Extreme anal pain/chronic fatigue/need new dr.

You've got a lot going on, Chrissy. I can offer ideas on some of these things.

 

Most folks rotate antibiotics if they have to be on them long term. That only works, though, if you have a few choices that seem to work. I've been on Cipro and Flagyl for close to a year now, and they are still working quite well for me. I'm puzzled by the claim that you "can't" be on Flagyl long-term. Were you given a reason? Have you tried other antibiotics? 

 

Sometimes nifedipine is used instead of nitroglycerine cream. Perhaps that would be worth a try.

 

Have you tried a bidet? It might help with those awful fissures, if used gently.

 

Perhaps your internist (if you have one) could recommend a gastroenterologist who has a lot of experience with IBD. Perhaps someone affiliated with Henry Ford Health System...

I will add to the good advice above. About antibiotics, my GI who is at the Mayo Clinic said that we are given lower doses of antibiotics than used for other infectious problems.  He's never had a j-pouch patient or heard of any having problems with other medical antibiotic needs because of taking them constantly. I do alternate between 2 of them so that they will continue to work for that problem.  I also use VSL#3DS but there are other less expensive probiotics.

 

I used canasa suppositories daily when I have a flare but have found  that using them 2-3 times a week is usually enough to keep cuffitis away.  I too use anucort especially when it feels badly inflamed.  In those cases he's suggested I use them both, canasa at night and anucort in the morning.

 

I am sorry about your husband. I've had my j-pouch for 4 years and my husband's been considering leaving me, after 39 years of marriage.

 

If you don't have one I'd suggest you get a bidet.  It has helped me cut down the number of bathroom trips in half. When you get water up inside your pouch a little it stimulates the movement needed to empty it fully,  for me anyway.  Plus it is better for our cuffitis to not have all that waste sitting right there.  I have pouchitis too so it's better all around.

 

Please find an IBD specialist instead of a normal GI.  As my regular GI said before he referred me to my Mayo GI, I needed a specialist.  He said he treats the entire digestive tract so is a generalist as far as j-pouches go.  When the prescriptions to rid my cuffitis weren't getting the job done he didn't know direction to go.

 

Please keep us posted and good luck

 

Thanks Scott. I actually started crying when I got so many helpful replies.  This site is awesome.  I have a regular GI that looks at me like I am an alien.  I haven't found a colon rectal since the one that took care of me passed away.  I was hospitalized at St. Joes in Pontiac 3 times last year with severe anal pain and bleeding, and once for severe pouchitis, and not one doctor on staff knew what to do with me.  IV Flagyl for 3 or 4 days then sent me home.

This GI doctor stated that I would become "immune" to Flagyl if I stayed on it for a long period of time and then when the time comes that I go into the hospital with severe pouchitis again, that he's afraid the Flagyl won't work "and then what then????"  was his comment.  

My other colon rectal dr had me on cipro on and off and flagyl on and off.  It's hard to convince a new dr what you were taking without them knowing you....like I said he looks at me like I am an alien-lol.  He also told me not to bother with probiotics, because with no colon it won't help so I'm confused about the probiotics.  THanks for the name of that other cream.  I've heard of it and will ask about it since the nitro gives me severe headaches.

 

I appreciate everyone so much!  Love and respect to everyone!

Hi Jeanne,

Again, I am brought to tears by the many responses I received. I feel like FINALLY someone understands.  You mentioned the same cream as a few others, the Nifedipine.  I am going to request that.  It's funny you mention about the steroid creams, my daughter is an RN and she has been telling me that for a couple years, that steroids thing the membranes....but when I mentioned it to my GI he actually fluffed it off and once again prescribed me Corticosteroid Analpram cream which I have been using for probably 10 years.  Even my vagina walls have thinned to the point if I wipe to hard they tear...and my gynocologist said it is because the steroid cream works it way up there when I walk or move and has thinned my vaginal walls!  It's a night mare!!! 

I've definitely noticed sugar, chocolate and nuts, even caffeine in coffee does me in.  BUt I also cannot eat any fresh fruits or vegetables and I love salad, but I go to the bathroom about 15 minutes after eating any fresh fruits or vegetables and it doesn't even look like they digest....so I stick mainly to meat and a potato.

I had Canasa suppositories, but I see this last prescription he gave me was Hydrocorticoid steroid suppositories!  I want to give them back to him and ask him to pay me!!  I get so frustrated.

 

Thank you for your help.  Love and respect! Chrissy

 

Hi Chrissy.
I am happy to help anyone avoid the endless days and nights I suffered with these issues. I also had a very patient and optimistic GI who was well seasoned with jpouches so that helped. He knew how badly  I wanted to remsin continent, so he threw every trick  he had up his sleeve at me. Sadly, he recently left the practice.

