my best friend. Though I did have fun, I didn't feel very good then either. When I came home I was exhausted like I ran a big marathon  or something. How can going make feel exhausted?I also slept through all of Sunday until this morning. Is it normal to be that tired? 

EricaLeeJpoucher posted:

I will have to try that A & D ointment because it wouldn't hurt to try it. I try to be careful about what I eat and drink but occasionally I eat or drink things I know I shouldn't. I'm going to try that lemon water too. Thank you for your help.

 

I have used all creams. Anhydrous Lanolin is the best! No smell. To irrigate buy a hot water bottle. Use the small tip and superglue it to the white tubes. Cut the tube about three inches. Buy a two ounce syringe and put the tube on the tip of the syringe. Not a needle syringe but a regular one. Suck up water and push it in your pouch then pull it out or let it drain out. I have so much scar tissue and can't poop so I use this method and it works for me. Good luck to all. 

Hi!

I'm a bit late on this, so I hope your life has improved by now. First, you have every right to go back to your surgeon. She knows more about the pouch than the GI will, though the GI doc is nicer. It's her mess, and she knows it, which is why she is probably blowing you off. 

Most FAP patients do really well after j-pouch. I'm an IBD patient with one. I'm not doing well, but it was because of a terribly made pouch, not because of my eating.

Different people do well with different foods. Do what works for you, but write down what does and doesn't work, and change only one thing at a time so you know it's really helpful. 

Low fiber, high fiber... depends on the patient. I do know this--soluble fiber is always better after pouch than insoluble. This slows down the BMs and makes them easier to pass. I gave up broccoli, asparagus, cabbage, and kale, but I can still have cauliflower, potatoes, fruits, and less fibrous veggies.

I can't touch whole grain wheat for some reason, but many people can. White bread and white rice are actually what help me. Very different than what others wrote, and that's okay--the reason we aren't given much guidance is because what works for one may or may not work for another. There's no strict recipe for success; more of a formula. 

In the end, who made your pouch is the most important thing to success that I can find so far. The second thing is, what is the underlying disease... IBD patients are much worse off than FAP ones, according to doctors, because the underlying autoimmune disease keeps rearing its ugly head.

Hang in there. But don't let your surgeon off the hook--make her image you or do whatever it takes to explain what is happening. 

I had a terrible surgeon--he lied and told me he had done plenty of these. Very few people should be doing this surgery--it is rare now because of advances in medications. So the experience is concentrated in major centers.  And the best outcomes occur there. 

I wish I had known this when I had mine... but I'm paying the price. Craptastic surgeon who did not address all the complications of his poor work. Now I'm still paying the price six years later--have to have a new one done. 

Butt-burn for me happens with spicy food or excessive diarrhea. I live on lomotil and imodium, and even old school tincture of opium helps slow things down when the others are not enough. But I found avoiding spices (argh) and eating certain foods made me more functional; I have been working for the past six years, full time, as a doctor. 

Not a colorectal one, mind you!!!

My pouch failed spectacularly a year and a half ago, and I've been living with >20 bms/24 h, mostly at night (so no sleep). Same issues as you describe--can't always empty, have to go again suddenly, perianal rash and fissures. 

Calmoseptine and baby wipes have helped, but it has been miserable, no lie. I love the sitz bath idea--have to do that later. I also got some lanacane cream (lidocaine ointment), which I apply with a q tip when I get the rash, to numb it up before I use the calmo. Been thinking about a bidet, but I don't get how it dries just yet... 

One of those cheap condiment squeeze bottles (I got a six pack from Sams, but you can get them online) is a great way to have your own irrigator. I only use it externally--no need for enemas--but when too irritated even for baby wipes, that thing can squirt right in the right place to help me clean.

I have a friend who had a pouch a few years ago by a real expert, and who has no problems, takes no meds, and even had a child afterward. She is living a completely normal life. I envy her--and I'll never be her--because she went to a high volume, high quality surgeon for this. (Her father is a doc and flew her up to NYC for treatment instead of keeping her local and trusting anyone where she lived. I wish I had done that for myself, but it's hard to make good choices when you are so ill with UC that you need the surgery.)

