Post Pregnancy Crohnie

[Mia Butta]

:depressed:

Three months ago, I gave birth to a big baby boy. That's when all my butt problems began.

It started with the hemmies. I was left with an anal skin tag I wanted removed 5 weeks postpartum. (Partly because of vanity :redface but mostly because it felt "dirty" like something foreign sticking out of my butt which prevented me from feeling neat and clean.

The tag removal let to a very painful fissure. I basically had two open wounds down there now. At my lowest point I had to make a BM in the tub. No amount of warm baths and no amount of various ointments really helped so I saw another surgeon. "Perhaps the other surgeon did a bad job", I thought.

The area was so inflamed, new surgeon had to take a look while I was under. He drained a thrombosed hemmie (which I didn't even know I had because I was in so much pain already), resurfaced the tag removal which was a swollen mess and performed a fissurectomy. He "laid the fissure open" in his words. He also did a biopsy for Crohn's Disease and it came back negative.

Anal Surgery Recovery = PAIN PAIN PAIN

"Why didn't anyone tell me that this simple 'day procedure' was sooooo painful and that it took soooo long to recover?"

Almost two months later, here I am with two open wounds that will not heal. New surgeon finally gave up on me and packed me up with copies of my records and told me to see a G.I. specialist who could further investigate for Crohn's.

So I go a G.I. specialist who looks like the character Lilith on Cheers. She takes a look at my bum and says; "Wow that is really ugly." Gee, thanks. I realize that I will never have 18-year-old "pretty porn crotch". The important thing is; CAN YOU HELP ME NOT SUFFER FROM THE HELLISH PAIN?

Dr. Lilith also remarks that I have an infection. (I suspected this, but when I brought this up to new surgeon he replied "leaking green is part of the healing process". Dr. Lilith gave me a huge prescription for Flagyl antibiotic. I take 3 pills a day for 90 days.

Flagyl is harsh. It gives me diarrhea. "Yay, not only am I pooping glass, I'm doing it more often!!) But I DO notice a significant improvement in the pain. I went from writhing torture pain to extreme discomfort. It must be working -just not fast enough...

Results came back with my colonoscopy and blood work. Biopsies from colonoscopy = negative for Crohns. Blood work = positive for Crohn's.

Since my lower intestines look good, we now have to check the upper gut. Next: X-ray of upper intestines to make sure there are no "kinks". If there are no kinks, Dr. Lilith will have me swallow a camera.

I guess we are determined to diagnose me with Crohn's. I don't care what it is. THERE MUST BE A SOLUTION to heal my ugly, suffering butt! It hurts to sit. It hurts to stand. can't go on a walk without irritating my butt hole. I have never been in so much pain with something that is seemingly not fixable!!

I am so depressed. I just want to feel normal so I can get back to work $$$ and enjoy my family.

 

[Dexky]

Mia, welcome!!! You made me smile talking about how horrible you feel so I can't wait till you feel better!! You'll have us howling!! Seriously, I hope you get the answers and treatment you need so you can enjoy that baby boy!! Is he your first?? Good luck!!

 

[rottengut91]

Oh Mia, as a fellower butt sufferer, I feel for you. My kids are 5 and 8. I'll often tell my 5 year old, "mommy doesn't feel well today", she say, "does your butt hurt mommy?" I had a fistula that formed an abscess. Ohhhhh, how painful, not to mention embarrassing. Nothing like going to the ER for a sore on your anus. Having to drop 'em and have a whole slew of people spread your cheeks to take a look, not my idea of a fun afternoon. Anyway, I have a surgery to drain the abscess, doc basically cut it open, like yours did with your fissure. Resulted in a huge whole in my butt, right next to the one God gave me. He also put in a seton to keep the tract open, so that it doesn't close on outside and form another abscess. Meanwhile, it continues to drain, pussy/poopy juice. I am so over this thing. I have had CD for 20 years now and this is my first problem with the anal area, other than hemmies, which I had since I was about 9/10. Always wanted to see about getting those removed, but the won't ever do that because of the CD.
So I hear ya sister, one problem whole in the butt is plenty, add another and I makes for a super angry chic!! I hope "Lillith" finds some answers for you. I have no experience with the camera pill. Doc won't use camera because of my prior resections, too much of chance it will get stuck. There are a few here who have had it done. Monday, I get to have a small bowel series with barium done. Oh joy. You just might get to experience this pleasure some day yourself. CD comes with lots of not to fun tests, and there are several one here whose tests have comeback negative for Crohn's, but turn out to have it anyway. Don't give up 'til you find answers. You have a prescious one to take care of. You need to be as whole as possible. Good Luck, hope to see you around.

