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Crohn's Disease Forum » Your Story » Newb: Yo, Folkses. Gather round, for a story of crazy random happenstance! (not really)


12-13-2014, 07:11 AM   #1
Anjalena
 
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Newb: Yo, Folkses. Gather round, for a story of crazy random happenstance! (not really)

Hi all. I be new here. Looking for a place where I can *tries to get her thoughts together and figure out specifically what she wants* ... umm, find other people with severe, chronic abdominal pain and suffering, people with a lot of knowledge and empathy, an ACTIVE community where I can go when I'm in need of answers or I'm in meltdown mode (which is way too often lately), and some people who actually suffer through the symptoms and have dealt with these doctors who don't tell you everything, who take their sweet time with doing anything and don't call you back, and you have to continually kick them in the butt to get them to do anything, a place with people who have a completely different mindset and perspective (from the doctors) for me to talk to about things that have been going on. I'm not looking to get diagnosed by the community though. We can't do that. I have a couple of brain cells though I think they're starting an organization and deciding whether to flee the premises. (yeah, i'm a weirdo. I love that about me!! *grin* and i'm in humor mode. it's first thing in the morning and mornings are usually a bit better)



Strawberries are awesomeness.

Anyway, I think that's what I'm here for pretty much. As much as I talk, and I'm good at casual verbal diarrhea, words are strangely not my strong suit. Is that irony? No... I think there's another word for that. Anyhoo... okay, so, Here's the sitch.

I'm undiagnosed. (probably obvious from my first paragraph) I'd like to tell you guys my story. HOWEVER, due to the fact that I am very social (from birth, it's just innate), I have ADHD (so they say), AND I'm bipolar and in a manic phase... yeah, my posts are along the lines of The Illiad. (that's a bit over exaggerated but I'm also a drama queen. but i'm sure that was a big surprise too) I tend to get a lot of these "TL : DR" crap responses from people, if I get a reply at all. (that means Too Long, Didn't Read for those who didn't know. I usually have to look stuff like that up myself)

So, I give you guys the option of me telling my story cuz some forums don't mind long stories. Some of them do and they just will not reply. I'm not going to write it all out if nobody's going to reply. But from what I've read so far around here, you guys seem to be a very empathic and supportive bunch. That's a HUGE plus with me, since I'm an empath. =)

Anyway, I leave it to you. I'm going to enjoy my good mood while it lasts. Yesterday was absolutely horrific mood-wise.

Quick question... what's the law on expletives? I mean I'm not firing off words all the time, but once in a while, being able to say a word in frustration.... or a mild word just as a descriptor... is nice. But I'm capable of not using them too. So wanted to know the rules.

Nice to meet everyone! =)

Holly

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Last edited by Anjalena; 12-13-2014 at 07:41 AM.
12-13-2014, 07:24 AM   #2
scottsma
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Hi Holly and welcome. to the forum,

Have you had a look at our undiagnosed thread,also young adults and the vent threads.Not sure about the expletives though.Probably best to keep it low key.We all "think" the bad words but we don't want to upset people eh ? Hope you're having a "good"day today.
12-13-2014, 07:39 AM   #3
Anjalena
 
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Yep, I have that page open already. But I wanted to introduce myself here. Wasn't sure if I was supposed to tell my story here first or there?
12-13-2014, 08:25 AM   #4
dave13
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Welcome

Definitely tell us your story.Like scotsma says,leave out the 'F' bombs but be passionate.You are going through this.I am from Maine too.
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12-13-2014, 08:20 PM   #5
Anjalena
 
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I'm feeling very down tonight. Nothing like this morning. So very different style of personality here. Bipolar, hi there! I'm not used to mood swings. I usually just am full on hypomanic. Wish I could just stick with that. *sigh*

Disclaimer: I do not describe things well. I forget things so I may come back later and say "OH YEAH, I forgot... this was happening too!" or "No, that didn't quite happen like that. It was more like this." -- But I've been keeping journals and making lists of symptoms to try to keep things in order as best I can.

I have NO SHORT TERM MEMORY so if I don't write things down, it gets lost and I end up having to say "About a week and a half or two weeks ago... or so... blah blah happened", etc. And it could well be that it happened a month ago. I'm terrible with time. I do my very best but writing things down unfortunately involves remembering to write them down and you don't always have the pen and paper with you, though I keep pen and paper around me as much as poss!

Okay, I think that's good on the disclaimers..... so I'll try to write down the part of my story that I'm up for writing down tonight. I'll do my best, anyway. And be aware, I -DO NOT- believe I have Crohns. I thought possibly some type of IBD but now I don't know. But I think you guys go through something that makes what I go through look like a tummy flu. After reading some of your stories, I feel a bit guilty for coming here but I feel confident that you guys have such strength of character that you'll listen to me anyway. I admire you all greatly.