That may be your issue as well--a good surgeon would do anything to make sure you do well afterward, not just blow you off. If she mismanaged your surgery, you are the one who suffers. Complain to the state medical board if she doesn't help you. She can't create problems and just walk away. 

I went to someone who did just that. I let him go at the time because I was so tired. I will report him to the board, though, and he will have to answer to someone for his hubris, even if it isn't me.

Now that I have a failed pouch, I found the guy with the most expertise to fix it. He has done more revisions than anyone else. He did think he could save my pouch--I was elated. 3 stages, 9 months.

Unfortunately, I am 10 days out from surgery, and it did not go well. Stage 1 was just supposed to be EUA and laparoscopic ileostomy (ugh), but he got in there and found an unholy mess, and had to open. 2 leaks, twisted pouch, so many adhesions... he can't save it.

Now my choices are permanent stoma or second pouch, which can never be as good as the first, because it has to be higher up in the intestine. 

I have so many skin problems with the stoma that it's completely disastrous to imagine a permanent stoma. But a loop isn't as good as an end stoma (the permanent kind), so one day it may be all I can get. 

Am I depressed? Hell yeah. Looking back, a failed pouch with all the diarrhea and the bum problems may have been worth living with rather than going through all this. However, I've done step one now for better or for worse. So I'm giving all 3 surgeries a try, but I'm under no illusion this time that things will be easy.

Anyway, I wish you the best of luck. I hope yours turns out better than my experience has. If you still don't improve with the means people have mentioned, and you keep getting abscesses, you could have a chronic pouch leak. If so, you need to see another surgeon--someone good this time. Hopefully your first pouch can be saved.

But--and I say this from my own sad experience--don't rely on your GI doc and nurse, just because they are nicer. This is a surgical problem. Make an appointment with your surgeon. Be firm but calm. See how she responds. The least she should do is offer you medication management, but the best is probably imaging to look for a leak (gastrografin enema or a pelvic MRI).

What we patients have to know is that once a surgeon operates on us, they 'own' us as far as any problems from that surgery. Trust me on this. If they try to disown their responsibility, you go to someone better (academic referral center) and you call a good attorney.

Best of luck!

 

Athena, I hope that your surgeon can give you a j pouch that works out for you.  If not, there are two alternatives to the end ileostomy that do not require having an external bag.  They are the K pouch and the closely related BCIR and there is a lot of information about both of them on the internet.  These internal pouches are emptied 3-5 times a day with a small plastic catheter and no stool comes in contact with your skin as can happen with an end ileostomy.  The supply cost (for catheters and stoma covers) is usually under $200 per year.  Unfortunately, these quality of life options are not known by many doctors and some may give negative or misleading opinions about them. However, both procedures have a success rate of over 90% and are very highly rated by those who have them.

Bill

Thanks, Bill! These do not get discussed often, I agree. I will ask about them if the second pouch is awful. But there is nothing so good for UC/FAP as a well done J pouch and proper anastomosis the first time, and next best is to save that initial pouch.

I used to know a guy training as a resident who had FAP and j-pouch done before going to med school, after his father died early from colon cancer. Other than being slender, he did not seem any different than the average ortho guy. I wouldn't have known if we had not been at a group dinner once, and I saw the difference in how little he ate vs his colleagues at a Brazilian buffet. He told me then, and I never thought it would be a problem to have this after seeing him. 2 years later, I was somewhere else, getting one myself, under very different circumstances. 

With a well done pouch, you really can lead a normal life. That guy is an orthopedic surgeon at a top-ranked academic center.

Here's hoping it's not too late for the rest of us to reach something better.

I happen to love the title of this thread... how many times have I said this, especially over the last two years? But life gets better,even with a badly done pouch, for a while anyway.

2 chronic leaks have created a big mess for me--hence my suggestion that problems be diagnosed and treated early--but it isn't too late for you, Erica! 

I cannot state enough that, in our fractured healthcare system, patients have to look out for ourselves.

 

 

 

 

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