Scared, frustrated and down right confused..

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John-88

Joined
Oct 18, 2011
Messages
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Hello everyone,
Im not normally one to open up about my peraonal health problems but I felt I meeded to search out a discussion based site to maybe get some insight as to what others with ibd's think.
Im 23, and in college. Im just making it financially as a college student and then I started getting sick alot. It started with the vomitting and diarrhea. I was having alot of bm durring this time. I thought maybe I caught a bug somewhere since I work with the public. Two weeks went by and the symptoms were bad. The stomach cramps were terrible and the pain was sometimes enough to make me catch my breath. I dont like going to the doctors, even though im an aspiring PA. I let things slide for a littlw longer in hopes that it would correct itself. I had been spotting blood on my toilet paper and started to get anxious, but still too stuborn to see a doctor. About three weeks ago I had a major episode where I lost alot of blood durring my bm and then passed out. I tried seeing a doctor but no one could get me in fast enough.
Finally after seeing a doctor they gave me some suppoaitories and sent me on my way. Didnt ask questions or run any tests.. I was confused and scared. I did not know what this was or what was going on.
The second doctor though I was a liar and asked if I really had blood..
The third doctor I saw today would not help me and told me to go to the emergency room for cancer treatment. (i dont have cancer, I dont think)
I went to the emergency room after 3 weeks of no answers and their tests were inconclusive. The blood has stopped and the symptoms seems to be subsiding but I am worried. I cant keep missing class because I cant get off the toilet, or calling out of work because I feel like im going to pass out and am very weak. I cant keep sitting down for dinner wondering if what im about to eat is going to tear me up and give me stomach pains again. I go in to see the GI on thursday but with the symptoms lessening every day how am I supposed to explain this? Im very frustrated indeed, but more so just scared..
 
Hi John and welcome,

I'm so sorry you're having so much trouble :( `And it's quite understandable that you're scared. I'm glad you have an appointment with a GI on Thursday! You mentioned your finances, so I hope you have insurance through all of this :(

You could keep a diary of your bowel movements and how much pain you're experiencing. That might help the GI understand just how horrific all of this has been.

I wish you all the best :) Please keep us updated!
 
Thank you david,
I do have insurance but I worry how much they will pay for. I will keep updating as I go and letting you all know what I am dealing with.
If anyone can give me an idea of what they think this is please feel free to chime in. my father thinks its crohns but hes not a GI so he cant be sure
 
It could be Crohn's Disease, it could be Ulcerative Colitis, it could be parasitic in nature and the bleeding was from something like hemorrhoids that are quite upset. It could be a variety of things, hopefully it turns out to be very little and soon you'll be forgetting you ever came to this forum :)
 
Hey John,

Sorry to hear about the troubles you're having! Completely understand why you'd feel scared not knowing what's going on. Hopefully, the GI can get moving on an actual diagnosis. Why does your father think it's Crohns? Are there others in your family with Crohns?
 
Doctors can be such jerks sometimes - "do you really have blood?" Check this out till you get an answer. My crohn's was stop and go for several months before it went completely out of control. I'm not saying it's crohn's but bleeding is not normal - check it out. Please find a good doctor. I started at a walk in clinic and was referred to the first available GI doc (who was TERRIBLE). Hint: any doc that has a clear schedule usually isn't that good (learned this the hard way). I also noticed I wasn't getting very good care from that hospital in general. Maybe try another hospital in your area. google doctor ratings or top docs in your area. It made a huge difference for me. The good doctors can take awhile to get into, but see someone. Beg a nurse to get you in within a few days, sit in the waiting room if you have to. My crohn's went nuts because I didn't see a doctor soon enough and I put up with a bad doc for too long. Now I still have a nasty hemorrhoid from pooping my guts out for months and fistulas that just won't go away.

Your body reacting like this can really take it's toll and make you really tired. I know you probably don't want to hear this, but you might consider cutting back, or even dropping, your workload for now. It's ok. I commend you for carrying on through all of this - it's tough.

Just in case, don't let them do a simoidoscopy while awake - it hurts so bad if you're inflammed!!! If they want to scope you, make sure they put you to sleep completely.
 
Tesscorm said:
Hey John,

Sorry to hear about the troubles you're having! Completely understand why you'd feel scared not knowing what's going on. Hopefully, the GI can get moving on an actual diagnosis. Why does your father think it's Crohns? Are there others in your family with Crohns?
Click to expand...

my dad has been researching and is a chiropractor. he says i have the symptoms but it could also be a number of other things.

the doctor did not see a hemmeroid but i know the initial doctor saw fissures. she told me about the fissures but told me they are only a symptom of something not the root cause since i have other symptoms.

I seem to be going back and forth between feeling really sick and having diarrhea now to be being extremely constipated and having stomach pain. I have not had a bm now in two days where before i was having one every 2 hours just about. im also now down 15lbs in a week and a half..
my appitite has been little to non existant therefore my ability to do things normally without feeling exhausted is very little. im weaker than i was and alot more tired. its just not normal for me. over the summer i was working 70hrs/ week. now ill be luck if i can make part time status.

one more day till the doctors..
 
Hiya John.
Bleeding from the anus is a sign something is not working as it should. For a Doctor to ignore this is bordering on ridicules to say the least.
Haemorrhoids can be very painful and if serious can need surgery. What you describe seems to be possibly more.(I hope not). The fact that it is waning does not undermine that it has already happened to you and needs answers.
Your GI may suggest further exploration.....
Take care...
 
See some days I can go a few hours and feel ok enough to do things. Tonight I went to work but I eventually figured I should eat. I had salad and got through only a little until I couldnt eat anymore. A littlw while later I feel like im gunna crap my pants from diarthea and then im constipated and cant go. Wtf! Tomorrow is D day and im hoping the doctor consult will go well.

I dont have hemmeroids though as confirmed by the ER doctor. I was having fissures though but they finally healed after over 2 months..
 
Daily update:
Finally went to the bathroom after 2 days of constipation and had some poo that was dark and some reddish. Last night I was having alot of stomach pain but I thought it was constipation pains. Guess not.
 