Okay, gonna go have a discussion with the porcelain idol. I shall return to begin my tale anon...
12-13-2014, 09:04 PM   #6
Anjalena
 
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I'll have to come do this later guys. Feeling a bit passy outty. Gotta go lay down...
12-13-2014, 11:32 PM   #7
afidz
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Hey Anjalena!
I am glad you found your way here, I think this is a wonderful community with so many knowledgeable people. Most of what I know about IBD, I learned here.
First thing first- you can make a post as long or as short as you want. If you don't want to type it all out at once and risk wasting time, you can break it up into different posts. But I would love to here your story and offer any advice/empathy.
As for expletives- try to avoid them. However you aren't going to get in trouble if you let it slip every once in a while. IBD is very frustrating and some times those are the only words that can be used. Just keep in mind that there are people here from all over the world, different backgrounds and what not.
Its great that you keep a journal, especially when you go to the doctor and they ask you whats been going on. What types of things are you keeping track of? A food diary is also a very useful tool.
I go though a pretty dramatic emotional roller coaster every day. Sometimes I am very excepting of the cards I have been given, other times I can't handle being me. I think its something we all go through, at least in some way. Don't feel bad about telling your story or "complaining" (no body complains on here). It is not a contest, we all struggle in different ways- we all have a right to "complain" on here.
I hope you are feeling better than you were, talk soon.
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Ankilosing Spondylitis
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12-13-2014, 11:52 PM   #8
Jennifer
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Hi Anjalena and welcome to the forum!

When you do share your story be sure to let us know your symptoms (past and current even if they aren't gut related like joint pain etc), what medications if any you've tried in the past, what tests you've had done including blood work and if you're seeing a GI or will be soon.

As for cursing, it's not against the rules but cannot be in thread titles and is best left done in the Vent Away section under Support or the Member's Only section. As mentioned be mindful that we have members from all over the world and of all ages.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
12-14-2014, 01:36 PM   #9
valleysangel92
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Hello there

Welcome to the forum, we are happy to have you.

If you want to break your story into different posts that's fine but if you want to type it in one go then that's totally fine too. Just remember to break the post into sections like you have with what you've already posted. Sometimes posts get missed or don't get many replies but that's not because of the poster. Sometimes people just aren't sure how to help.
We will always try our best to help everyone and if we can't answer your questions we will at least be able to support and empathise.

Please don't feel guilty. While this forum is predominantly for IBD we do have members with other conditions and we welcome everyone in the same way. Everyone with an illness has tough times and can feel lost. Everyone needs a helping hand sometimes and we will always try to give you that. Your suffering is just as valid as those of us with crohns /UC.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
12-16-2014, 10:06 AM   #10
Anjalena
 
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Hey all. Tis me again. Had a horrific night on Sunday night and Monday morning. I'm losing weight again. Last Wed my abdominal pain had drastically reduced and I'd even stopped taking the dicyclomine (all they'll give me for pain since they don't know what's wrong with me yet. it does take the edge off but i was still in constant pain even with it. it would bring me down from a 7 or 8 down to a 5 or 6.). But Sat morning diarrhea started up again and Sun night was just a really bad night. (course i haven't had my bowels twisted and had to have surgeries and all that stuff so it's all relative)

Anyway, I also have appointments and workers throughout the week so between that and not feeling well, it's hard to find the time and energy to sit down and do this. BUT, I have no workers or appointments today! So it's a good day to work on it. The first thing I want to do is give you guys my abdominal history. So here's that mini-novel. =)
-----------------------

I've had abdominal pain and trouble all my life. It runs on my Dad's side of the family. (i swear I've never gotten anything good from that man) I dunno our history though, as far as actual disorders and diseases, etc. I know that Dad had severe diarrhea issues so much that he had to take toilet paper with him out onto the golf course. My grandmother, his Mom, was the exact opposite. She had very severe constipation issues.

My first problems came up during my teen years when I suffered VERY severe painful trapped gas. I'd be up and down all night long, on school nights too, going to the bathroom, hoping that I could have a BM and that might relieve the pain. But nothing would ever happen except pain. I lived with that until my early to mid 20's. My son is still going through the painful trapped gas phase. He's 25 now. I hope he'll come through that soon. But thankfully he's got the benefit of something I didn't. Gas-X!

