Hi all-
I have been on this site for sometime now and have always found it to be a great resource for J-Pouchers. My bf had his takedown 5 weeks ago. He is not doing that great. Mostly suffering from external and internal butt burn, numerous trips to the bathroom daily and nightly and severe exhaustion and fatigue. I try and encourage him to get out and take little walks everyday (which he has done maybe once or twice) and make sure he drink lots of water. I am optimisitc that there is a light at the end of the tunnel, but I am not in his shoes so I am not experiencing the pain that he is in everyday. So much pain that at times he feels it is unfair to have to suffer like this everyday and wondering how he can go on. I have read a lot on this site that what he is going through is pretty normal for awhile. I just think he sees no end in site at this point and even talks about going back to the ileostomy/bag. I bought the sitz bath for him and that helps at times, but the other night he was in such exruciating pain from the burning that he was besides himself. He doesn't eat much since he thinks food is his enemy right now. The less he eats the better. He has tried bananas and applesauce as suggested, but seems to have the opposite effect on him. Yesterday he didn't eat a think until about 7pm when he asked for a cheese sandwich. I also bought maalox to try and help with the acid, as well as benfiber (which has been suggested), but that hasn't seemed to have helped, although I don't think he has used much of either. He was taking lomitol at the beginning, but it didn't help so he has stuck with immodium and I don't even think that has done anything beneficial for him. He seems to be very down and out and as his gf it's hard to see someone in so much pain and feeling so hopeless. After his prior 2 surgeries he was back to work pretty quickly and he thought the takedown would be the easiest recovery, but as we have learned it has been the hardest with the J-Pouch having to adapt to it's new role. Anyway, I just wanted to thank everyone for their advice and if anyone out there has anymore suggestions or help I can offer him it would be appreciated. Is there anything at all to help with the extreme acid that is not only burning him externally, but internally as well. Anything that a dr. can possibly prescribe? He has signed up on this site as well, but he hasn't been up to being on the computer or talking on the phone to anyone so I try my best to help him in whatever way I can. Thanks again to all of you. Without this site J-Pouchers (and their loved ones) wouldn't have the resources this site has given them which I think has been a lifesaver in many ways. I just think those who are going through the pain and recovery process find it a bit harder to see the light at the end of the tunnel at times. Thanks again and have a great day!

Rather than bananas and applesauce, which are both high in sugar and can cause more liquidity, he needs thickening foods to help soak up all that burning bile. Our nurse recommended white rice, but pasta, bread, etc. will also work. Not eating at all often causes more bile. Is he using a good barrier cream like Calmoseptine? Nupercanal first helps the burn. For the worst cases, many people also like Ilex, which forms an impenetrable barrier. Finally, how much Imodium is he taking? I think he can take up to 8/day.

Thanks Connie - I have mentioend rice to him. I told him he needs to eat something. I just think he has no appetite or interest right now. As far as ointments/creams go, he has tried Prep H cooling gel (says that has helped a little), desitin (not too much), A&D (not too much), and I ordered the Ilex about 2 weeks ago and I think he uses that a bit but he hasn't expressed that it has made a differnce for him in any positive way. As far as Immodium I would say between 4 and 6 a day.

Almost forgot: Metemucil wafers!! Last night my 19-y-o son had a stawberry drink from Taco Bell at 11:30 p.m. I thought he was crazy and would really suffer, but he ate some Metamucil wafers before bed and seemed to do fine. (He is 9 years post take-down.)

I have heard some others talking about the metamucil wafers. How does he say they taste and what are they supposed to help with?

Okay, not eating is going to make his recovery longer and harder! Trust me, he needs to eat. Eating will also help give him energy and ward off fatigue. Applesauce and bananas were my enemies too in the early days. Like Connie said, white rice (I liked the Japanese sticky variety) helped add bulk as well as chicken, bread, oatmeal, etc.

He really needs to get proactive about his recovery. I know it's hard and it can be frustrating but its not going to get better until he starts taking an interest in his recovery. If he's depressed there is treatment for that. Many of us suffered with PTSD or depression following surgery. It's not that uncommon.

Metamucil wafers help to bulk stool and bind the enzymes that are causing the burning.

Sue

It's sooooo tough the first couple months. I wondered myself while looking down at the staples on my stomach and wearing "Depends" if I had made the right decision. I was feeling EXACTLY the same as your boyfriend. I even considered going back to the illiostomy. Now, I have no regrets.

In regards to his recovery...Encourage him to get out and about. I used to go for 5 minutes walks with my trusty "Depends" on and would go 10 minutes the next time until I was walking 30 minutes a time. The cocktail that worked for me was Immodium, and Metamucil Wafers with every meal. I sometimes take Pepto Bismol if I'm feel really bad.

His body is adjusting to the new plumbing and reassure him that THIS will be the toughest time he'll have.

Good Luck.

I'm a metamucil wafer devotee. It bulks and reduces butt burn. Yep, white rice is the best for butt burn. Bagels are also great.

And as everyone has said, not eating is probably exacerbating the butt burning problem.

Since he had the surgery 5 weeks ago and he's tried so many things it seems that he may not be giving each thing a chance to work. He needs to be consistent with each med/food/product that he tries and give it a couple of days before throwing in the towel.

One thing that he should avoid for the time being is taking NSAIDs for pain. It's been found that taking NSAIDs early on after j-pouch surgery can lead to greater chance of pouchitis.

