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Posted 1/17/2013 3:00 PM (GMT -7)
This post comes with a TMI warning attached, if the title didn't make it plain enough.

It's my bottom. Every time I flare up it becomes oh-so-unbelievably-sore-and-painful. Not an abscess or a fistula, or anything like that: it's related to going to the toilet. The more times I go the worse it gets, until it reaches the point I dread having a BM because I know it is going to burn like hell coming out, burn like hell during wiping, no matter how gentle I try to be, and burn like hell for a while afterwards. Sometime I only pass a miniscule amount, with optional blood, but it doesn't lessen the pain. Last night I must have got out of bed 7 or 8 times to pass these stupid, painful BMs.

I'm positive this part is related to the colitis part of my Crohn's and it always seems to be the last to go. This has happened in previous flare-ups: the last one my bottom ended up feeling like it had hundreds of minute particles of glass embedded in it, literally no exaggeration. That was the single last thing to go; it was so bad I burst into tears in the hospital toilet one evening.

First time I've posted about this because, well, it's not really dinner party conversation is it? :-/ But I hate it so much and is actually quite a strong argument in favour of having an ileostomy! Anyone else get this and do you have any tips for lessening the burning pain of it? Thanks.
Posted 1/17/2013 3:39 PM (GMT -7)
I don't have colitis... Well, my stool samples say that I do; however, my colonoscopy says I do not. So, I cannot say for sure yes or no.

But, I thought I'd respond and give what has worked for me since August. If, in the morning, I feel like the day is going to be an in-and-out-in-and-out kind of day in the bathroom, I put on some A&D ointment after my shower. I try to just keep myself a little moist every day so that it helps keep friction away from bowel movements, wiping, etc. If you apply some everytime you go to the bathroom, it helps. If you can (meaning, if you aren't running), applying it just before has helped, too. A&D ointment is very gentle and does not burn. I once tried Neosporin with Pain Relief during/after my colonoscopy prep... man, oh man, I will NEVER try that EVER again. It burned worse than before I put it on and wiping it off nearly killed me.

Best of luck, NiceCupOfTea!

Jade

Posted 1/17/2013 3:42 PM (GMT -7)
You also might want to try flushable wipes with aloe vera or something like that. I'm sorry, it just sounds miserable. :(
CD 2010, Fistula, Pancreatitis, C. Diff.
Current: Remicade
Previous: Prednisone, Imuran, and Asacol

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33
Posted 1/17/2013 3:46 PM (GMT -7)
What does A&D stand for? Not sure I can get that in the UK, but I can look for something similar. Last flare up I tried Preparation H for piles, but it didn't work very well <_<. Didn't see much that wasn't for piles though... :-/

Thanks :p

Edit: Cheers, scifigal, I might try wet wipes too. I have tried wetting the toilet paper, but that doesn't help massively either... :-/
Posted 1/17/2013 3:46 PM (GMT -7)
I heard that the Tucks brand is good - I think it is that brand - whatever it was... it had witch hazel and some other soothing ingredients in them. I wish I had known this while I still had c-diff. Those would've been a life saver. I did use regular cottonelle wipes or something and found that warming them slightly helped as well.
My name is Jade and I'm 19 years old - full time student in NC. In the process of obtaining an accurate Dx. Only true 'option' left is CD. Colonoscopy in the fall revealed nothing out of the ordinary; however, stool tests revealed pseudomembranous colitis. Did have c-diff but was on vanco for 7 weeks - resolved. Jejunum CD being considered as of now.
Ashtma meds, Birth Control & VitD supplements
Posted 1/17/2013 3:48 PM (GMT -7)
A&D is just Vitamin A&D ointment. It is similar to vaseline but it is enriched with vitamins and such to help skin heal. It's used often on babies with super sensitive skin and diaper rash. It's great for a whole skew of things. I use it for moisturization for my legs on occasion, for sunburns, my bottom and a whole list of other things. It's great and inexpensive - a little bit of it goes a long way, too.
My name is Jade and I'm 19 years old - full time student in NC. In the process of obtaining an accurate Dx. Only true 'option' left is CD. Colonoscopy in the fall revealed nothing out of the ordinary; however, stool tests revealed pseudomembranous colitis. Did have c-diff but was on vanco for 7 weeks - resolved. Jejunum CD being considered as of now.
Ashtma meds, Birth Control & VitD supplements
Posted 1/17/2013 3:51 PM (GMT -7)
I don't know Tucks, so I'll assume it's not a British thing. But have heard of witch hazel. If I'm up to it I'll drive to a chemist tomorrow and look for some stuff. Hopefully I'll find a bit more than piles creams this time :-/
Posted 1/17/2013 3:52 PM (GMT -7)
Ooh, cheers for that, jk. I definitely know what vaseline is, so I'll look for a vaseline equivalent. Looking in the babies section might be a good idea actually.
Posted 1/17/2013 3:59 PM (GMT -7)
Preparation H also has some flushable wipes too. A lot of the flushable wipes are located in the toddler section (but make sure they are flushable). What you also describe could be fissures...they are little cracks in your bum (the anal and perianal area) and do indeed tend to be common and part of crohn's. My doc has given me rx medications for that (a compounded med, niphedipine/lidocaine ointment...the first part heals it, the second part helps with the pain and it's compounded in an vaseline type ointment that also helps.). As for TP, don't use it anymore on my bum...it is just too rough and hard and doesn't clean well at all. Heck my DH is a convert too(and he doesn't have crohn's)...we use the wipes.
"The earth laughs in flowers"
Posted 1/17/2013 4:28 PM (GMT -7)
Actually I'm seeing my GP on the 29th January. Bit long to wait unfortunately, but in the meantime I'll see if I can find a suitable ointment for him to prescribe. Helps knowing what the active ingredients are: thanks!