I was also VERY SEVERELY sensitive to laxatives at an early age... late teens, early to mid 20's. During my son's birth, they did an episiotomy I think it's called. So I had stitches down below. I was terrified of ripping myself if I had a BM. But there was no way in HELL I was taking Milk of Magnesia. I'll just croak first. *rofl* So I bought some of those chocolate Exlax... and I literally bit just the TIP of a corner off of it cuz I wasn't sure what effect a laxative would have. I'd never taken one. What I bit off wouldn't have amounted to 1/8th of that piece. When it kicked in, I was about 8 feet away from the toilet and I still didn't make it. I made it to in front of the toilet, but that's as far as I got. So that's how I found out I was extremely sensitive to them.

Well, when I moved up here to Maine in 1997... and I finally got a doc who decided to try to find out what my abdominal trouble was, probably around 2000... he wanted to do a barium enema. He had his nurse start giving me all these laxatives, and magnesium citrate, the works. I tried telling him AND the nurse how sensitive I was to them but they didn't listen. So I went home and did what I was told. I was SCREAMING all night long in pain!! My partner at the time called the E.R. and asked if it was normal. Poor fella was terrified. The first doctor who got on the phone said... yeah, that's normal. (???) The second doc said no. But nobody said to come in. The next morning I was so raw, I wondered if I had any skin there at all and the idea of having ANYTHING touch me there was just horrific!

Anyway, the barium enema didn't show any polyps or anything. So the doctor just diagnosed me with IBS and I've carried that diagnosis since. Mostly I just have chronic constipation but it's hard to know what my natural function is because I have Fibromyalgia, which comes with a bunch of other disorders.... which means I am on a bunch of different medications. I also took Ibuprofen 800mg for MANY years! *yikes* It took 13 yrs to get that diagnosis of Fibro so when I'd go to doctors to find out why I was in pain all the time, instead of being bothered to go through my list of problems, they'd just throw Ibuprofen 800mg at me. I was also on narcotics for about the past 7 yrs though I took them as sparingly as possible but they still make you constipated as hell. But I'm done with those now too.

But all of these medications just kill the function of your stomach. (i didn't know that til recently. funny how doctors never tell you anything except what they think it's convenient for you to know) I think my stomach has finally said... that's it. I'm done!! *laugh* I'm still on too many meds but I'm on a LOT fewer meds since I have a new primary care doctor since end of June and he's been working on lowering the number of meds I'm on. My last primary care provider just threw meds at me every time I came in. I don't know how we can feasibly get rid of any of the remaining meds though as they all seem important. I dunno.

Anyway, that's sorta my history up until October 22nd. And that's the stuff I'm working on writing about to post onto the board.

If anyone has any questions at all, feel free to ask away. I'm not the least bit modest or shy. I'll talk with anyone about anything.
12-16-2014, 10:41 AM   #11
Anjalena
 
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OH, I have a question for you guys though. My Endoscopy/Colonoscopy double-feature is on the 24th.
Oh what fun it is to ride....... *rofl*

What tips, hints, suggestions do you guys have to help me out? I mean obviously I've got the prep instructions that they gave me, but I'm betting you guys have been through these tests a bzillion times and might have some nuggets of wisdom to help me through it. If not, that's cool. Doesn't hurt to ask.

I've had an endoscopy. Easy peasy. Worst part of that was that I was slightly hoarse and couldn't sing for about 3 days afterwards! Argh!! *rofl*

The colonoscopy, I'm a bit terrified. My son had to have one when he was about 5 because he went to the toilet and ended up bleeding in the toilet. They never could get him fully sedated and he moaned and hollered out during the procedure. I was in the room with him. My friend Tina had it done and they were late with giving her the sedation so she wasn't fully sedated when they began and it was awfully painful for her. And I've spoken to at least 2 other people who have friends who've experienced pain during theirs. So I'm kinda slightly panicky. Trying mostly not to think about it because it has to be done, I -WILL- have it done no matter what because I need to get some answers as to what's going on with me, and there's nothing I can do about whether it'll hurt or not. But yeah... anyway.