 

[Entchen]

Hi, Mia
I wanted to WELCOME you to the forum, compliment you on your fabulous screen name, and send *hugs* and sympathy for your pain. You poor thing! I have no related experience or advice but want to wish you and Dr. Lilith the best as you try to fix things up (and maybe, but hopefully not, diagnose you with Crohn's). Take good care.

 

[juiceit]

:depressed:

Three months ago, I gave birth to a big baby boy. That's when all my butt problems began.

It started with the hemmies. I was left with an anal skin tag I wanted removed 5 weeks postpartum. (Partly because of vanity :redface but mostly because it felt "dirty" like something foreign sticking out of my butt which prevented me from feeling neat and clean.

The tag removal let to a very painful fissure. I basically had two open wounds down there now. At my lowest point I had to make a BM in the tub. No amount of warm baths and no amount of various ointments really helped so I saw another surgeon. "Perhaps the other surgeon did a bad job", I thought.

The area was so inflamed, new surgeon had to take a look while I was under. He drained a thrombosed hemmie (which I didn't even know I had because I was in so much pain already), resurfaced the tag removal which was a swollen mess and performed a fissurectomy. He "laid the fissure open" in his words. He also did a biopsy for Crohn's Disease and it came back negative.

Anal Surgery Recovery = PAIN PAIN PAIN

"Why didn't anyone tell me that this simple 'day procedure' was sooooo painful and that it took soooo long to recover?"

Almost two months later, here I am with two open wounds that will not heal. New surgeon finally gave up on me and packed me up with copies of my records and told me to see a G.I. specialist who could further investigate for Crohn's.

So I go a G.I. specialist who looks like the character Lilith on Cheers. She takes a look at my bum and says; "Wow that is really ugly." Gee, thanks. I realize that I will never have 18-year-old "pretty porn crotch". The important thing is; CAN YOU HELP ME NOT SUFFER FROM THE HELLISH PAIN?

Dr. Lilith also remarks that I have an infection. (I suspected this, but when I brought this up to new surgeon he replied "leaking green is part of the healing process". Dr. Lilith gave me a huge prescription for Flagyl antibiotic. I take 3 pills a day for 90 days.

Flagyl is harsh. It gives me diarrhea. "Yay, not only am I pooping glass, I'm doing it more often!!) But I DO notice a significant improvement in the pain. I went from writhing torture pain to extreme discomfort. It must be working -just not fast enough...

Results came back with my colonoscopy and blood work. Biopsies from colonoscopy = negative for Crohns. Blood work = positive for Crohn's.

Since my lower intestines look good, we now have to check the upper gut. Next: X-ray of upper intestines to make sure there are no "kinks". If there are no kinks, Dr. Lilith will have me swallow a camera.

I guess we are determined to diagnose me with Crohn's. I don't care what it is. THERE MUST BE A SOLUTION to heal my ugly, suffering butt! It hurts to sit. It hurts to stand. can't go on a walk without irritating my butt hole. I have never been in so much pain with something that is seemingly not fixable!!

I am so depressed. I just want to feel normal so I can get back to work $$$ and enjoy my family.

I'm so sorry to hear! The advice I can give you is don't stop questioning! Question everything and realize that 'Crohn's' isn't a thing like the flu virus that can be seen and identified. But I get the feeling you're already kind of on that thought train.

I'm curious - what in people's blood work leads to your crohn's diagnosis? There is no crohn's bug, so what are the dr's saying means you have crohn's from blood work?

Live a healthy life - diet, exercise, moderation and have fun. The rest will take care of itself.