John,
I was diagnosed with Crohn's about a month ago. Before I always had a hard time eating big meals and would have stomach pains if I ate too much. I've always been skinny and people wondered why I didn't eat a lot, even my parents.

I also have had bloody stools for the past 6 years and have been too embarrassed to tell anyone about it. Since my diagnoses I have been on predisone, a steroid, and have had the appetite of a sumo wrestler, lol. I have put on over ten pounds in a month and it feels great!

I have also been constipated the past week, so I started drinking coffee early in the morning and it seems to help. Also yogurt with probiotics seems to help.

I would do as much research as you can and find a good GI doctor who is willing to listen. Once i figured out what was wrong it was a HUGE relief!

Also, I feel a lot better on days I work out, mostly running and biking.

Good luck and I hope everything works out!!!!
 
My body was so messed up when I started having my first bad flare (before I knew what was wrong with me). I would have really hard stool and diarrhea in the same bm! I was misdiagnosed with UC first. UC and crohn's are very similar. I don't know what you have yet, but a lot of people with these types of problems can't handle salads or certain raw veggies very well. I had popcorn for the first time in a year and it tore me up inside. Let us know what the dr says today.
 
Update:
Just saw the doctor and he said I probably have an IBD based on my symptoms but I need a colonoscopy to determine what I have. He said crohns, UC or ciliac. Thank you all for the responses.
 
Colonoscopy

Just in case you were unaware - the colonoscopy is not a terrible procedure, it is how they diagnosed me (pretty sure I had mild IBD for 10 years prior). I was insanely sick when diagnosed, and ended up in hospital for 3 weeks on IV drip and prednisone.

Sounds to me like you need to shop outside of your area for a good doctor, where are you??

If there's somewhere close by - it would be worth the drive.

Just remember... we were all scared/confused/frustrated before we had our forced education with Crohn's. You are not alone.

Tracy
 
I have a great doctor who actually listened to me. You know hes the only one yet to look me in the eye and shut up for once instead of feeding you your symptoms and assuming they were right.

I did have to drive 2 hours to see him and wait a while but once I was in he was very kind. He knew I was in pain so instead of pushing on my stomach to find the source of pain he asked first.. His bedside manner was awesome. And to have to only wait 11 days for the colonoscopy is awesome. My friend cant get in till february..that is scary.

This site is awesome though and reading through all your stories makes me feel like im not alone. I feel terrible for those of you who have it so bad. My heart goes out to all of you. Thank you
 
Well John,

I hope you have stellar results in 11 days - will be thinking about you - sending support from here.

Tracy
 
From what you said your doctor sounds like a good one. The first dr I had was a jerk and acted like he was God. The dr you have sounds a lot like the one I have now and he is awesome. We talked about moving to another state at one point and my first thought was, "what about my doctor?" Not kidding - that's with having great family here too.

The colonoscopy really isn't that bad if you're completely under. The worst part for me was the night before being on the pot for 3-4 hours.
 
Update:
I have started trying some holistic meds to cover uc and crohns. I have chamomie tea, aloe drink, mg and na suppliments, probiotic pills and activia, ginger and cinnimon. These all are natural drugs to reduce inflammation. The aloe works the best so far. It has been calming my stomach and slowing down the rate at which I have been going to the bathroom. I dont know who else has tried these but maybe they work. Idk. It seems like forever, waiting for reaults.

Im hoping for the best case scenario of nothing is wrong! But then again blood doesnt come out of your butt for nothing.

My boss has told me to stay home but staying home doesnt pay the bills. How many of you work? If you cant work what do you do for money?
 
That's a good question John-88. I was working up until about 6 months ago - how can i go back?? Customer Service Position - With the strong gas - noisy gas - unpredictability of everything? I'm fortunate to be in Canada - My meds are covered by BC Pharmacare - so long as I file my taxes - at $5000/month - it's a blessing. I have coverage through work - but it's only 40% of my wage - and seem to still make too much to collect Unemployment Insurance. Not sure what we will do - are selling our vacation property now - just bought it and barely even got to use it.

Do other people work with these troubles??
 
Hey, i'm really sorry you've been through all that. I'm 16 and can completely relate to how your feeling.. Scared! When i kept going to my doctor about losing excessive weight, never having any energy, constant diareaha, vomiting, loss of appetite... He turned around and told me it was part of 'Puberty'. I went on for 8 weeks until i finally cracked and let my mum take me to A&E, i was instantly admitted into hospital and they've worked wonders. I've been here 5 weeks now and i've had a few operations and quite a few scans and by the looks of it i'm going to be released in the next few days. All i can say is try not to be so stubborn about going to the hospital, i wish i wasn't so stubborn! I can also relate to the school problem, i'm being held back a year because i haven't attended school this year :( I wish you all the luck and hope everything get's sorted!
 
My gf and I live together and I am fortunate that she will help me for as long as she can but I do not make alot of money and I dont own a house. The only thing I own is my car which I just bought a few months ago. I dont wanna loose my car bc I cant afford it.
I work a blue collar position and am always in customer service. I cant give premium customer service when Im running to the bathroom.

So far ive been to the hospital twice and no answers. I have lost nearly 20lbs in the last two weeks. The blood has been more prominant for the past 3 days. My colonoscopy is monday so we shall see what happens. Thank you for the responses. :)
 
Work is a tough one. Thankfully with my husband being a computer programmer I can stay at home with our daughter. I had my first bad flare last year when she was a few months old and we had to move in with my parents because I couldn't even take care of myself. He was trying to finish school and work full time. Now that he's done with school and we're on our own again money's still tight with all the medical bills and my student loans. I've taken up couponing to be able to put a little money into savings. Don't be afraid to move in with your parents if you have to.
 
Update:
So I was feeling ok yesterday and able to work and do my daily thing no problem. Today I feel stomach pain again and I have developed small red bumps near my eye. My eye is semi swollen. I have no idea if this has anything todo with whats been going on but im curious as to what this is. Anyone else with this issue?
 