Here are the Prep Instructions as sent to me on this flimsy little flyer in the mail from my doc's office. *rofl*


-------------------------------------------------------

5 DAYS PRIOR TO COLONOSCOPY, PURCHASE SUPPLIES:
- 238 gram bottle of Miralax (14 dose bottle - I can't afford to buy an extra bottle but my 30 dose bottle has way more than 14 doses in it. I'll very carefully mete out 14 doses and then weigh them on my kitchen scale)
- 4 Dulcolax (bisacodyl) 5mg tablets
- 64 oz Gatorade (no red, blue, or purple) - (vomit. i asked the doc's office if i could use something else and i can use my Kool Aid liquid drops in water. *whew!* If it's good enough for contrast material at the hospital... hey!)
- 10 oz bottle magnesium citrate

Stop taking (blah blah blah... i'm sure you guys know this list well. coumadin, warfarin, plavix, fish oil, pepto, iron, etc)


2 DAYS BEFORE COLONOSCOPY
Start Clear Liquids diet... no solid foods, clear liquids only! (no red, blue, or purple... so basically none of the good flavors! *laugh*)

5PM
Drink 10oz bottle Magnesium Citrate


DAY BEFORE COLONOSCOPY
1PM
Take 2 Dulcolax Tablets

5PM
- Mix 238 gram bottle of Miralax with 64 oz of yummy Kool Aid water. *grin*
- Divide Solution, placing half in fridge
- With the other half, drink an 8 oz glass every 10-20 minutes until gone. (if you experience nausea, take a 45 minute break, then resume drinking the prep)

** I'm afraid this is going to be awfully painful since if I drink too much too fast, it hurts like hell! That's the part of my symptoms that are ulceric in nature.


9PM
Take 2 Dulcolax tablets


9 HOURS BEFORE YOUR SCHEDULED COLONOSCOPY
- Finish drinking the Miralax Solution
- Drink an 8 oz glass every 10-20 minutes until gone. (if you experience nausea, take a 45 minute break, then resume drinking the prep -- wouldn't have time for that since I have a total of ONE hour to drink the whole thing! better hope I don't get nauseated.)


8 HOURS BEFORE YOUR SCHEDULED COLONOSCOPY
- Stop ALL liquids 8 hours before your scheduled colonoscopy time.
- Do NOT eat solid foods


** Morning meds can be taken with a TINY amount of water EXCEPT diabetic patients who will need to call their primary care provider for instructions. ---- My primary care provider said stop taking my Metformin 2 days before the colonoscopy **

------------------------------------------------------
12-16-2014, 04:36 PM   #12
Cat-a-Tonic
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There's a very informative thread about colonoscopy prep here:
http://www.crohnsforum.com/showthread.php?t=44105

I see you're doing the Gatorade & Miralax prep. I've done that one twice before. It is one of the best tasting preps (there are some foul ones out there, this one just tastes like whatever flavor of Gatorade you use). I would recommend that you do NOT use your favorite flavor of Gatorade, though. Because you will not be in any rush to ever drink Gatorade again after you've done this prep. It's just a lot of liquid to drink in a relatively short time so even though it's palatable, you won't want Gatorade again for awhile and you particularly won't want whatever flavor you used for prep.

As for recommendations - make sure you have lots of things to keep yourself comfortable. Wet flushable wipes are a must, and a booty cream such as calmoseptine helps a lot as well. Sweatpants are a good idea so that you don't have to fiddle with buttons/zippers when you rush to the bathroom each time. Last time I did prep, I sort of approached it as if it were a spa/pampering day. I lit some scented candles, had a nice soothing playlist on my ipod in the bathroom, wore my softest socks and fuzziest slippers and comfiest hoodie, etc. That helped a lot. Prep is a very uncomfortable time so make yourself as comfortable as possible.

And the other thing about prep, you're going to be in the bathroom a lot. Get yourself some options for entertainment. Have a good book, or if you have a smartphone/tablet/laptop then get a movie playing on it or some games. Whatever you can do to pass the time and distract yourself from the ickiness that is happening.

As for pain - I've had 4 scopes now, 2 upper and 2 lower all done at different times, so I've been sedated 4 times. I've never experienced any pain. I did have one very brief episode of semi-wakefulness at my last scope, but it was so brief that I only vaguely registered that I was conscious and that my butt felt uncomfortable - then I zonked back out. The sedation they give is usually quite good. I've always had versed & fentanyl, and sometimes they add Benadryl as well. If you're concerned, you can call the hospital or clinic where they do the scopes and ask the nurse questions about what sedation they use, how often people wake up, etc. I called the nurse with a zillion questions prior to my first scope, and she really put my mind at ease.

I hope that helps! Good luck on the 24th!
12-16-2014, 07:44 PM   #13
dave13
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I had no pain during my colonoscopy. I remember the nurse saying the doctor is here and she was going to increase my IV drip...and I woke up in recovery. I was also told I may have gas after and I sure did.
12-16-2014, 08:55 PM   #14
Anjalena
 
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Thanks guys! I appreciate it so much!