If you're on antibiotics, make sure you're taking probiotics and cultured foods. The antibiotics are destroying your body's natural balance and killing off the bacteria that your body actually needs to survive and be healthy.

Once you start down the road of medication, be cautious.

 

[Mia Butta]

Mia, welcome!!! You made me smile talking about how horrible you feel so I can't wait till you feel better!! You'll have us howling!! Seriously, I hope you get the answers and treatment you need so you can enjoy that baby boy!! Is he your first?? Good luck!!

Dexky,

Yes, this is my first baby. I never had any butt problems prior to this birth thing.

 

[Mia Butta]

Juiceit,

I have been a vegetarian since I was 12. I've always exercised and ate well. Seriously, I eat whole grain cereal for breakfast with almond milk and berries. I eat greek yogurt...etc.. Tofu is my best friend and I do eat fish (love salmon). According to many nutritionists, I am the poster child of healthy eating. So what the..??? This is the pay off for eating well?

I've never had digestive issues. The problem appears to be only in the perrianal area. I understand that there is such a thing as perianal crohn's disease. (Though I do have LPR acid reflux. Could it be related to Crohn's?)

What the hell kind of disease is this if it cannot be identified? Why am I going through all these tests then? This is REALLY frustrating. I'm so confused.

Dr. Lilith explained that the blood test was only 80% accurate. I don't really understand, but according to Dr. Lilith, I showed something in my blood related to the antibodies (or lack thereof). I guess that would be the auto-immune part?

I can't imagine never healing from these cuts!! This must be like having AIDS or something (Which I know I don't have...) I have never suffered from an injury that did not eventually heal. Please tell me that I will eventually heal. I'm terrified of having to live in constant pain. It is debilitating.

 

[Mia Butta]

Oh Mia, as a fellower butt sufferer, I feel for you. My kids are 5 and 8. I'll often tell my 5 year old, "mommy doesn't feel well today", she say, "does your butt hurt mommy?" I had a fistula that formed an abscess. Ohhhhh, how painful, not to mention embarrassing. Nothing like going to the ER for a sore on your anus. Having to drop 'em and have a whole slew of people spread your cheeks to take a look, not my idea of a fun afternoon. Anyway, I have a surgery to drain the abscess, doc basically cut it open, like yours did with your fissure. Resulted in a huge whole in my butt, right next to the one God gave me. He also put in a seton to keep the tract open, so that it doesn't close on outside and form another abscess. Meanwhile, it continues to drain, pussy/poopy juice. I am so over this thing. I have had CD for 20 years now and this is my first problem with the anal area, other than hemmies, which I had since I was about 9/10. Always wanted to see about getting those removed, but the won't ever do that because of the CD.
So I hear ya sister, one problem whole in the butt is plenty, add another and I makes for a super angry chic!! I hope "Lillith" finds some answers for you. I have no experience with the camera pill. Doc won't use camera because of my prior resections, too much of chance it will get stuck. There are a few here who have had it done. Monday, I get to have a small bowel series with barium done. Oh joy. You just might get to experience this pleasure some day yourself. CD comes with lots of not to fun tests, and there are several one here whose tests have comeback negative for Crohn's, but turn out to have it anyway. Don't give up 'til you find answers. You have a prescious one to take care of. You need to be as whole as possible. Good Luck, hope to see you around.

Rottengut91,

My next step (next week) is the small bowl series with barium (I think). That is the X-Ray of the upper intestine -the one they cannot see with a colonoscopy, right? So, tell me how it goes on Monday.

How did you get diagnosed with CD? Do most people have diarrhea? When you think of people who have irritable bowl disease, you just figure they have the runs a lot. But I"m learning that there is much more misery to this disease (if that is what I have) than just a sensitive stomach.

Diarrhea is no fun, but I would take that ANY DAY over open wounds that do no heal. Its like have a really bad toothache in your butt. As soon as the pain starts to subside, you have to go poop again and then it starts all over. For a week there, I was pooping in the tub. I called it my "water birth". I finally graduated to running bath water while on the toilet. Now with these antibiotics, I'm trying to ween off the hot bath and just rinsing off with a shower head. Ugh...

