Hello, so glad to find a group that could possibly help me.  A little history of my issues.  I had UC for approx 20 yrs, flares were getting worse, then random samples of dysplasia  was discovered and since my mom had colon cancer, I opted to have restorative proctocolectomy with an ileal pouch–anal anastomossis.  Surgery was done December '16.  I had major complications, such as illostomy didn't work, placement was wrong and appliance wouldn't stay without leaking, was flat on my back for six weeks ended up with a major burn wound due to biles.  It was a nightmare.  After take down, had the normal issues ended up on 8 Lomotil and 8 Imodium, had burning, itching, pain.  Long story short, the first surgeon didn't take enough of the rectum out and I still had UC in that portion of the rectum.  Needless to say my issues got really bad and it took me finding another Surgeon who did a scope and found the colitisin the rectum.  Referred back to my new GI doctor to see if the UC would respond to biologic medications to get under control.  The markers showed the inflammation did not respond the medication so I was referred back to my new surgeon.  It was decided that she needed to go in and do a repair to the ileal pouch-anal anastomossis.   Once again I would need the temporary illostomy, OMG I didn't want to go through that again, but I had no choice.  This was done Aug of '18.   It was a little better, but the stoma kept sinking back in causing leaking etc.  anyway finally after 8 weeks, my surgeon was ready to reverse the illostomy, done Oct. 25, '18.  So here we are five months later and I am in distress and need help.  Again after the surgery I was having issues, ended up on lomotil and immodium 8 each daily, questron powder for biles, fiber therapy.  After pain getting so bad reached out to my surgeon and she did a scope to see if pouchitis and in the mean time started me on Cipro.  My body didn't respond to the Cipro, so after scope they found I had excessive fecal matter in the pouch.  Taking the lomotil and immodium really slowed my system and I got backed up.  Back to my GI doctor, he told me he wants me off all the medication and my body should get back to my new "normal"  I was having severe incontinence, pain, burning itching and would be in tears everyday for hours.  I was scared of his advice, we decided on a slow taper.  This would eventually get rid of feces stuck in the pouch. He did tell me I would be miserable for a couple of months.  He told me my diet has nothing to do with my issues.  It was all due to the constipation.  So feeling like maybe an end in sight and getting better, I went home hopeful.  Of course I went drastic, and cut it right in half.  At first it was ok, some irritation but I could deal.  How I could tell (the doc told me) was my BM would be loose (not watery) again as mine were semi-formed which should never be with a pouch he told me.   Well its been approx a month feeling like the fecal matter should be gone by now, not really having the formed BM's, but the past two weeks I have been in severe distress.  The pain, the burning itching is constant, and I feel like a leaky faucet, imcomplete BMs, always going and the irritation is mostly on the inside (I use Zinc 40% for breakdown of skin on outter area),  It is affecting my life, when I am having these issues I can't do anything,  and it hurts so bad I am in tears for hours.  The bam, I will have a good day, no issues what so ever but starts again the next day.  My diet is the same, watching that to see if any triggers, but not really.  I just don't know how to get the burning and itching to stop and the leaky faucet, I am going the opposite way my GI doc wants and increasing the Lomotil and immodium again to stop the leakness because it hurts bad.  I have a follow up appt in two weeks, trying to get in sooner, but waiting on cancellation.  I need advice if anyone else has gone through this and can tell me what they did.  I am so regretting having these surgeries done, it has totally taken a toll on my life the last two years.  Please if anyone can help, I would greatly appreciate it.  Sorry if I rambled on!

Original Post

Sorry for all the pain and discomfirt you've been through in the surgery. But apart from the pouch redo the symptoms you've mentioned are pretty normal for any jpoucher. First few months are very rocky. I couldnt get out of bed for few weeks. Slowly the strength came back and stool was more formed. Its been over 8 mos. now with my takedown and I have like 5-6 bms a day. Some days 2-3 and sometimes 10 times. Doesnt bother me one bit. All GIs would tell you it has nothing to do with food but its always the food for me or the extra stress/ bad sleep that hits my pouch hard. You should try pysillium husk 2tsp morn and 2 tsp evening. Also give intermittent fasting a try. I eat during 10am to 8pm . No food 3-4 hrs before bed.

