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I am a UC Survivor...new to the this forum..(I don't know why I never thought to look online for help from people who are experiencing what I'm going through).

I'vehad my J pouch since 2003 and within the last year have had increased itching all around the anus, which increases after a BM.

It almostfeels like it's nerves tingling and the itching sensation is extreme.  I  have tried SO  many creams and Lidocaine, Vaginal creams, which just numbs it doesn't take away the itching really... It only helps with the irritated skin from scratching. Ugh!

Does anybody else have this kind of problem and if so what do you suggest? Barriers really seem to be a joke because I still go to the bathroom five to seven times a day.  Of course the stool is loose so I take Metamucil twice a day to bulk things up but the constant bm's is a source for pain and depression.

My doctor just prescribed UCERIS (a foam) which is crazy expensive it began off at $1,600 for 2 weeks....which my insurance does not cover.

After a week of trying to find something less expensive they gave me a coupon which brought it down to $25!!!!  it's been prescribed because he thinks I have pouchitis.

I am so tired of it... I just want to feel  normal again...any suggestions for the intense itching and how to make the bile causing my bottom to hurt so bad CALM DOWN???

 

Thank you in advance,

Cindy

 

 

 

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Must people have experienced butt burn or itching at times, but seemingly not like you are.  Assume the itch it caused by output, could be diet related?

 

Specifically some people get irritated by different by different fibre.  Perhaps switch the Metamucil for a different type?  Are you taking enough water with it? If not it can be like passing sawdust which might annoy.  The irritation could be chemical (IE from acid or enzyme.).. Perhaps you have slight leakage or perhaps you are super acidic etc.  Do you take probiotics?

 

I hate to jump on the band wagon, but calmoseptine cream is very good for satisfying the itch and offering Mideast barrier protection. It really is significantly better than others I have tried.

Bobish posted:

Must people have experienced butt burn or itching at times, but seemingly not like you are.  Assume the itch it caused by output, could be diet related?

 

Specifically some people get irritated by different by different fibre.  Perhaps switch the Metamucil for a different type?  Are you taking enough water with it? If not it can be like passing sawdust which might annoy.  The irritation could be chemical (IE from acid or enzyme.).. Perhaps you have slight leakage or perhaps you are super acidic etc.  Do you take probiotics?

 

I hate to jump on the band wagon, but calmoseptine cream is very good for satisfying the itch and offering Mideast barrier protection. It really is significantly better than others I have tried.

Thank you for your response... I really appreciate it having somebody reply so fast.

do drink plenty of water and I watch what I eat, I know the things that trigger a flare up.  I think the main problem for me is just the amount of times I have bm's, so with the pressure of sitting on the toilet and the leakage all around it's just a constant irritation. 

I took probiotics for 4 months consistently but stopped bc I really didn't see any difference except how much I was spending sadly.   :0(

The thing that bothers me probably the most is the nerves it's that tingling feeling and it just feels like it travels alot of paths (hard to describe this feeling) ...  it really gets active after a BM, does taper off but while it's in full force it's almost unbearable.

 It's like I really don't want to live my life like this any longer if it's going to be like that all the time.

I ordered some Calmoseptine tonight. What is Mideast Barrier? 

Again, thank you. It's good to talk to someone who "gets" it.

 

 

 

Sorry that was a typo.. not sure why auto correct would change 'modest' to 'mideast' lol

 

Maybe try changing your fibre?  Benefiber clear?  Psyllium husk? Some people do better on some fibres than others.  Same could potentially go for probiotics, which brand did you use?  Vsl is pretty much the benchmark for us, I'm doing good with symprove though. Some others have mentioned Align but I don't know much about that.

 

Also don't know if you've seen Nicki's thread which is also ongoing at the moment.  But basically she has had good success with Apple Cider vinegar.  Thats something cheap and easy that might be worth trying.  Get a good quality one though with 'the mother' in it (Bragg's is the biggest brand I know, but Amazon might have other brands too)

 

 Calmoseptine feels weird when you first use it, especially if sensitive already.  Use in small amount to start and go with it. Hopefully it will help.

When I get insatiable itching I can't stand it and I'd rather be in pain that have insatiable itching inside my anus. I use Zantac twice a day and when the itching occurs I soak in the bathtub. If that's unavailable I end up taking a brain altering medication like ozycodone, hydrocodone,  Percocet, or Benadryl (just a really small dose needed of the narcotics to edge of the itch). If drugs and tub aren't available or while waiting for them to kick in I apply pressure to the area with my hand while laying on my back....I've fallen asleep at night with my hand under my bottom before Bc the itching was so insatiable if I wasn't applying pressure. Hope this helps. 

Hello, CindyC.

After my reversal when the itching was intense, my home care nurse told me to use a sitz basin with very, very warm water and sit in it for as long as I could or until the water cooled. I got mine on Amazon. The warm water helps bring blood flow to the area and heal the tissues inside (and outside). Then I applied Zincofax, a simple diaper rash cream used on babies. The hospital gave me a jar of Zincofax when I was discharged and I used it when Calmoseptine was giving me a stinging sensation from the menthol.  Calmoseptine is great for cooling, but the menthol can be strong on some bums.  If the Calmoseptine doesn't work for you or is too tingly, try plain old Zincofax in the baby section of any drugstore. Also a travel bidet squeeze bottle or an attachment piece for your toilet for cleaning and rinsing the area after every BM will help calm and soothe, and remove residue that causes more itching. I hope you find relief.

I find the itch can be the toilet paper that I'm using. (you don't realize the lint that gets in there when you wipe so many times a day) or the wipes, if you use those. Also, my greatest itch comes when I'm leaking a bit or have to go to the bathroom. For me, non of the creams worked, so I use a glob of Vaseline .
Hope you find some relief soon.
Michelle

This has been an issue for me too ever since takedown 7 years ago.  Here is how I manage it.  I use Calmoseptine after every BM.  I have tried all fibers and the one that works best for me is Heather's Tummy Fiber (1 teaspoon in the morning.).  At times I use Recticare cream (Amazon) which is a strong lidocaine type cream.  I also don't eat grains.  On occasion I do and that seems to make it worse.  If I notice the area is red and inflamed looking I use Monistat cream.

If it still isn't under control I take Cipro, usually don't need a full course.  I don't have other signs of pouchitis but the Cipro often helps which has made me wonder if the itching may be bacterial overgrowth.  BTW probiotics haven't helped me at all.  Even so I still eat raw sauerkraut for good measure.  By using these things I have it under control for the most part.  Mornings are the itchiness time of day which makes me wonder what role hormones may play in this as well.

Oh how I hate that we are dealing with this.  I really was hoping that the Cholestyram powder I was recently prescribed was going to be the final medication or anything else that I would need to take for this issue because it helped so much.. it was like night and day!!15040611557901183865061

However, I had an allergic reaction to it, my lips blistered, felt hot and very dry.   My Dr. prescribed another medication that is supposed to be comparable  but does nothing for me.

 The Calmoseptine does calm down the burning but the itching doesn't go away.

I will try your suggestions. Thank you for replying.

I appreciate your time very much.

Cindy

 

 

 

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