Crohn's and I believe UC also (autoimmune diseases)can produce inflammation throughout your body. I don't know for sure if it's connected but I wouldn't be surprised. I'd watch out for signs of infection and see someone if it keeps getting worse. At least your colonoscopy is getting closer!
 
Im movin' somewhere else. What about austrailia?
Anywho.. I've been feeling great the past 3 days and im hoping it stays this way. Do you guys ever feel this way Going back and forth? This thing we have is very bipolar amd cant make up it's mind..
 
Sometimes it's diet based. So maybe something you ate really triggered it. I grew up with tummy issues that were brushed off by pediatricians as growing pains. After my second child I started noticing mucus in my stool along with the tummy aches that had become normal to me. It wasn't until I noticed blood that I got worried and went to emerge. They thought I got some type of infection from being in the hospital from the birth but after doing stool test they discovered it wasn't. The colonoscopy was easy and actually the cleansing was kind of a relief since my bowels were always so full and the best thing was that I got answers which I'm sure is what you want. It really is an expensive disease to I hope for your sake that it isn't Crohns but if it is know that it can be difficult but you will manage. We all have and it's always nice to talk about it with ppl who understand since ppl who don't always seem to talk to you like your just eating the wrong things!! Good luck with the colonoscopy Ill have my fingers crossed for you.
 
Ok guys im done with my colonoscopy. While they were in there I had 2 resections. Two polyps removed..but the doctor couldnt explain my bleeding. He said he had never seen polyps in a 23yo person. Im drosy from anestesia so ill update again tomorrow with more detail.
 
John,

Your story is so much like mine, I was a college student, I had Doctors tell me i was nuts for coming into the ER, one doctor flat out yelled at me and told me to stop looking for attention.

A colonoscopy is what did it for me, i finally went to a better hospital and they had it figured out in 2 hours.

what ever happens with it, stay on a good diet and medication regimen. you will not regret it, I didnt care at first, thought i was a invincible athlete and nothing could hurt me, I was wrong.

I would get ready for some weight losses and gains. Just remember that we are all out here, all people who are more than willing to talk about this stuff, it is always better to have people to talk to when no one else understands, i know that everyone that i knew did not have the slightest clue what i was going through
 
Thanks pj. Im just frustrated and im concerned with the biopsies of my colin and the polyps. He said he had never seen thm in someone so young. My grandpa had/has prostate cancer and that freaks me out. Ill take anything but that. Im very sore though after the colonoscopy. And sure as anything im bleeding again after it. But,he couldnt find anything unhealthy...
 
Glad the colonoscopy went well.Sounds like you have a good doctor.From this point on things will starst to get better.:cheers:
 
My father had polyps as well but no other things were wrong. They were what was causing his bleeding. Some bleeding after a coloniscopy is normal. How much blood are you talking about before though. Was there enough to turn the toilet water or was it when you wiped? Some people are predisposed to polyps you may just be unlucky. If they were cancerous they would have probably given you some indication that they weren't comfortable with the look of them. I hope your feeling better overall. And that the news when it comes is good
 
The bleeding before was alot it was very significant. And he said the polypa were small but he wasnt sure so he is running a biopsy.
 
My son is 20yo dx in 2007 with crohn's disease. He just had a colonoscopy two weeks ago and he also had polyps which were removed and a biopsy was performed. So I don't think it is that uncommon in Crohn's patients to have polyps. I hope everything goes well
 
Hope all is well with you John. I'm 24 and just recently graduated from college and married in the last year so I'm in a similar boat as you. I'm having my colonoscopy done on Monday, and I am terrified!
 
Hi John, glad to read at least you got your scope done, there are many opinions that people will share with you, some you can relate to some you can't, and you'll get very very confused but please try stay positive.
from my personal experience i can relate to a lot of what you're saying, you mentioned that you noticed a red bump near your eye, what i can tell you is that Crohn's can effect you from the eyes to your feet (Swelling of the feet and lower limbs) that said I'm not saying for one minute that it's Crohn's you have it's just another symptom. You also mention that you've felt good for three days, I'm afraid that's part and partial of IBD, (Crohn's Ulcerative Colitis) you can get a flare up at any given time and it can knock you for ten. sounds to me like you're going to have to ride this one out until they come to a conclusive diagnoses. I wish you well and i hope they diagnose you sooner rather than later. Good luck and good health, please keep in touch.
 
PRgal: the proceedure was so quick and I was put out for it. You may say some funny things to the doctors and nurses but thats fine. I am sore after them removing polyps and biopsy sections. I had blood in my stool.
You have to be careful after though. I was reasting when I was woken by my stomach pain. I got up and used the bathroom. Got up amd passed out. I had no idea why or where I was for a second. I did hit my head on something but im ok. I know the concern of a cuncusion but I do not want to go back to the hospital unless absolutly necessary.
Derek: thank you for your words. Im worried bc the doctor couldnt find anything other than the polyps. But I have also been feeling ok for the past few days maybe a week now. So any inflammation may have subsided. I dont want to have to do a colon prep ever again. It was horrible. Being hypoglycemic doesnt help either.
 
Hey, John ~ I'm just now catching up to this thread. Welcome to the forum. :)

I'm so sorry that you're having such a horrendous time. Believe me, I know how you're feeling. Your symptoms sound almost EXACTLY like mine. I have the same problem with passing out even. It's called Syncope. Stay super hydrated. It helps me a ton! Everything in your story (right down to doctors thinking that we're lying) matches what I went through... everything except the bouts of constipation. Plus, at some point, the D had turned into straight blood spewing out of me... hence the passing out, I guess.

You definitely came to the right place here. And it sounds like your GI is taking good care of you. I am crossing my fingers that you don't have IBD or cancer. But if so, we're all here for you. :hug:
 
Hey, thanks jessi. I appreciate u taking the time to read through it all. Long story short my gi wasnt going to treat me for my symptoms. He missed alot in his report that was evident durring a phone call to him trying to explain that I was in more pain after the colonoscpy.
Went to a new doc and he is treating this as the uber most genealized dx of ibs until we learn more.
 