Also you should stop seeing doctors too often. Things may seem very bad but they arent. Your pouch is pretty new , getting too many scopes done on it can cause further issues. As is the case with colitis there's nothing new that can be found looking into the gut. 

Eat plenty of bananas, brown breads , butter, chicken, fish , nut butters. Stay away from too much artificial sugar or sugar alltogether. Do kegels daily it'll help increasing the strength down your bottom and some mild exercising that will get the gut moving and absorption will definitely get better. These things take time so give it that. Overdosing pills can only result in more issue , a thing I learnt from my colitis fiasco.

CALLIGIRL..... is the burning sensation and pain kinda within the back passage rather than around the external skin ?

If so, although this sounds a little uncomfortable, but in such circumstances, we'll do anything to ease the discomfort; try inserting a finger wrapped within a pure non scented wet wipe until the wet wipe comes out clean, remember to always wrap a clean area of the wet wipe around your finger before each insertion.

 You may have anal fissures which can be agonising, especially during BMs.

By inserting a wet wipe in such a manner, it helps clean the area we otherwise wouldn't.

I've also found that applying ilex Protectant Paste to the inside of the anal sphincter makes all the difference.

Technically, ilex Paste is for External Use Only, which is clearly stated on the packaging, although, I've been applying it, as I've described every so often for nearly 5 years and without adverse effects.

It's possible to aquire sample sachets or a tube direct from ilex but probably quicker for yourself if you can ask your Stoma or Pouch Nurse from the Hospital that's treating you; my Stoma Nurse was still visiting for at least 8 months after my takedown.

Calligirl, I'm sorry you're having such a rough time.

Raj, a few months?  I wish it had been only a few months for me.  But you're right, this is not an overnight fix.

Calli, I was commonly on the toilet 15 times or more a day for about 9 months.  4 or 5 months in, I was seriously thinking about going back to an end ostomy.

At best, this is going to take time.  My take down was in April.  God gave me a late Christmas present the following December.  Practically overnight, my BMs cut by half.  No change in diet.  No change in meds.  It was like my J pouch had that Ah Ha! This is how I'm supposed to do this! moment.  Things just started working as they should.

At work, I ran into my surgeon a year or so later.  I told him about it, and he told me that sometimes it just takes time for the J pouch to "Wake up".  His words, not mine.

Diet plays a very important role for me.  I was up two or three times last night because of what I ate for dinner.  Keep a food diary and see what works for you.  There is a price to be paid if I eat meatloaf and au gratin potatoes.  I just keep refining my diet.  Maybe meatloaf and mashed potatoes will work?

Strange is on target too about cleanliness.  I learned that lesson long before the J pouch.  I used to sit in an ambulance for 11 hours of my 12 hour shift.  I had to keep wipes with me everyday.

There are digestive enzymes at work all through the intestinal track.  They are still present and active in stool coming out of a healthy colon.  That's why babies get diaper rash.  The enzymes in their poop is literally digesting the skin on their little bottom.

I used a little battery powered bidet for about a year.  It really helped keep down the irritation both from wiping and by getting rid of all the residue...

Praying you find your way to get this dialed in soon.

Hi, Caligirl. You might have a fissure inside due to your constant BMs. Fissures will feel like burning sharp razor blades trying to come out. I had them a few weeks after takedown because of frequency, and luckily have never had them since. I used a travel bidet filled with very warm tap water to rinse the area every time. . The hotter the water, whatever you can tolerate, the better, because that will encourage blood circulation to the area to help heal you inside. You can find a travel bidet for $10 or so on Amazon or at a health / medical supply store. Some people use an ordinary plastic water bottle, but it doesn't have the proper angled nozzle to really reach that small area. Or buy a sitz basin and use that with warm water once or twice a day.