Yeah, not going to be drinking Gatorade at all. I can't bear the flavor of Gatorade. I have a strong sense of smell, and therefore a strong sense of taste... and Gatorades have some strange under-flavor to them that I can't take. My plan was actually to use my favorite Kool Aid flavor liquid drops. But then I remembered that my drops are the purple and red ones. (I like Grape and Tropical Punch) So can't use those. I also thought about using apple juice since that's what I usually use with typical Miralax doses. But as you said, I probably wouldn't ever want apple juice again. Hmmm. Maybe Orange flavored Kool Aid. I might be able to stomach that.

In the E.R. they brought me some strawberry kiwi mix to put in my contrast dye for a CT scan. It was pink. Now that got me thinking, you can't use blue, red, or purple for the scope. Does that include pink? I'm assuming yes since pink is light red but I figured I would ask. I'm guessing it's probably safest to stick with yellows, oranges, and greens.

Thanks for helping ease my anxiety about the pain guys. =) I'm going to go look at those links right now, Cat! Thanks for linking them.

Edit #1: -- Cat - I'm looking at Walmart.com and don't see that calmoseptine. What's the closest thing to that? Would A&D ointment be good? How about proctozone or desitin as silly as those might sound. All of those are in my Butt Bag on the counter beside the toilet. My former PCP prescribed the proctozone years ago for the fissures. It was supposed to help soothe and heal them but it never did a thing, or it never seemed to. But all 3 of those are different consistencies. Proctozone is a cream, Desitin is a zinc paste, and A&D is an ointment. But I don't know if any of those will help. If not, take a look at Walmart.com and let me know if you find something there that is comparable to calmoseptine. =)
12-17-2014, 06:08 PM   #15
Cat-a-Tonic
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I usually buy my calmoseptine on amazon, but you can also get it at Walgreen's. You'll have to ask for it though as they usually keep it behind the pharmacy counter. I'm not sure what other products are similar to it - it's a mentholated cream (this is weird to say but it feels "minty" and takes away that "ring sting" feeling), so if you can find something else with menthol then that should be similar. Here's the link to it on Walgreens' site:
http://www.walgreens.com/store/c/cal...285901-product
12-18-2014, 04:04 AM   #16
Jennifer
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You could use a diaper rash cream as well. I haven't gotten a chance to try the calmoseptine because before my last scope, for some reason it was all bought out. Who knew it was so popular? Last few times I've used diaper rash cream and it works just fine for me. Better than nothing. As mentioned wet wipes are a must. Might want to use those entirely rather than toilet paper. Toilet paper always feels like glass after a while.

One of the main things you'll want to remember about prep is that once you're running clear (your output is the same as your input, not cloudy and no bits etc), you're done. I've never had to do the morning prep during my adult life. I only did it when I was a child because my parents made me because that's what it says to do on the paper. Talk to any GI or nurse and they'll tell you that all you need to do is run clear.

I've had over 15 scopes done since I was 9 years old (32 now) and only once do I remember part of it. It was with a new GI and he didn't wait for the medication to take effect before beginning the procedure. I went out eventually but woke up pissed and yelled and cursed at everyone. Wrote about it to the hospital board but nothing was ever done. He was in no way gentle and didn't deserve a license. I never even went back to see him for the results. Before that, the prep was always the worst part. Since that happened I get scared and paranoid and I let my doctors know about it. I don't let them touch me if I'm still awake. I'll get up and walk out if they try. So because of that I continue talking to them so they know if the sedation is kicking in or not. Periodically they ask, "how are you doing?" Then I reply, "I'm not ready yet, I'll remember." Then they give me more through the IV. They keep a record of how much medication I was given and how long it took to start working.

Around here people are often given Demerol and Versed. One to relax you and the other to help you forget the procedure. If you're too afraid to go through with twilight sedation then you can request to be put to sleep for it. I prefer that way personally yet they often don't do it for adults because sometimes they need you to move/shift into certain positions to help the scope pass an area. If you're lying there asleep then it's hard to move a full grown adult but not impossible.

Afterwards you will have some minor abdominal pain from the air they pump in and from the biopsies taken. Make sure they take biopsies even if things look normal in there otherwise it's a wasted procedure. The pain lasts from a couple hours to a few days depending on the person. If it gets severe then go to the ER.

Hope your scope goes well. Keep us posted.
12-18-2014, 02:49 PM   #17
Anjalena
 
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I'd give anything to have $8 to grab some of that cream! *rofl* Oh well. Too late now. Broke and it's Thursday. Prep starts Monday night with the magnesium citrate.

I have loose spearmint leaf and peppermint leaf too. I buy them from the Natural Living Center to put in my bath to soak my feet in. Wondered if I could make a paste. Better not though. Anyway, I'll probably use the A&D with a little jojoba oil in it. That tends to be my normal lubricating mixture and it also feels good... But for this, I'll just use 1 or 2 drops of the oil cuz I'm mostly wanting it ointmenty rather than lubey I'm guessing.