Well, I'm really glad that he cares so much about you and your health. Sounds like a really good guy. I hope it's squared away real soon.

Have you been to the Undiagnosed Club yet? There are awesome people there that I'm sure will also be able to help you out. Here's a link, just in case.

http://www.crohnsforum.com/forumdisplay.php?f=75
 
Yes I have looked through but I havent posted yet. I figured im general ibs so ill post in my first general intro. Lol.
My gf's cousin has crohns and was dx'ed young. He was talking to me today about everything and that helps alot.
 
Update:
Going into the hospital for my next scheduled event, the upper gi barrium x-ray. I really dont think they will find anything there, but this doctor is very concerned with crohns so he wants my entire system checked since I have nausia and have been throwing up.

A few extra symptoms have been trickling around. I have had two nights I can actually remember waking up and being entirely too sweatly to have been fast asleep. I have also had fever twice this week of over 100*F. Just when u think u feel better or are on the path to feeling better, you've robbed...again. Im just so glad I have this forum to vent this all out.
 
I'm glad your doctor is concerned and taking this seriously. Sorry you're throwing up. That sucks! I never had the nausea aspect until the last few weeks - strange. I remember getting the fevers when my fistulas first appeared - sure hope you don't ever have to deal with that! I'm glad you know someone you can talk to about crohn's. I wish I knew people who have it, which is why I like this forum. Thanks for keeping us updated.
 
Its nice to have soneone to talk to in person. You all seem so nice, I wish I knew you all in person. Thia forum is very supportive and educational.
As for the fevers I really dont know whats up with that. One question that has been on my mind is; when they do these tests and they come back inconclusive, what does that mean? What if none of my tests show anything yet I continue to have these symptoms?
 
Those would be good questions to ask your doctor. Wait out the barium x-ray, see what happens with that. This is a tough time. I was misdiagnosed with UC for 5-6 months before I found a new doctor. I was really, really sick during that time. Did you check out the undiagnosed club on this forum already? You have to be the judge with your doctor. It never hurts to have second opinions (or more). Did you not have any inflammation anywhere in your colon? Were they able to get into your small intestine at all? This sucks. Sorry you have to go through this. Hang in there.
 
stupidbody! said:
My body was so messed up when I started having my first bad flare (before I knew what was wrong with me). I would have really hard stool and diarrhea in the same bm! I was misdiagnosed with UC first. UC and crohn's are very similar. I don't know what you have yet, but a lot of people with these types of problems can't handle salads or certain raw veggies very well. I had popcorn for the first time in a year and it tore me up inside. Let us know what the dr says today.
Click to expand...

OMG so i was diganosed with UC by two different doctors who did full on colonoscopys now my new GI doc says it's definately Crohn's and he only did a sigmoidoscopy. he's also supposedly one of the best GI docs in my area. what's the difference and how could this misdiagnosis happen?
 
From what I have researched johnnyo, they are very similar but biopsies will probably give you the best dx. I hope your doing ok. How long have you been suffering from this?
 
They are very similar. I think they can be difficult to differentiate even for doctors sometimes. Some doctors are definitely better than others. My current dr. was willing to bet on crohn's just because I had a fistula. He still did all the other test too. Glad you found one of the best GI docs in the area. My dr. is too. I think that really helps.
 
yeah it works for and against me. he's also narrow minded and wants to put me on Humira and i'm riddled with infections from the 6mp so how a stronger med is supposed to help i don't know. it's all so very frustrating as you all know.
 
well John, i've had "the shits" ever since i can remember. usually after greasy food.

i was diagnosed in 2006. i'm 36 years old. i've been up and down with it.
 
I sure hope u can get on the right track. Maybe the stronger meds will work for you. Ask about maybe an antibiotic for the infections. Although antibiotics make me feel worse so who knows. I can understand amd attest to the frustration.
Idk, God has to have a plan.
 
Update:
Im trying to get medical leave for this semester which is hard when there is no dx. Idk what to do with this and regular doctors notes wont work. I woke up today though and felt ok, tired but ok. Now that im out amd about here I have felt so sick. Campus is a mile away from the car and the offices are on the opposite side of campus.
 
Oh John-88, take it easy. Can you just tell them you feel terrible and will come back when you can? That's basically what my husband did last year when I was so sick. One of his professors even let him turn her class into an independent study which he finished the next semester. Everyone seemed to be very understanding. Have you had your barium x-ray yet? Is your doc doing any other tests? You never said if the dr. found any inflammation. Were the polyps the only thing he found?

JohnnyO - I was having a terrible time with infections when I started Humira. Antibiotics did help quite a bit. Humira, wow! That stuff worked wonders for me. As for the infections, they were a big problem. I started drinking a few drops of food grade hydrogen peroxide in water (away from food) to keep the infections at bay and that works really well for the long term. Shockingly got the ok from my GI to continue with it! If you're interested in trying it let me know or look it up - major do's and DON'TS with drinking H2O2.
 
I couldn't believe my doc was ok with it either! He just said it sounds like it's helping keep my fistula from being infected and it's a good alternative to being on antibiotics all the time. I am still on Humira (7 months now). Get a small bottle of hydrogen peroxide at health food store (35% solution or so). Start out with 1-2 drops in a glass of water and work your way up (no more than 7-8 drops in a tall glass of water). I only drink 4-7 drops once a day for maint. now. You could probably drink it 3 times a day or so if you need it. Do not drink it anywhere near food - you'll feel sick and probably throw up! Only drink it on an empty stomach (drink at least one hour before meals and 3 hours after). If you really need to eat something fruit or fruit juice only is ok. Drinking too much H2O2 can make you nauseous or not diluting it with enough with water.
 