Do you get enough soft protein in your diet?  Your damaged and injured tissues need protein to heal. If you like eggs, try to have one per day. I ate one egg every day after my first surgery and after takedown, and continued for many weeks. Fish is easy to digest and full of protein. I don't mean fish and chips because that is very greasy and your pouch might react in a messy way. Avoid greasy or deep fried; not good for you now. Tofu is good. If you like cheese, try hard, aged cheddar. Avoid the bright orange slices that are individually wrapped and highly processed. Anything processed will be hard on your body, loaded with chemicals. Try steamed zucchini or spinach. Soluable vegetables that are well cooked will supply good fiber to help move things along smoothly without bulking up or causing constipation. Look up soluable and insoluble food to see what is good for you at this point. Avoid raw anything for now. Food IS very important to your pouch and can determine how your BMs are formed.

Always stay hydrated. Drink clear broth for salt and electrolytes, as well as drinking water. Make your own vegetable or meat broth, or buy canned broth. Add some chicken, brown rice, and wilted spinach for a light, nutritious soup of protein, carb, and soluable fiber. 

Frequency, leakage and the resulting burning pain is "normal" for many months after takedown. I was at 8 or 10 months before I gained control over frequency and the resulting fire bum. I also was in tears, pain, fear and frustration. But now I am fine, no issues except when I overindulge and I can control that. I used Imodium for a few weeks after takedown, and stopped because I wanted to let my body find its own way if possible. It was very tough at first, lots of burning frequency, but I helped it along with food choices. Eat "clean" whenever possible. Whole, unprocessed food. Chew everything very, very well.  

Try not to allow stress or tears overwhelm you or control your whole life. Your gut does not like stress. The stress hormones you're producing are bad for your gut and pouch; it makes everything seize up, churn, and nothing can heal. A vicious cycle. Find something to take your mind off your pouch. Go when you need to go, rinse, apply ointment, then try your best to forget it. Your pouch is still new, it still thinks it's a small intestine. Your new pouch needs time and patience to learn its new life. I hope you will overcome this early stage. Best wishes to you.

 

Winterberry...thank you so much for your response.  I do have a bidet, also sitz bath.  I've started to really watch my diet to help gain control.  It's comforting to know this is "normal" and an end in sight.  I really don't care about the frequency of going....it's the pain, burning and itching when it lasts for a long time and won't let up.  It gets so bad I just want to bang my head against a wall to defer the pain or worse.  On day three of watching my diet carefully and tolerable...fingers crossed.  Thanks for sharing your advise.

Winterberry...thank you so much for your response.  I do have a bidet, also sitz bath.  I've started to really watch my diet to help gain control.  It's comforting to know this is "normal" and an end in sight.  I really don't care about the frequency of going....it's the pain, burning and itching when it lasts for a long time and won't let up.  It gets so bad I just want to bang my head against a wall to defer the pain or worse.  On day three of watching my diet carefully and tolerable...fingers crossed.  Thanks for sharing your advise.

MedicKern thanks for taking time to msg me.  So I need to wait for my pouch to "wake up" lol...I'll be praying for that.  I have a bidet that is a lifesaver and helps.  I've been really careful on my diet the last few days and is helping.  A food diary is a must.  Trying to cut all medications out so my body can run naturally.  I guess it's a process and learn as I go along.  I just hope soon I can say it was alk worth it...it's been a rough 2+years.

Caligirl, try Zincofax to heal and soothe the burning and pain. When I was checking out of hospital, my nurse handed me a jar of Zincofax. I thought that a baby cream couldn't possibly work for fiery, raw skin (but that's exactly what baby diaper rash is!).  So I used calmoseptine for a few weeks and the menthol helped cool the skin a lot, and created a barrier. But I needed to heal and close the skin, so I got the jar of Zincofax. It healed my skin within a few hours. I was amazed. If it's good enough for a wailing baby, it's good enough for a wailing poucher. Maybe it can heal your burning pain and get you past this early stage. Recently ate whole wheat pasta and paid dearly, so food does matter!

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