Ya know what? I just looked up what that ointment is... calmoseptine. It's got a lot of name brand names. One of them, funnily, is Boudreaux Butt Paste. I giggled at that. That was awesome. Anyway, but other names for it are: Desitin, Desitin Creamy, Desitin Creamy Diaper Rash Ointment.

However, it has a Menthol active ingredient in it. Cuz calmoseptine is zinc oxide (desitin) plus menthol. So, I thought, how can I add some menthol to my desitin? I have some carmex lip balm and I know it's got menthol in it. But I looked at the active ingredients in Carmex and it also has Camphor. I dunno what that might do to a raw butt. So, I looked up what is menthol? It's just basically the derivatives, and usually synthetically created but not always, of mint plants. Usually peppermint but sometimes eucalyptus or spearmint, etc.

So, know what I decided to do? Since I only had $1.24 left in my PayPal account? I went to ebay and found and bought a teeny sample vial of peppermint essential oil! And I'll get a small bowl, squeeze some of my desitin into it, put some of my oil into it, and squish squish squish until I have some of my very own butt paste!!

Wheeee!

Ain't I smaht?!

(i hope)
12-18-2014, 02:58 PM   #18
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Jennifer, you are amazing! Thank you so much for all of that helpful information! The extra info about the wet wipes was nice. Others mentioned to have them, but not specifically what for. I know that sounds so incredibly stupid but I wanted to be absolutely sure what people meant them to be for. I mean did they mean for them to be used only in certain situations? But you going forward and saying to just use them instead of the paper, that was even more helpful! (i keep wipies at all times. after having ferrets a few years ago, i learned the amazing usefulness of those things!)

Knowing about being able to stop once everything is completely liquid and clear... that is amazing! Why is it that doctors never tell you stuff? *sigh* I wish there were some.... hrm. let's see... I dunno... Medical Association or something that you could talk to and complain to and make suggestions to about things like that. Aaah, but sadly.... *chuckle*

I have a tendency to have panic attacks in situations where I'm terrified of extreme pain. So I'll definitely be sure to talk to them about it. I'll call the office now. I dunno if it'll do much good though. This particular office doesn't seem to listen very well. =(

Because of all my medical problems, and the fact that I was having possible narcoleptic events, he was thinking of maybe putting me under full general anesthesia, intubating, and using a respirator, and the full works. I really kinda wish he had.
12-18-2014, 03:06 PM   #19
Anjalena
 
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Okay, they said I'm going to be having MAC sedation I think is what she said. She said an anesthesiologist will be there monitoring me the whole time and that it would be a deeper sedation than the normal type but not full general anesthesia where I'm intubated. She said the anesthesiologist would be giving me a call a day or two before the procedure... so I'm guessing on Monday or Tuesday.

Wow, I didn't know how anxious I was. My anxiety is through the roof having just had to call and ask about it and I'm dizzy. (not that that's anything new. been going through a LOT of dizziness lately. it was a big discussion at my primary doc's office today) Time for meditation! heh. Anyway, that sounds like it'll be better than the regular sedation, right?
12-18-2014, 03:17 PM   #20
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You can still be put under if you would prefer to be. There's still time. It may push back your scope or for all we know it could be sooner if there's an opening. You won't know until you ask.

Doctors and nurses never mention to stop the prep once you're running clear because most people don't do the prep correctly. Many don't drink enough of it because of it's taste, their burning butts and a lot of people stop early because they think what they're seeing in the toilet (no formed stool etc) is good enough and it's not. They don't want to have to send people home to prep again and try to do the scope again so the instructions really are overkill to avoid that.

Plus going on a clear liquid two days before prep day will need less prep than if you ate the day of which you can depending on which doctor you see. My instructions always allow a light breakfast and lunch the day of prep but I go on liquids anyway cause I don't want to be sitting on the toilet all night. I want sleep. I also start my prep about a half an hour to an hour earlier then suggested so I don't feel the urge to go around bedtime. For me it takes a while for the prep to start working and I'll be up around 2-3 am still going off and on. For others prep works fairly quickly.

Another thing to keep in mind is to keep drinking to stay hydrated. You can drink anything clear that doesn't have the colors mentioned above as a chaser or something to just periodically sip on. It will also help flush out the prep once you finish it.

As for the panic, be sure to mention it to the nurses when you're getting your IV and mention it to the doctor when you're taken back to have it done. Mention it often. If they don't listen then it's not a good practice and I'd consider finding another.