It's possible it could be fissures. The last flare up it got so ridiculously painful that that, combined with seeing tiny flecks of blood on the toilet paper after I pressed it against my skin, convinced me I had fissures. I don't have any other anal issues that I know of... :-/

I have thought of converting to wipes, but am a bit scared of how much they would cost during a flare up. Although if they kept this excruciating pain at bay, it would be worth temporary bankruptcy.

Thanks, Becoming undone.
Posted 1/17/2013 4:40 PM (GMT -7)
A and D ointment is actually 15.5% Lanolin and 53.4% Petrolatum (like Vaseline) I'm sure if you ask a pharmacist in England what they recommend for diaper rash ointment, they will find you something similar. I never have the patience or time to take a bath, but I do use the hand held part of my shower on my bum and it makes it feel better. I don't have colitis...my Crohn's is in my ileum, but when I get bad D, I get really sore too and usually start bleeding from going too much. Even the wipes can be irritating after awhile. I sometimes use just warm water on the toilet paper and then coat again with the diaper rash stuff. Did you hear about a surgery date yet?
54 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have GERD and IBS, gastroparesis (Dx. with c.difficile 1/12- now resolved)

MEDS: Pentasa- 6 500mg pills per day, Dexilant, Domperidone, Metamucil, colace, miralax as needed, Culturelle probiotics .25 xanax for sleep prn
Posted 1/17/2013 4:44 PM (GMT -7)
Definitely find an equivalent to Vitamin A&D Ointment if you can. It is often in baby sections in drug stores and other stores (like Wal-Mart, etc). You can also find it near the first aid section I believe. Below is a link for a website for homemade baby wipes. I've heard great things about this 'recipe' and that is saves a ton of money! I don't know about in the UK, but there are brands of paper towels that are very similar to wipes in texture (VERY soft and cloth-like). This 'recipe' is popular among mom's with little babies... so, I'm assuming it's super gentle and definitely worth trying if it is recommended by mommas!

Jade
My name is Jade and I'm 19 years old - full time student in NC. In the process of obtaining an accurate Dx. Only true 'option' left is CD. Colonoscopy in the fall revealed nothing out of the ordinary; however, stool tests revealed pseudomembranous colitis. Did have c-diff but was on vanco for 7 weeks - resolved. Jejunum CD being considered as of now.
Ashtma meds, Birth Control & VitD supplements
Posted 1/17/2013 4:46 PM (GMT -7)
During my last flare I had a perianal abscess that was very painful. Each BM was a torture chamber that felt like expelling shards of glass. I found multiple daily sitz baths helpful, sometimes adding epsom salts to the bath water. After wiping I would soak a cotton ball with witch hazel and place it between my cheeks.

After the doctor drained it she prescribed a three week course of Flagyl and it not only cured by abscess but ended my flare. I took probiotics during and after the Flagyl.
Male/61 DX IBD in Feb08. No meds, allergic to Mesalamine. Remission since Mar10. Powdered psyllium seed mixed with VSL3 is very helpful. Food journal instead of SCD or Paleo.