Well, I"m glad I found this support group. Have you been on Remicade or an antibiotic for your butt wounds? Let me know what helps. Let's compare notes.

 

[DustyKat]

Hi Mia and :welcome:

So sorry to hear you are going through all this and with a baby to look after as well! Unfortunately Crohns can be difficult to diagnose, there are many here that can attest to that, as the symptoms are many and varied and can be applicable to other diseases as well. Treatment is also a little like that too, what works for one is not necessarily going to work for another whether it be medication, surgery, diet etc.

You have found a wonderful place here for support and info so please stay around and browse the forums and if you have any questions just fire away. I hope you find answers soon to your problems and the docs can give you a clear cut diagnosis. Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Hi again Mia! I saw where you asked on another thread about the size of the pill cam. Here's a link to our wiki forum that shows a pic of a pill cam beside a tablet and some other info about it....

http://www.crohnsforum.com/wiki/Capsule-endoscopy

 

[Astra]

Hi Mia
and welcome

I have no experiences of this, but I hope you can find some relief soon, it's so unfair! And a new baby to look after too!
We're all here for you, just hang on in there hun
lotsa luv
Joan xxx

 

[Lucy]

Welcome Mia. I've not had these types of problems, but I wanted to welcome you. Good luck and I hope you get the relief you need very soon. Congrats on your new baby boy.
Take care.

 

[juiceit]

Juiceit,


What the hell kind of disease is this if it cannot be identified? Why am I going through all these tests then? This is REALLY frustrating. I'm so confused.

Crohn's is a diagnosis based on a set of symptoms. None of the test isolate any Crohn's bug, they look at other symptoms.

I would say Crohn's is a modern disease like a lot of cancers, adult diabetes etc.

I believe women have issues with hemmoroids etc? (just going by what I can recall being said or having read). If it's just affecting your backside may have been brought about by trauma of some kind.

I think most Crohn's affects the small intestine and a lot if it around where the small and large join. It's a little different than the diagnosis of colitis because Crohn's diagnosis can come form anything from the mouth through to the anus.

Sounds like you're whole gut, in general, is ok just one hell of a pain in the ass, pun intended. They might find something in your small gut, they might not. If they do, and it's extremely isolated and doesn't seem to be related to your butt problems, it may be coincidence, or a very mild case of something that when observed with other symptoms (like anal problems) is given the name Crohn's. It may be something you could live your entire life and not know you have, like I'm sure many people do and are. Don't consider it a sentence that you will end up in bad shape, be realistic and thoughtful about what actually happens and what they say they find.

Antibiotics themselves are highly controversial, considered by many to be over prescribed though necessary sometimes, and can carry side effects, which can including throwing off your natural healthy bacterial balance.

I know from experience with anal fistual's that having antibiotics caused me extreme diarrhea, which while great the antibiotics were working, having increased watery stool and holes = bad. It's a catch 22. I would say every case is different, be conscious of the treatments you are getting and read up on them and question it all. Don't be afraid to get a second or third opinion and don't be discouraged or start to expect the worst case if a Dr. does say you have Crohn's. It's NOT something that everyone 100% has all their life.

 

[Mayflower537]

Dr. Lilith explained that the blood test was only 80% accurate. I don't really understand, but according to Dr. Lilith, I showed something in my blood related to the antibodies (or lack thereof). I guess that would be the auto-immune part?

You must have had the Prometheus IBD Serology panel? It looks for various antibodies that are supposedly present for Crohns or UC. I had this test, and I got a positive result for Crohn's, but no test ever found evidence of disease, so I am undxed. My doctor basically admitted that a lot of other docs think this test is voodoo science, but ordering this test was one of the first things he did to me. I have tried to do a lot of research on the web on this test but all I can find is a mixed bag of opinions, most of them not being overly positive of its reliability. When I asked my GI, he just said it may be that in later years, I end up developing Crohns.

I basically have periodic bowel troubles, nothing like what you are going through.

I hope you can get some concrete answers and your doc can fix your bum.