Stupidbody; sorry I dont know your real name. I had my barium x-ray done and the results are not back. They didnt see tumors so thats a plus! I had the polyps removed but have been researching still. Apparently polyps can form from inflammation sometimes. Maybe tgis is whats happened, maybe not. I called my doctor back because they have my biopsy results but they wont twll me over the phone. I have to wait till december 2nd to find out the results of my colonoscopy that was 2 weeks ago?
Excuse my french but this is bull $h!t !... As we speak I have begun to have those sharp pains amd cramps again. I wasnt having them since I started the medication. Now theyre back. Waiting tables yesterday from 3pm to 2am probably isnt helping. I just dont get it. Ive been eating so well, I have been eating more than I have been lately and feeling much better.
One thing that happened to me was I was breaking out in a cold clammy sweat earlier. It made me feel nausious and weak. Im wondering if I should get a stronger anti-inflammatory medication since the one I have doesnt really seem to be helping when im trying to be active. I cant just stay home for months on end..
I was always and always will be a worker. I work really hard for everything I have and it makes me feel so great. Not being able to do the things I have set in motion for years now is killing me. Im just depressed because this was my last semeater in undergrad. I was going to walk this winter. Now everything is on hold because of me.
The teachers wont let me make anything up. The lady at the office for the registrar told me I may receieve an F for the semester if I cant convince the registrar to allow for medical leave. If that happens I can kiss 100k away that I spent on education.
Im sorry for the long rant.
 
update:
The forst doctor I saw missed alot in his report about my colonoscopy, my new GI said there are things in the the report that were missing. He had also forgot to mention in his consult report that i had been missing school and work.
I specifically remember saying to him that I dont need a note for work but a note for school would be good to have just in case. Now they wont write a note stating to the school that i have not been able to attend class!!!!

On the side I called the registrar and she told me to bypass him since he doesn't seem like a good doctor. The funny thing is, The health services at the school highly recomended him and talked him up so much. Thank God the registrar, who is solely responsible for approving the medical leave, said she justs need doc. that I was seeing a doctor. She is going to approve it and she understands the circumstances.

As for the H2O2, I used to give that to my dog when he would get into my easter or halloween candy. It makes you throw up. I'm glad it can help with the infections but one thing to remember about H2O2. You use it initially when you cut you self to clean infection, but you usually stop using it after because H2O2 can scave off the new regenerating cells. Be careful how much you are taking it because any new cells regenerating from the infection may be removed. I don't know much about drinking it but I would assume that it works the same since your skin and the lining of your GI tract is made of epithelial cells. They are basically the same with some differences.
I hope it does work for you johnny.

Has anyone ever asked about cortizone shots at the sites of abscesses? I used to have one in my groin and a cortizone shot healed it in one weeks time. I dont know if this would help but they do give cortizone suppositories to reduce anal inflammation and hemmeroids. could this help with you guys? Can you tell I have my thinking cap on?
 
That is ridiculous they can't get you in sooner to get your results! My doctor told me to set up times days or a week after those tests with his nurse. He moved me right through everything that needed to be done. He is pretty well booked, but they must leave spots open for stuff like that at my hospital. Are you on prednisone? 40mg? That med would give me "hot flashes" (for lack of a better term) early on. You say, "I cant just stay home for months on end," but you also can't live the life of a typical college student and expect to get better. Whatever your body is going through is incredibly draining. My husband was going to graduate in the winter also, but he graduated in the spring. Have you heard of the spoon theory? It's a bit long, but it explains pretty well how much it takes to just get through the day when you're sick. I used to take pride in being a hard worker, but now my husband is happy with me if I just get a few things done in a day. If I'm not doing well he'll be disappointed if I do much of anything around the house. He knows I'll pay for it.

Is it possible to graduate later? I'm guessing they might not let you come back if you flunk out? There must be a way. It's crazy they won't allow medical leave without a dx. Just a thought - could this work?: Speak to the higher ups. Write a one page letter, a condensed version (but detailed) of the worst crap you're going through with being sick, explain why you haven't had a diagnosis yet, maybe end it with why you want to stay, something like that. Let them see what it's like to walk in your shoes. Give the letter to as many people as you have to to be heard. Someone should be understanding. One thing I bug my husband about sometimes is telling people details (over-inform) as guys often tend to just say, "I'm sick. I feel like crap." For all they know they might think you have a cold or something. Sorry this got to be lengthy.
 
Wow that sucks you have to wait to find out your results. Waiting is awful. Get a new doc who isn't an asshole who won't make you wait a month to get results and will write you a doctors note . My crohns buddy and I were talking about how crohns has held us back. Makes me want to cry if I think about it.
 
Sorry I'd been working on this off and on this morning and hadn't seen your new post. Yay, you got medical leave! Thanks for the info about H2O2. I was a little concerned about it and wish I didn't have to take it every day. If I don't though I start getting a new hole for my fistula and it starts getting infected again. I try not to take more than I have to. Never heard of the cortizone thing.
 
hey the cortizone shot was given for an abscess in my groin (probably not associated with crohns but may have been since i has having an obstruction at the time, also un dx'ed and brushed off).
There has to be a variety of medications available that aren't thought of.

I am on once daily Omeprazole 20mg (in the morning when i wake up), at night I take two 2.5mg of Chlord/Clidi5. This helps with throwing up in the morning.
I take a probiotic everyday and my gummy vitamins (so yummy).
I have been making quinwa with boiled chicken, ginger, and other holistic antiinflammatory foods. Sometimes if I am having a good day I will eat an activia but not very often as I am lactose.
I have been drinking alot of teas with honey. Some that are very good for you are Chuncapiedra (stone breaker) and Manzanilla/Chamomile. Im cuban so I have alot of remidies.

A few things I learned that were really interesting about my family history:
MY grandfather was dx'ed with prostate cancer last year. My aunt had UC and past away from cancer last year.
My great grandma (grandfathers mom from cuba) was a "healer". The town would go to her to cure their ailments. I thought this was pretty cool. I wish she was still alive, I'd give it a shot. lol. Thank you johnny and stupidbody for staying up to date with me on this forum. It makes me good to know people are waiting for my replies.
 
I just wanna give you all an update as for the past three days I have been having another rough bought of symptoms.