Lots of fruit & vegetables (but no plums or cruciferous), No Gluten, no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, few processed foods, no carrageenan.
Probiotics, fish oil, multivitamin, extra D3, K2, E complex, phos choline, magnesium, boswellia, curcumin, DGL, glutamine.
Nature created all of the locks, therefore Nature has all of the keys
Posted 1/17/2013 5:06 PM (GMT -7)
As gross as this might sound, for the times that it's really not very much, maybe using damp TP or damp paper towels, or even some wet washcloths? Like baby washcloths that are really soft? The cost would be a lot less and the water might feel good if you just dab instead of wipe. Might have to do lots of small laundry loads, though.
CD 2010, Fistula, Pancreatitis, C. Diff.
Current: Remicade
Previous: Prednisone, Imuran, and Asacol

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33
Posted 1/17/2013 5:14 PM (GMT -7)
If ever I needed confirmation I would be a complete wuss in the face of perianal disease, this is it :-/ Had a BM about 15 minutes ago and it was torture. I was crying out in pain. If my last experience is anything to go by, it will get better as the steroids kick in and I stop going so much. But right now I'm tired, strung out, and dreading another night of this.

There's nothing I can do right now, but tomorrow I will see if I can buy a suitable ointment from a chemist. I agree with gumby about wipes being irritating as well: think it's the wetness, they make it burn even worse :-/

@gumby - the surgeon's secretary should be phoning me back with a date tomorrow. Spoke to her today.

@jk - think you forgot the link <_<. I am interested in the homemade baby wipes. I don't think they'd be enough right now, but for times when I'm not having this issue but I've still gone a lot and TP is starting to feel rough on the old bum, wipes would probably be helpful then.

@BitW - I've heard of sitz baths. I suspect one would be good right now, but I know for a fact we don't have any epsom salts... :-/ Not sure what you need for one; I'll google.
Posted 1/17/2013 5:16 PM (GMT -7)
@scifigal - Your last reply wasn't there before I posted! Damp TP helps slightly, but not enough. An incredibly soft, damp cloth might be better.

I'll be hitting the baby sections of pharmacies tomorrow... >_>
Posted 1/17/2013 5:24 PM (GMT -7)
Woops! The good thing about the wipes is that you could probably add some witch hazel in there; so, they would definitely help soothe you some. I find that just having water on TP burns for me... I've heard that these wipes are very soft and gentle. You can make them as big or as small as you want.. and, it makes a TON of them for a very small amount of money. It's extremely cost effective and I'm definitely considering making them soon if this keeps up. My next GI appt isn't even until February 26th :/

http://www.whitehouseblackshutters.com/homemade-organic-baby-wipes/
My name is Jade and I'm 19 years old - full time student in NC. In the process of obtaining an accurate Dx. Only true 'option' left is CD. Colonoscopy in the fall revealed nothing out of the ordinary; however, stool tests revealed pseudomembranous colitis. Did have c-diff but was on vanco for 7 weeks - resolved. Jejunum CD being considered as of now.
Ashtma meds, Birth Control & VitD supplements
Posted 1/17/2013 5:30 PM (GMT -7)
Oh my gosh, I know how you feel.  Use a squirt bottle!  I actually was given one after I gave birth to my son (who was 10 pounds and caused 4th degree tears) to avoid wiping and let the stitches heal.  I use it now when I am in a flare and can't stand the thought of TP.  Just squirt several times and pat dry to make sure you are clean.  Then I would follow up with some form of petroleum based cream to help any fissures heal.  Good luck, I feel your pain!
Posted 1/17/2013 5:42 PM (GMT -7)
Squirt bottle: a simple yet ingenious idea :p Heck, I could use my sinus rinse bottle; it's not like I ever actually rinse my sinuses... <_<. Thanks muchly, Myrne.

jk - Cheers for the link! Had a look. It does seem pretty straightforward, might have a go at it. Will have to guess at the size of the containers, or I might be able to find a couple of plastic containers at home. Only other problem is finding coconut oil, but there is a health food shop near us.