I would like to add that with all your ongoing issues , it is very important you get scoped on some type of schedule. My GI has me on an annual scope regimen to be safe in the event my chronic cuffitis or history of pouchitis  turns into something more serious.

I understand the frustration with fruits and vegetables. I experience this also but keep eating them. Your GI can also prescribe lomotil which can slow down the transit time. My GI preferred immodium but it did nothing for me.  The lomotil actually let's me get four hours or so of solid  sleep before having to empty pouch. I'm very envious of any jpouchers  who sleep through the night !!! I am
up usually two times through the night and that gets really old after four years w a pouch. At least I can now fall back asleep which took a long time to get to this point.

Good luck and stay strong.  Let us know how you are doing.

Hi Jeane,

Thanks for the advice.  I'm scared, but I will try to eat a few fruits or vegetables and maybe take some Lomotil at the same time to see if this helps keep it in longer. 

 

I will be ecstatic when and if the day comes that I am not up almost every hour all night long.  I have such terrible gas all the time and I don't know what's going to come out with it so I always go to the toilet.  It's never just air and I won't take the chance ever.  I would love to sleep all night long, but have realized that I just sleep a couple hours all during the day and night to try and get some rest.

 

Hoping my quality of life improves so I can be happy again.  I'm almost 59 and can't believe my marriage is over and I'm this unhappy. I thought these were our golden years....but alas 

 

THank you for your reply.

 

Hi Chrissy,

I’m sorry to learn about all of the problems you are experiencing.  You may want to consider a visit to Cleveland Clinic with your medical records in-hand.  Although I have never been a patient there, it is my understanding that they have top rate doctors who deal with problem pouches.  As far as your husband is concerned, you are better off without him if he cannot be understanding and supportive of your medical problems.  My first wife asked me to leave the house after my reconnection surgery and hired a rogue attorney who took away my two daughters in an ugly divorce action.  Fortunately, I had a very supportive family and friends who helped me get back on my feet. Years later, I found that special woman who is also very supportive of my medical problems, when they occur.  Hang in there and you will have better times.

Bill

Chrissy-

You will get through this. Your thought of going to the Cleveland Clinic makes good sense to me. I think you need some attention from a competent gastroenterologist. Perhaps you could make an appointment with Bo Shen. Your current doc is simply wrong about VSL, and there are good medical studies (that he hasn't bothered reading) showing that it can be helpful for J-pouchers. It doesn't help everyone, but it certainly helps some. I use four packets of the double strength (DS) VSL #3 daily. Good luck!

Hi Chrissy...I just joined a few moments ago as I was reading your story I felt compelled to speak with you also.  I too know what pain you are going through.  I had my surgery a long time ago.  1989  and I just started 7 years ago having issues.  Up to then, I was great.  Could not believe the quality of life I was given.  So I can't complain I had 18 years of J Pouch Goodness!  Please try if you can to go to Cleveland Clinic.  Financially this may be diffucult but if you can see if you can get in with Dr. Bo Shen.  It will be hard to get an appt. but keep trying.  I too suffer from sever rectal pain.  At times, I just cry! I am allergic to so many ointments that supposedly help others because of the zinc oxide so I am left to using an enormous amts. of vaseline just to try and coat the rectum.  I have used all the products too that you use with no help.  I just had botox injection with Dr. Ashburn at CCF but this time it didnt work.  3 years ago it did.  You may want to try and ask for botox if you truly have fissures which it sure sounds like you do.  I describe it the same way as chards of glass going through me.  I can't afford a bidet but a did buy a sitz bath that fits over the toilet rim and that does bring a bit of comfort to me instead of filling up a bathtub.  I am so sorry we have to endure this when after so many yrs. with endured u.c.  But please know that somehow you will get through this.  Prayers for you and keep posting.

It's true that fancy bidets with bells and whistles are quite expensive, but there are also "no frills" models that cost very little.

I recently ordered a cheap bidet from Amazon for $40 and was impressed how well it works.  You don't need an electrical outlet so the water is tap cold - which is ice water during these winter months.  I was having so many problems I was afraid to stay overnight away from home and my wonderful bidet so ordered this.  It works better than the hand held sprayer I used for 3 years and costs around the same amount.  

 

A good doctor knows when to refer their patient or to at least contact one that is more qualified to consult with.  He is really putting the "practice" in his medical care of you.

Google VSL#3 and you will find a study that including Dr. Bo Shen as one of the doctors doing it.  My Mayo GI doubled my dose of VSL#3DS to 2 sachets per day. My stools were better formed immediately.  I have not taken any Loperamide, prescription Imodium, since.    

 

I found a way to incorporate fruits and veggies into my diet by making fruit/veggie protein smoothies made with PlantFusion protein powder.