For the past three nights, including tonight, I have been in nearly agonizing pain in my lower right and left abdomen with the pain traveling upwards a little but mainly focused low near my illiac blades.
The first night this happened was truely terrible.. I was laying in bed waiting for my Librax to take effect and knock me the heck out like it usually does, but it was not making me tired at all. I was having alot of discomfort all day long prior and could not go to the bathroom. I noticed that this medicine has been keeping me from having as many bowel movements but then they stopped that day completely. well laying in bed when all of a sudden i find myself on my side, curled in the fetal position, grasping my stomach and screaming for help from my girlfriend or her mother who were sleeping.
They would not wake up, it was like i was living a nightmare. you know those weird horror stories where someone is being hurt and no matter how hard the yell no one will help...yeah that sucked. 5 hours in pain and could not move to get the phone to dial 911.
I woke up the next morning and had the most painful BM ever and went to work. I was not hungry so i did not eat much that day. The same story with the second night but Christina woke up this time and was able to get me some water and tylenol extra strength which didnt do much.
I went to work today again now im just sitting up because I havnt had a BM since yesterday morning. My stomach is so bloated and swollen and im having a hard time urinating as well. I took a shower and my legs started to go numb and then i could not stand any longer. I had to lower myself in the shower and wait until the tingling and numbness went away to stand again.
I have no idea what is going on and really dont wanna go to the ER again and have them tell me nothing is wrong like last time.
 
John-88 said:
Its nice to have soneone to talk to in person. You all seem so nice, I wish I knew you all in person. Thia forum is very supportive and educational.
As for the fevers I really dont know whats up with that. One question that has been on my mind is; when they do these tests and they come back inconclusive, what does that mean? What if none of my tests show anything yet I continue to have these symptoms?
Click to expand...

I am just reading through your post and don't know if anyone has answered you yet about your fever question. It sounds to me like the dreaded "night sweats". I don't regularly have them, unless I am on Prednisone, like now, and then MERCY, HONEY!
I think it's just your bodies way of trying to deal with the internal inflammation. Try to dress for it and keep the bedding in layers that can be kicked off and pulled up accordingly (sometimes "the night sweats" are also accompanied by "the chills"!) - for your comfort, but also your sleeping partners!

Have faith. Keep hope. Even when there seems to be very, very short supply of both (and I've been at the BOTTOM of both those barrels plenty of times! Recently, in fact! LOL!). If the doctors stone wall you (and some unfortunately will - I was told for almost 5 years that it was all in my head and that was AFTER a colonoscopy (which created my first fissure) and a barium scope) find another doctor. You will know you have the right one because s/he will never utter "it's all in your head" and WILL find out what is wrong with you and find the best meds to treat it. By the time I was diagnosed I was seeing my 11th or 12th doctor - my third GI specialist. I sat in his office and listed off my symptoms. I then waited for him to say what any of the others had said over the past 5 years, but he didn't. He said, "I believe you have Crohn's disease. We will have to perform a colonoscopy to confirm." I was reduced to tears.

If you have any time to read, try "When the Body Says No" by Gabor Mate. I just recently found it and it has been helpful for the stress component of auto-immune diseases.
 
John-88 said:
I have been making quinwa with boiled chicken, ginger, and other holistic antiinflammatory foods. Sometimes if I am having a good day I will eat an activia but not very often as I am lactose.
I have been drinking alot of teas with honey. Some that are very good for you are Chuncapiedra (stone breaker) and Manzanilla/Chamomile. Im cuban so I have alot of remidies.

Would love it if you could share some of your recipes and remidies. I am having such a hard time eating these days with my most recent flare. I don't want to eat. The whole process and end results are just too painful!

I keep on hand those meal replacement drinks (Boost/Ensure). When they go on sale, I buy 'em up in my favourite flavours. I like the ones in the plastic bottles best as opposed to the tins, which I feel make the drink taste tinny. On my really, really bad days it is pretty much full on liquid diet for me.
Click to expand...
 
John-88 said:
I just wanna give you all an update as for the past three days I have been having another rough bought of symptoms.

For the past three nights, including tonight, I have been in nearly agonizing pain in my lower right and left abdomen with the pain traveling upwards a little but mainly focused low near my illiac blades.
The first night this happened was truely terrible.. I was laying in bed waiting for my Librax to take effect and knock me the heck out like it usually does, but it was not making me tired at all. I was having alot of discomfort all day long prior and could not go to the bathroom. I noticed that this medicine has been keeping me from having as many bowel movements but then they stopped that day completely. well laying in bed when all of a sudden i find myself on my side, curled in the fetal position, grasping my stomach and screaming for help from my girlfriend or her mother who were sleeping.
They would not wake up, it was like i was living a nightmare. you know those weird horror stories where someone is being hurt and no matter how hard the yell no one will help...yeah that sucked. 5 hours in pain and could not move to get the phone to dial 911.
I woke up the next morning and had the most painful BM ever and went to work. I was not hungry so i did not eat much that day. The same story with the second night but Christina woke up this time and was able to get me some water and tylenol extra strength which didnt do much.
I went to work today again now im just sitting up because I havnt had a BM since yesterday morning. My stomach is so bloated and swollen and im having a hard time urinating as well. I took a shower and my legs started to go numb and then i could not stand any longer. I had to lower myself in the shower and wait until the tingling and numbness went away to stand again.
I have no idea what is going on and really dont wanna go to the ER again and have them tell me nothing is wrong like last time.
Click to expand...

hope you are okay!!!!!!
 
Thank you Verdure.

I am going back to see the GI on monday and will be telling him everything. The last time I was there I told him I was bleeding, he told me it was probably a hemeroid yet I was checked for a hemeroid while at the hospital durring the original incident and i did NOT have a hemmeroid. The doctor checked and I did have a hemmeroid but I believe I developed it after my colonoscopy prep and the colonoscopy.

I just feel very lost and sad. I feel like no one around me gets it except for my gf's cousin, who has crohns. I can't even talk to my best friend about this because I did and he told me it was probably nothing...
 
I can relate to the pain. I remember screaming (almost uncontrollably) and crying with bm most of the time during my flare last year. I got a really nasty hemorrhoid from it too. I think it was from pooping my guts out for months. It sucked. To be honest I still haven't completely gotten over it. I started seeing a counselor recently because of it (PTSD). I don't know why I tell you all this, but it's not nothing. It was the worst thing I've ever been through. I'm guessing it's one of the worst things you've been through. Does your gf or parents seem to understand what you're going through?