Edit: Ok so you're getting MAC sedation which is local anesthesia together with sedation and analgesia (pain killer). That should help with your anxiety a lot and brings another person into the equation for you to mention your anxiety to.
12-22-2014, 04:26 PM   #21
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Can I chill magnesium citrate to make it taste better? Or any other tips on that?
12-22-2014, 05:42 PM   #22
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I haven't ever done mag citrate, so I'm not 100% sure, but with the vast majority of preps yes you can chill them. (I just googled, and google seems to confirm that yes you can chill mag citrate.) I've also heard people say to use a straw to drink the foul-tasting preps - have the straw go as far back in your mouth as you can so that the prep basically bypasses your tastebuds. I hope that helps! And that's interesting about your homemade version of calmoseptine, I never though to try to make a homemade version - let me know how that works!
12-22-2014, 08:54 PM   #23
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Will do, Cat!

My problem is, I accidentally froze the mag cit. =( I hope that doesn't mess it up. I'm letting it thaw.

Things are trying to unravel and I'm patching them back up as fast as I can. The procedure is day after tomorrow, Christmas Eve morning. This WILL happen. I had to kick 3 doctors in the head to get the damn thing set up in the first place and I've spent time, money, effort, and anxiety trying to get it all ready and everything in place. We're doing this if I have to enlist The Dragon (or Hogwart's) or something! *rofl* (yes, I'm a big ol' geek/nerd. I love me that way. *grin*)
12-23-2014, 08:51 PM   #24
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Hope your prep is going well.
12-24-2014, 01:36 PM   #25
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Finished the procedure. Back home. I woke up in INCREDIBLE pain!! I was hollering out in pain... lower right quadrant abdomen and left abdomen. Trying to move was extremely painful and they kept telling me to breathe cuz I kept holding my breath. I tend to do that when I'm in a lot of pain. But I forced myself to try. They got me turned over onto my left side and scooted up on the bed a bit. The anesthesiologist came in and went off to get something for the pain and the nurse was off to get the doctor. They'd asked me if I'd farted yet and I said no. While they were gone, I tried, between gasps of horrible pain, to pass some gas. Once I did... my pain went down greatly. Not gone, but greatly reduced to a very dealable level. So I guess it was just trapped gas? I did have very severe, extremely painful trapped gas issues when I was a teen and in my early 20's that caused me very severe pain. But that all faded many years ago for me. I dunno. Maybe he pumped in too much air??

Anyway, I'm so depressed I can't think straight. He found 1 polyp and diverticulosis... which diverticulosis is nothing. 20 bzillion people have that and it pretty much never causes pain unless you get an infection with it and it becomes diverticulitis. I don't know if he removed the polyp when he was in there but it sounded like the polyp wasn't a big deal from what the nurse person told me.

The only thing he recommended was for me to eat a high fiber diet. Come in for another visit in 4-6 months. And have a repeat test in another year or two (or however long it was) if I'm still haven't problems. THAT'S IT!

I asked her (the nurse), what about the problems I'm still having now?! What about the severe abdominal pain I'm still having now? All the severe dizziness? The flank/back pain that can happen on either side though seems to be stronger most of the time and happen more often on the left side but it's intermittent and seems to happen mostly several hours after I eat... like later that night or early the next morning... usually when I'm in bed though. (and if I go a few days without eating... poof, no flank pain at all!) and it feels like someone's jabbing me hard with a rod or something... best i can describe it though I'm horrible at describing pain. And sometimes it's just a powerful, strong ache or something? What about the 20 lbs of weight I've lost in literally the last 30 days without exercising or being on a healthy, low calorie meal plan. I mean, hell, I've gone through many periods, of 6+ months where I only ate once a day, a small meal, because I was going through severe nausea issues (apparently due to gastritis that I didn't know I had) and I didn't lose that much weight at all. Now from Nov 20, where I weighed 233 lbs at the doc's office, til Dec 20 where I weighed in at 213 lbs.

My temp is still doing this fluctuating thing that I first started noticing after my bout of very severe pneumonia that hit back on June 28 of this year. Took me a couple of months to heal fully from that. Even got attacked by a couple of opportunistic viruses while I had pneumonia because my immune system was so compromised from the pneumonia. But my temp fluctuates back and forth, especially when I'm feeling badly, between the lower 97's to the high 99's or right at 100. And that's what it's doing now.