If he's not doing it now, he should give the Ilex another shot and use it more diligently. He can also put a bit a tiny little way up the anal canal. Nupercainal over the top (instead of Vaseline) can also cut the pain.

As Sue said, PTSD can also be adding to his discomfort cocktail. He should talk to his doctor about talk therapy and/or antidepressants.

I [seem] to remember those first weeks after surgery when it felt like there were fire ants clothed in barbed wire and doused in gasoline-laced battery acid crawling up my butt and dancing around. It's miserable. But the fire ants do eventually leave to go take up residence somewhere else.

kathy

This is not what he wants to hear but it takes time to heal. I also had a very tough time for about three months. THen a change 6 months and another at 10 months. I am almost at a year now and knock on wood feeling great. I agree with previous post getting out an walking does help! Everybody has different recovery rates and it sounds like his is just going to be a little longer. And it does take time to adjust to the new plumbing. I don't use anything now but a squirt bottle for after bathroom use. So mabey he can read these post and know he is not alone at all. We all understand and have been there.

Thanks so much for the valuable input you have all provided so far. I will certainly relay this information to him tonight. I had bought him some multi-symptom immodium that was supposed to help with gas-pressure-and bloating as well, but he tells me it smells and tastes very weird so he's not a fan of taking that. I thought the multi symptom one would be more helpful. Oh well. Guess I will have to buy more of the regular kind since he didn't like the EZ chews either. They coats his tongue terribly. If it's not one thing, its another! I mentioned the perineal bottle to him, but he feels the sitz bath will suffice. I have told him things are trial and error and he has to try so many different things to see what works best for him. I think right now he is just having a really, really bad week and is very down and out. He looks at sleeping as his only way to get away from the pain. I hope he will take all of your advice. I think not working, lying around all day and being so fatigued is taking a toll on not only his physical, but mental well-being, but it sounds like you have all been there. As they say "this too shall pass". It's hard to be patient when you have been suffering so long already and just want to get your life back again. I am not in his shoes, but have witnessed most of his pain/experiences and I have to say it certainly isn't easy. There are many diseases/illnesses out there, but this is quite a struggle for sure. Thanks again for all your support and sharing your advice!! It is very much appreciated!

I had a hard time with Ilex at first, especially after surgery when I was in pain (very sticky stuff). Calmoseptine was much easier to apply, reduced the pain on contact, and provided at least some protection against future burn. CVS/Walgreens often have it behind the counter.

Hi MBD, and welcome to this site! I truly hope that the corner your bf needs to turn is close.

My hubby had his surgery just over a year ago. He was miserable after he got home - butt burn, etc. He was in such pain and misery, he too almost wished he was back on the bag. Nothing we used ointment-wise was working. However, I had read (somewhere on here, I think) that Milk of Magnesia (or other antacids) dabbed directly but gently on the burned anal area by cotton ball really helped to soothe (it is not a cure, but it really helped him to feel a little more comfortable). At least it eased it enough that if we wanted to put on an ointment, you could get close enough without really hurting him. It cuts the acid on the skin....perhaps it could help a little.

His butt burn was not getting better though, and after a very rough Christmas and New Years, we popped into emerg again and it turned out that he had pouchitis. Once he started on the meds for that, he started to feel really terrific, and hasn't looked back since. I don't know if the drs have had a look-see with your bf, but perhaps there is something else going on that is delaying his complete recovery.

Good luck to you both, and keep us informed.
M.

I had my takedown in Aug 09 and then obstruction from scar tissue and surgery for that in Nov. I am feeling exactly same as your BF. I've been home from work since April of 09 and it's taking it's toll mentally and physically. Just like him, I have severe butt burn and now fissure. It is so painful to have BM that I cry everytime I go. It even hurts when I am laying down. I've been through so many barrier creams and all and nothing has worked. Went to Dr. past monday and he gave me something called SensiCare. I really hope it works because if it doesn't, I really don't know what to do.

At this point, I am even thinking of going for 2nd opinion. I am desparate to feel some kind of relief.

I am right ahead of your boyfriend. I will be two months out on the 6th. I also went thru depression up until 2 weeks ago and everything just changed for me. I am not tired all the time any longer. For the butt burn I had to get my dr to give me anusol hc 2.5%. The desitin and butt paste seemed to burn worse. You can only use it till you clear it up cause it does cause thinning of the skin. It clears it up in a few days though. The lomotil worked for me it actually worked wonders and I wish I would've started it sooner. It cleared up alot of the gas and churning of my stomach and slowed my bms. I also have a bad habit that kills me. I have one cup of coffee a day. I pay for that coffee but I can't give it up.I sure hope your boyfriends changing moment comes soon like mine did. It was amazing just one day made all the difference. Best wishes!

Tell your bf that things will improve. It took me a full year after my take down before i put a few good days together. Now 14 months after take down i'll a few good weeks then a few bad days. Mine dr. continues to work with me on a weekly basis. Not sure why i've struggled so much but it has been a battle. I am currently taking the following drugs and seem to be doing pretty good this week.
Lomotil 8x
bentyl 4x
tincure of opium 4x
prednisone 5 mg 1x
lortab 4x
levaquin 1x.
Another thing that you may want to consider is anti fungal oitment.The regular ointments that worked for everyone else never helped me with butt burn either. The barrier that i use now and actually helps me is made by coloplast and is called Critic-Aid Clear AF Clear Moisture Barrier With Antifungal. I buy it online for about $13 for a 6 oz tube. Good Luck and it really will get better with time.