Are you having a lot of bleeding? I bled a lot at times from the severe inflammation. The hemorrhoids bled much less. I hate to hear you keep getting worse. I wonder what it takes before a GI will finally do something sometimes. I think it depends a lot on the dr.
 
I get night sweats on prednisone and when I'm in a flare I get the chills and nightsweats. Sorry you feel so lost. Try to get another doctor if you aren't 100% satisfied with their care.
 
Thats the thing, im not bleeding anymore. My stools are darker but not completely black. Some have red in them.
I have chills from fever and then when it breaks im sweating. The bm's hurt when im able to have one. I finally urinated.
Please everyone dont be afraid to be real with ur experiences. I'd rather know what to expect.
 
I can only try to empathize, reading your post really aggravates me. For my diag: I went in to the hospital, a doctor pushed on my stomach asking if it hurt (it didn't), was berated for coming in on a Sunday night, got blood drawn, realized my white count was astronomical, then I was put in a Cat Scan which revealed my terminal ileum had inflammed around my appendix. In the hospital, in the Cat Scan, onto the operation table, in the hospital bed with a friggin catheter up my junk and a morphine drip in my arm--in less than eight hours.

I'm thinking a Cat Scan is the only way to clear up such generalized (spanning the abdomen and possibly interfering with urination) symptoms.

I had no severe pain, or obvious symptoms other than a slight, week-long ache near my appendix--which I assumed was an infection which would be cleared up by a simple antibiotic-- and, come to think of it, I slept for nearly 18 hours out-of-nowhere and had one diarh bm days before I went in.

For me, safe foods are herbal teas, cooked carrots, butternut squash, plain kefir, vege juices (green Bolthouse/Very Vege Knudson), hard boiled eggs, and plantains (with coconut and cinnamon as someone suggested on the site). Drink lots of good water (a gallon a day of reverse osmosis, BPA free jugs cost 35 cents at my grocery). Eat small meals throughout the day.

Do deep breathing excercises (ex.: gradually lengthen and equal out inhales/exhales, pausing for 2 seconds between each, until reaching 9 seconds each in/exhale, for me) every time you get a brief minute or ten; maybe incorporate visualization techniques pertinent to you (imagine positive scenes in your life made vivid by imagining all your senses at work). Do some light yoga.

I've posted many times that the two probiotics, Jarrow EPS, and Jarrow IBS formulas, are my saviors (one each a day, at least) in addition to 4-5 grams of actual Omega 3s (more EPA than DHA) enteric coated fish oil (Source Naturals Ultra Potency Fish Oil: 4 caps a day, at least).

Keep on top of your registrar--that is something I shoulda/coulda/woulda done. I was diagnosed my first semester at a real university. I returned to classes with extra semesters of extensions--which I put off time and time again until I was three semesters in over my head. THOUSANDS of dollars worth of senseless avoidance.

Anyhow, talking to others openly about all your concerns is a very wise decision. Keep lines of communication open for second opinions. The initial stages of prognosis are disorienting for any disease I'm sure. Wanting to know more is the first step. Avoid sugars always (especially fake ones), and maybe don't mix different foods while flaring. For me, fasting for the better part of a day resets my system; however, I rarely have persistent symptoms. Dietary restrictions vary for everyone. Just live in the now, or in distractions, until you have some solid footing on which to base a course of action. We're all rooting for you!
 
Second update for the night sorry

I ate dinner around 7pm (only real meal) an hour later it came right back up.. I am very weak and yet im not tired. My evening medications just arent working for me any longer and it has only been 2 weeks on them. On monday if the doctor tells me the results show nothing, idk what im going to do. how can I get a solid diagnosis out of these people?
 
update:
I'm feeling the same as yesterday. I woke up and was nausious. I have not eatten until dinner. I had an omelete. I was unable to keep it down and I have still not had a BM. I am going to the hospital in north jersey where my parents live. I am really hoping for answers. I feel aweful anymore.
 
I'm glad you're heading to another doctor to be checked out. I'm so sorry you're feeling this bad :( I wish there was something I could do for you.

*hugs* to you.
 
David when I get better im headed to Florida for some much needed R&R. Thank you for the quick response. Im just so worried and in pain. I havent eatten in a few days. I'm hungry until i eat and throw up then I don't even wanna think of food.
 
What part of Florida are you heading to? Sounds to me like you've earned the R&R :)

When are you getting in to see the new doc?

And review for me... you've had a colonoscopy but what other tests? Any CT or endoscopy?
 
Hospital found elevated WBC count iliatic inflammation. Said infection. So im on cipro 500 mg, metronidazol 500 mg, tramadol 325mg every 6 hours, ondansetron 4mg every 4 hours instead of librax, and finally lactulose 10mg.
 
It could be but doesn't have to be. Finish both antibiotics no matter how bad the taste in your ur mouth from flagyl as this antibiotic combo will destroy any infection and get u on the road to good health. You were puking because of fever and infection. After the antibiotics you should have a colonoscopy to check for crohns/colitis. Probably just a nasty infection.
 