I get these damn chills when I'm feeling bad, without having any technical fever but they're INSIDE me. My skin can feel warm, though sometimes (not always) my hands will be cold. But I will shiver and quake so hard inside my body that it would be like what your body would do if you were to sit down half-naked in a snowbank. It'll shudder all the way up to my teeth and my teeth will start clattering. But I won't have any technical fever. No clue! One night back in the summer, I took my temp during those chills and it was 96.6! I checked again to be sure and it was. And it's a good thermometer and I use it in the same ear every time.

My pain is horrific at night, but taking my Omeprazole at night rather than the morning seems to help. Taking the Dicyclomine, the max dosage they put on the bottle... which is 2 tabs 3xdaily... helps take the edge off the pain but I'm still in constant pain.

I get sudden bouts of weakness and dizziness where I cannot finish what I'm doing and if I try to walk, I will collapse into the floor. I have to holler for my 25 yr old son to come help me to get to my bed and then I just collapse onto that and I usually have to just sleep it off.

Getting up and moving around, walking around, especially walking up/down inclined planes (like ramps), makes the pain kick up worse for some reason.

I've always had problems with constipation. Now I'm having diarrhea issues all the time. And sometimes it's so bad that I'm having YELLOW poops! Just the whole toilet bowl will be yellow water. And that's without taking the Miralax. I usually have to take my Miralax about once every other day to keep myself from getting painfully constipated. I haven't really had to take it in a couple of weeks cuz I keep going from normal/soft, to raging diarrhea. I stopped taking my bisacodyl laxative bullets over a month ago because they were giving me diarrhea for days. Then just a partial dose of Miralax was doing that so I stopped taking it.

Anyway, I'm just thankful I asked him to take biopsies when he was in there because if diverticulosis and a polyp is all he saw, I guarantee he wouldn't have taken any. We'll see what the biopsies say. But right now, I'm pretty much wanting to hit the Quit button. =(



**Editing a few days later** No worries, I won't actually hit the Quit button. But we sometimes feel like it. And I think as long as we're not in any danger of acting on our feelings, it's important to let ourselves feel them for a brief time rather than bottle them up or push them away. I allow myself to feel the helplessness and frustration and depression... for a short period. A day or less... with the understanding in my own brain that the next day, I'll be picking myself back up and moving on. I just wanted to make sure everyone understood that I wasn't actually suicidal. I don't want to scare anyone.

Last edited by Anjalena; 12-26-2014 at 11:47 AM.
12-26-2014, 11:25 AM   #26
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Some guidance would be helpful guys. What do you guys think I should do?

Also, should I ask for the reports and which reports should I ask for? Should I ask for a 2nd opinion or ask for another doctor to look at the tests or something? I'll tell ya that getting into a G.I. doc here takes FOREVER. It took 9 months just to get into this guy. The waiting lists are just excruciatingly long.

Do any of the symptoms I mentioned above sound familiar at all? That's not everything, but that's a lot of it. I was very desperate and feeling so horrible so that's kinda what I scratched out that morning before I went to bed. Hopefully it's legible.
12-28-2014, 01:36 AM   #27
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A lot of members haven't been online due to the holidays so forgive the late responses.

Yes your symptoms all sound familiar but many medical conditions can cause those symptoms so for starters I'd wait and see what the biopsies say. They should be ready in about 3 weeks tops. You should have a report that says what the scope found and then later get a report that says what was seen in the biopsies. You're usually given images of the scope as well. Did they give you anything? The report would say if the polyp was removed or not. I'd get a copy of it and the images if you don't have that already.

If the biopsies don't explain what's going on then I'd ask for further testing to find out what's going on (MRI, MRE, CT scan, small bowel follow through, pill cam).
12-29-2014, 06:04 PM   #28
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Yes, what Jennifer said - the holidays takes most people away from posting on the forum. Sorry you didn't get responses sooner! And for me personally, I got the flu right after xmas, so I've been sick(er than usual) and am just starting to recover so this was my first chance to check the forum for about a week.

And yes, again, I agree with what Jennifer said - get in writing the results of your biopsies, and the photos (presuming they took photos). My GI knows I'm a pain who always asks for results in writing, so at my last colonoscopy last year, he handed me a written report of his visual findings, with photos, the second I woke up. My experience is that biopsy results usually come to me in the mail within a week or so, but again, with the holidays things may get a bit delayed, so if it gets to be a couple weeks and you haven't heard anything, give your doctor a call and ask the status.

And, again, what Jenn said! If the biopsy results aren't conclusive, ask for further testing, particularly of the small intestine (MRE or pill cam would be the ones to look into for looking at the small intestine). If it is Crohn's, it can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, so it may be hiding in the small intestine where it's not easily found on scopes (the scopes see just the very beginning & very end of the small intestine, so there's quite a lot of small intestine that isn't seen on scope). I hope that helps!
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