Hope I have the energy for all this tomorrow... >_>
Posted 1/17/2013 8:15 PM (GMT -7)
One word for you, NCOT, learned after 14 years of experience: Calmoseptine. It has saved my life more times than I can count, those times when, after yet another attack of bilious diarrhea, the burning and chafing and blistering were so intense that I could barely walk. Get a tube of this stuff and use it liberally. It will provide relief, I promise.
Posted 1/17/2013 10:45 PM (GMT -7)
You've already had a whole bunch of advice (and I didn't check all the replies lol) but a nurse once told me (when I was in the UK) to use the nappy rash stuff bepanthum I have most definitely spelt that wrong but that's how it sounds lol. I was also prescribed a cream called something ridiculous like analheal or something as blunt as that anyway.
Cos obviously I can't get those out here I buy the strongest steroid anti itch creams but like I said if not strong enough you can get a prescription one. My prescription was the best I've ever had, I suffer with this frequently even when I'm not flaring

Hope u feel better
Posted 1/18/2013 3:50 AM (GMT -7)
Diaper cream, baby wipes and the Tucks are what saved me before my surgery......

It's one more awful part of this darn disease.....

Let us know if you get your surgery date.
39year old female with Crohn's disease in the large bowel, two strictures. Have only been on mesasol, asacol and pentasa. Prednisone twice and have now started Imuran (September 18, 2011). Started Humira June 2012. Stricture stretching July 25 and August 15, 2012. GI perforated my colon causing emergency surgery and permanent ileostomy. Working on acceptance....
Posted 1/18/2013 4:05 AM (GMT -7)
Hi ncot, i have the burning and bleeding issue too when my flares are bad and i use my daughters nappy rash cream, it's called Metanium. I'm in the uk too and you can get it from any pharmacy or tesco etc. Don't use too much, a little goes a long way so the tube lasts quite a while too. Good luck x
Posted 1/18/2013 5:44 AM (GMT -7)
Hey NCOT...this burning issue is my major complaint.  Will tell you the things I have found if they help...some already suggested.

Get a hand held shower sprayer (like the squirt bottle theory only more relaxing!).  I use it whenever it is possible to jump in the shower right after going.  I wipe as little as possible--even baby wipes were to rough on my tushy when I was where you are in pain.

I tried vasoline, all sorts of diaper rash ointments, Calmoseptine, olive oil, salts and Neosporin.  The vasoline, Calmoseptine and diaper ointments were helpful, but they clung to my skin and held on to some yucky stuff---then I had to wipe more and boom more pain---now you want to talk TMI!  The neosporin had a pain relief ointment that was a god send at times.  My most recent colo-rectal guy told me to get an over the counter Cortizone cream.  I found one with aloe so I tried it----loving it and it doesn't linger on the skin.

Get a sitz bath!  Assuming they have those in England too.  plastic tub that fits over the potty and has what looks like an IV bag to add warm water to it.  I would soak as long as I could and it relieved both the burning and the muscle strain.

Try a saline solution for contact wearers on the tushy.  It seemed to help a lot.  I would put it on the TP if I had to wipe and it stopped some of the hurt better than using baby wipes.  I have also squirted it on the area and found it soothing.

Hope you have some relief.

 

Posted 1/18/2013 2:28 PM (GMT -7)
Wow, a whole bunch of new replies - thanks! :p

I didn't make it out today - well, not as far as town at any rate (walked to the doctor's and local shop with my mum: so cold). It snowed. A lot for England, so it settled and everyone was driving at 10mph. Literally no other weather conditions slows British drivers down apart from snow, then they all start crawling at 10mph. Anyway, I did not get a lot of sleep last night (not due to running to the bathroom a lot either, 'cos I didn't). I'm used to not sleeping well, but every so often it results in a day where I feel truly dreadful - and nothing will lift it except another night's sleep. Today is one of those days, so I felt basically too tired and unsafe to drive.

My bum is sore but it's not reached the point of agony yet. I've got the rinse bottle. And my mum has some Sudacrem, so I'm going to try some of that: googling it gives slightly mixed reviews, but I won't know until I try it - and it's all I've got <_<.

Calmoseptine looks good, but it's not a UK thing - a quick google shows I can order it online if need be.

Bepanthum = bepanthen. Close enough :p Anyway, it's a nappy rash ointment. Got no perfumes, antiseptics, etc., so may be good from the purity point of view...

I can try Metanium too. >_>

I do like the sound of the cortizone cream as well. And the saline solution for contacts makes sense, since, as it's for eyes, that stuff would have to not sting...

So many things to try. My bottom won't know what's hit it! :p
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