John-88 said:
Hello everyone,
Im not normally one to open up about my peraonal health problems but I felt I meeded to search out a discussion based site to maybe get some insight as to what others with ibd's think.
Im 23, and in college. Im just making it financially as a college student and then I started getting sick alot. It started with the vomitting and diarrhea. I was having alot of bm durring this time. I thought maybe I caught a bug somewhere since I work with the public. Two weeks went by and the symptoms were bad. The stomach cramps were terrible and the pain was sometimes enough to make me catch my breath. I dont like going to the doctors, even though im an aspiring PA. I let things slide for a littlw longer in hopes that it would correct itself. I had been spotting blood on my toilet paper and started to get anxious, but still too stuborn to see a doctor. About three weeks ago I had a major episode where I lost alot of blood durring my bm and then passed out. I tried seeing a doctor but no one could get me in fast enough.
Finally after seeing a doctor they gave me some suppoaitories and sent me on my way. Didnt ask questions or run any tests.. I was confused and scared. I did not know what this was or what was going on.
The second doctor though I was a liar and asked if I really had blood..
The third doctor I saw today would not help me and told me to go to the emergency room for cancer treatment. (i dont have cancer, I dont think)
I went to the emergency room after 3 weeks of no answers and their tests were inconclusive. The blood has stopped and the symptoms seems to be subsiding but I am worried. I cant keep missing class because I cant get off the toilet, or calling out of work because I feel like im going to pass out and am very weak. I cant keep sitting down for dinner wondering if what im about to eat is going to tear me up and give me stomach pains again. I go in to see the GI on thursday but with the symptoms lessening every day how am I supposed to explain this? Im very frustrated indeed, but more so just scared..
Click to expand...
I would sue them once you get to the bottom of this. No reputable doctor would allow you to go home without tests after reporting blood in stool. That's malpractice and you have needlessly suffered for how long? Trust me bro u will will be angry (should be) when u feel normal in a few days and could have taken a few pills months ago to avoid this. Seriously.

PS statute of limitations is 3 years. Find one of those ambulance chasers to sue. He has insurance and they will settle and he will continue to practice medicine even though he shouldn't. You will get some cash out of it. You suffered needlessly.
 
The tramadol doesnt seem to be working. The darvacete in tge,gospital worked in seconds. My mom is going to see about getting me some of that.
I think im sick of dictors in general. They all think they know better. I may have an infection from the colonoscopy says my dad. When they removed those polyps they did not give me antibiotics or paineds. I had the problems before the colonoscopy but who knows.

In my opinion. They found high WB count and an inflammed colon. What does that sound like?
 
Ur WBC is high from battling infection. You could have an infEction from food poison, person to person contact(oral fecal route) or IBD. No way to tell until after the antibiotics get rid of it. If you get better but still have "D" then you might have IBD. They found polyps? We're they benign? Blood loss could have been from polyps.

Did they do CT scan after colonoscopy? Pain after colonoscopy could be a sign of colon perforation but that would probably show up on the scan. Just follow all directions for after colonoscopy and report any symptoms . U should be good to go now.
 
John-88 said:
update:
The forst doctor I saw missed alot in his report about my colonoscopy, my new GI said there are things in the the report that were missing. He had also forgot to mention in his consult report that i had been missing school and work.
I specifically remember saying to him that I dont need a note for work but a note for school would be good to have just in case. Now they wont write a note stating to the school that i have not been able to attend class!!!!

On the side I called the registrar and she told me to bypass him since he doesn't seem like a good doctor. The funny thing is, The health services at the school highly recomended him and talked him up so much. Thank God the registrar, who is solely responsible for approving the medical leave, said she justs need doc. that I was seeing a doctor. She is going to approve it and she understands the circumstances.

As for the H2O2, I used to give that to my dog when he would get into my easter or halloween candy. It makes you throw up. I'm glad it can help with the infections but one thing to remember about H2O2. You use it initially when you cut you self to clean infection, but you usually stop using it after because H2O2 can scave off the new regenerating cells. Be careful how much you are taking it because any new cells regenerating from the infection may be removed. I don't know much about drinking it but I would assume that it works the same since your skin and the lining of your GI tract is made of epithelial cells. They are basically the same with some differences.
I hope it does work for you johnny.

Has anyone ever asked about cortizone shots at the sites of abscesses? I used to have one in my groin and a cortizone shot healed it in one weeks time. I dont know if this would help but they do give cortizone suppositories to reduce anal inflammation and hemmeroids. could this help with you guys? Can you tell I have my thinking cap on?
Click to expand...
Is this the same doctor that sent you home with suppositories or called you a liar? A lot of doctors suck. You have to shop around.
 
Did u get scanned after the colonoscopy? U need to find out ASAP. A perforated colon will take you out in no time. Are your doctors in top of this? Also, even with good doctors you must stay on top of this and make the phone calls and light a fire under their ass if you have to.
It's been what, 3 weeks since ur colonoscopy? What did they tell you about the colonoscopy causing problems? You need a Gastroenterolgist and a family doc on this to be sure you are getting the care you need. Don't panic but don't fuck around wether it's crohns or not your symptoms need immediate attention.
 
I just had a CT scan last night. They saw an infection where my polys were removed. Its just too much of a coincidence that inflammation polyps and infections are takibg plaxe in the same location of my colon.
 
This really all started last saturday after having to move 20 booths at work that probably weigh in at 200lbs a piece. Maybe I just pulled something, idk. I cant think anymore. Good night everyone and thanks for the support as always.
 
Im feeling a little better today. Im actually able to type. This week has been horrible. Im staying with my parents now. They are taking care of me. I dont think I have had this infection all this time. I have so many questions I wasnt able to ask the doctor..
 
These medicines are making me so nausious and sick. I don't know how anyone would want to be on cipro and flagyl... Does this happen to anyone else?
 
The doctor says its mesintary adenitis. He thinks my joint pain is unrelated. My stomach pain on the left side (descending colon) is unrelared to the infection as well. I asked what these things were from and he said it was probably nothing...

What the hell is the matter with these doctors?
 
Hey John. Just been reading thru ur posts. Sorry ur goin thru so much I know it's no fun at.. I'm have problems with bein nauseous all the time
Doc put me on a drug called odansetron. Works really well
Hope ya feel better soon
 
Try to be patient while this all gets sorted out. Too bad your governor has stalled the will of the people in NJ or you could use natures best anti nauseant: cannabis.
 
So true. And it's alot cheaper than odansetron !!!
Do u guys have compassion clubs there?? Don't know about there but here the compassion clubs will deal with u. Just need conformation of dx
Worth checkin out
 
I'm in Los Angeles CA. They have a weed shop every few km's. Obama's justice dept ordered them to shut down but most aren't going to. They filed suit in court.

New Jersey has a medical marijuana law approved a year ago and Gov Christie blocked it's implementation after the people put it on a ballot measure and it passed as state law.
 

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