Take care,
May

 

[Mia Butta]

May,

Thanks for your post. I really have a feeling that this will happen to me. I don't expect them to find anything in the upper intestines. But I suppose I will do what is recommended anyway. It sounds like if Dr. Lillith does not find Crohn's, she is going to refer me to her surgeon friend to perform a sphinterectomy. (I don't think so. I have read bad things about that)

The more doctors I see, the more I realize (to my disappointment) that medicine is not an exact science and there is a lot of "voo dooness" out there. Much of finding a solution to a health problem is lucking up with the right doctor who goes beyond text book regimes, actually listens to you and comes up to a custom approach to heal you.

I don't feel like I've had much luck in that department. I feel like I'm being put through the meat grinder and my paper work gets stuck on someone's desk until I finally call and ask for results. Ugh

 

[dreamintwilight]

Hi Mia Butta!

What an ordeal you've had to deal with. Mixing the joyous experience of giving birth with an non-diagnosis and wounds that won't heal. That's too much! I admire the sense of humor you seem to have kept, whether you mean to or not

I don't have personal experience with perianal complications, but can't imagine it being terrible comfortable to deal with. You don't really realize how important a butt is until you can't even sit down without experiencing excruciating pain! I know that Kello82 has some experience with wounds that haven't healed properly. Hers are quite different from yours and caused for different reasons, but her experience and journey is such an eye-opener! Maybe you could at least have someone who understands your plight a little better because they've been there

My one piece of advice is regarding your upper GI exam with barium. Make sure you drink a TON of water afterwards. That stuff hardens up like a rock. I know when I finally passed it all out (little by little over 2-3 days) it was really hard and sometimes difficult to pass. Given your condition, it could be painful for you. So, drink drink drink that water!

With the blood test, the Mayo Clinic states that it is not a definitive test on its own. While they are looking for specific antibodies that indicate Crohn's, there are many people who lack the antibodies, but still have Crohn's and vice versa. I've come to learn from this forum that some people have a very difficult time reaching a diagnosis because of how varied the disease is in presenting itself. It can be microscopic for some people (thus making it difficult to find from biopsies taken during colonoscopies). Others don't experience the "typical" symptoms associated with it.

Hang in there! If you are anything like me, arming yourself with information will help you deal with all the confusion and help you feel more in "control" of your situation. I understood more about the disease and medications and could communicate with my doctors more effectively because I could ask them all sort of questions.

It sounds like Dr. Lilith made a good call on noticing the infection and promptly treating for it. Hopefully she will continue along this path with the rest of your treatment and diagnosis

 

[Fuzzy_griffon_cheeks]

Hi sweety! We're glad to have you here. ^_^ ((((hugs))))

I haven't had quite the severity of anal problems you have but I am stuck with hemorrhoids and a chronic anal fissure(s) that is very painful each time they reopen. I'm on a nightly dose of anal suppositories, Anucort. Before being blessed with the suppositories, I was in excruciating pain, crying and screaming when I'd finally give in to the need to go...my husband in the other room grief-stricken by his inability to help me. (I'd hold it as long as I could because it hurt so bad--you know, battery acid and mini cacti balls drenched over an open wound? Yeah, we'll get right on that...-__-). I'd use 2% lidocane before I went to ease the magma-like pain and then 5% afterwords. (yeah I'd have to contort to use it, got quite intimately familiar with my crotch and butt. @_@ Too close to my face, do not want! lol)

I still have the little tags of rectal flesh, now on the outside, that makes my anus look like it has a beak. This all started because I wouldn't stretch when I went poo...no. -__- No I tore instead, clearly far more convenient. Yeah, for who? /=) I dealt with that for oh I don't know how long, at least 6 months before the suppositories came into my butt's life. They're the best thing ever and even add a touch of lubrication to help the dirty presents exit the building. ^_^ The only draw back is, is having the vegetable oil base leak out if you need to pass gas. It'll get on your underwear and pants and you'll smell like ode de tiolet the out-house collection. So it helps to keep a cotton ball against your butt if you haven't absorbed all the med over night.

I don't know if it would work for you, you'd have to try it, but at least maybe request some topical lydocane if the thought of an anal steroid doesn't sit well. Crohn's and/or your dilemma are nasty affairs, so any little tip to pain-freeness I know helps. :biggrin: (((hugs)))