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

 

Had my pouch for 33 years. Problems all the time. To help poop  I made a irrigation tool out of a two ounce syringe. It helps to go poop so much better. For butt burn I us anhydrous lanolin. Works the best. Good luck. Hope my ideas help. T. 

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 bought my sitz bath at the local pharmacy for about 10.00.  It is a local Mom and Pop store.  They probably have them at a medical supply store also.

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..

 

My surgeon refuses to help me and told me to go see my GI for help. My surgeon didn't even bother to tell me how it'd be so much different with a colon. It's like I was supposed to find out myself. 

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 .

 

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.

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.

Thank you Winterberry for your response. I really appreciate any help I get though. I am going to start eating better and it will be hard to give up certain foods though lol. 

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. 

also a bidet has been a lifesaver! I agree no toilet paper. I keep a package of flushable wipes with me at all times. 

That just STINKS that your surgeon won't see you. Sending good thoughts to you. My husband uses a bidet too. SOFT toilet paper (Charmin!)  and eat bananas.  Sending cyberhugs to 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. 

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