 

As for the V issue, I don't know if this pertains to you or not. I am postmenopausal and my Internist prescribed a cream that really works. Your issue might not be j-pouch related.

 

I'm a Mayo patient now. The local surgeon that did my surgeries trained at the Cleveland Clinic. There are also good GI specialists at state and other universities.  Mayo in Rochester, MN is 3.5 hours away so that's why my GI referred me there.  

 

I've recently been having problems and after 3 weeks on antibiotics things were getting worse.  I wasn't eating anything that had a consistency greater than yogurt. I emailed my Mayo GI and requested an appointment for around a week later. Not only did I have an appointment but my GI had a pouchoscopy scheduled exactly one week from the day I emailed him.  He also instructed the GI performing it to be prepared to do a balloon dilation. That is what the main problem was. The short side of the "J" needed dilating.  He basically diagnosed my problem from a one paragraph email of mine.

 

I don't know if you need to see a specific doctor as much as you need to see an IBD specialist. I bet your problem(s) are not going to be as hard to treat as your current doctor thinks.  Either Mayo's or CC would be great. I happen to live closer to Rochester.

 

That is another thing that bugs me about your doctor.  You asked for canasa and he gave you anucort which is a steroid!!!  You don't need to be controlled like that. Once you figure out what is helping you a specialist doesn't need to be contacted all the time. I've found that my doctors in several specialities don't usually want to be contacted by us every time I need a medication.  That doesn't mean that we don't see them periodically, just that we don't need to be finely controlled.  It's not like they are giving us an unended drug supply of xanex etc. I've yet to hear of a Canasa junkie.

 

I hope that you find ways to feel better soon. 

 

Hi TE Marie,

 

Yes, I am also postmenopausal.  I would like to know what cream your Internist prescribed that really works, if you wouldn't mind sharing.  All the steroid creams have not only made the anal area very thin but the vagainal walls very thin as well and they rip like tissue paper so sex to me is out of the question right now (no wonder my husband left me  

But I sure would like to know what cream your internist prescribed that helped.  I have been prescribed about 7 different creams for the anal area and everyone of them start out with Hydrocordisone steroid either 1% or 2.5%.  I would love to get away from the steroids.

Will await your response eagerly.  Thank you! 

Try calmoseptine cream. I was dying w cuts that my new GI indicated were more related to excessive toilet paper use versus fissures. This has helped me immensely and it is soothing. You can get it at Walgreens pharmacy or order it online. It has menthol and zinc oxide in it. Best protectorant I have used so far and have tried several. The sitz baths do help also.

Calmoseptine is what I use externally.  Internal Vag cream is to keep the walls from thinning and helps so that sex doesn't cause pain.  My prescription is Estrace Cream (estradiol vaginal cream, USP, 0.001%). It comes with an applicator that sort of resembles a tampon.  After the initial 2 weeks of using it daily I'm to use it twice a week.  I forget to use it and after a while I'm scolding myself.  Not because of the sex problem but because it improves the way I feel.

 

Please don't think less of yourself for not being to handle sex after the surgeries.  I had the same problem.  It's unfair to bail out on someone after they become ill or disabled. I've seen it many times and wonder what they thought  the "in sickness and in health until death do us part" part of the marriage ceremony meant. All of my health problems have caused strains in my marriage too.

 

My husband recently had his prostate removed because he had cancer.  Now that he's dealing with bladder control etc. he is more understanding of my problems.  Not just sex wise but similar problems. Issues of knowing where the restrooms are, taking supplies with for just in case and  wondering what and how much food and drink to have before leaving the house.  He's control is getting better as time progresses.  Just as mine did after take down surgery. I'm using the cream for myself and the dryness issue.

Take care 

I just had my surgery a month ago and am having some struggles of my own but I just wanted to respond because your story made me cry.  You sound like a very brave and strong person and I can't believe how much you have survived.  I hope you find love, comfort and support in your coming days.  Your husband clearly didn't deserve you.  Sending a big hug. 

I need to say that I'm crying with everyone as well.  Chrissy, you are a remarkable women.  you have been through so much, in fact, everyone of the people on this have been through way more than any deserves.  I am amazed at the strength and determination each one of you have.  All of you are so brave and far stronger than you realize.  Chrissy, things will get better.  You have to believe that.  Your husband has to be a complete selfish .......  I strongly believe in Karma.  When you are feeling a little bit better, try yoga and meditation.  While I'm not the patient, im the mom but I have found that it helps with the stress.  And by dealing with some of the stress, it may help you heal.  Stay strong, you deserve much more than you have been handed.

 

What a idiot your husband is.  I am the 'well' one in our marriage.  I wouldn't have thought of leaving my husband even at the worst times.  'Sickness and in Health.' I am sorry about what you are going through.  Cyber hugs.  Hang in there..