Ah, so its just Crohns!

Hello everyone! First off thanks for this forum! I have been reading it the last few days and found it a very helpful place! lots of good info here...learned more here then from my Doctors sadly! I am 21 and have a beautiful 3 month old daughter and an amazing girlfriend that has been very supportive through all this. so my story....Well, for the last 2 years I have had terrible stomach and lower back pain with diarrhea and going to often. At first I thought nothing of it and just ignored it. I would just take 800mg of ibuprofen every 4-6 hours and keep going. Well about 5 months ago it started getting to hard. I would wake up in the night from lower back pain and stomach pain, I would go 8 times a day weeks straight then not at all. I went to the clinic and explained everything. I did some research and actually thought I had crohns. I told them at the clinic that and they said it was possible but would do some test to rule out other things first. It was kind of frustrating to deal with. I told some of my family I thought I had crohns and they would say, "I think if it was that it would be much more painful..." :0 so they ran test and still had no idea. seemed like they were ready to just call it ibs and move along. Then I got a really cool doctor there that actually listen to me. He said ibs was possible but he wanted to do a colonoscopy to make sure, because crohns and UC were possible as well. He said he thought it was UC but wanted to be sure. SO I had an appt. set for Nov. 27 finally. Thanksgiving morning I woke up at 5 in the WORST pain I have ever felt. I rushed to the bathroom and went to find it was red colored! not just blood around it, but mixed with my stool. When i wiped it was just blood. (Im not being very modest...I figure eh we all have crohns, we've all been through this type of stuff am I right? lol) I was freaked out! I was trying to talk my self into just going back to sleep, taking some ibuprofen like usal and waiting the two days instead of going to the ER, but in the 10min I was thinking I went twice more, this time tho it was just blood, and lots. So I told the GF and I went. After the long wait and some amazing pain killers, I had a colonoscopy done. On my way back up to my room the dr comes and tells me I will be having an emergency surgery because they found a large growth in my intestines. :/ I was to drugged to even understand so I just said , eh ok sounds good. They ended up taking out a softball size growth, 2 ft. of intestine and my appendix. This time when I woke up I had the pictures next to my bed of the growth and I was so nervous! They were talking about possible cancer! the Doctor came in and explained everything to my family while I was past out and said he did not think it was cancer but crohns. The labs took 5 days to get and to relieve some tension. Not cancer...but crohns..:/ so, I am very new to crohns and looks like I found a good place to learn about my new disease! Looks like no more of my favorite foods for the most part, but if it keeps me from going 24/7 thats fine. So some questions if you guys dont mind... I am on asacol atm, anyone else take this? I am noticing that I sometimes have the pills in my stool, have an appt on tuesday with GI doctor to talk about this, but anyone else have this issue? Also...I still have diarrhea! Does it ever go away? Some days are worse then others, but will I ever have normal stool again? Is this a sign that the meds are not working as they should for me? Also since I will be asking about other possible medications, what are you guys on/tried in the past that you like and works well? Again, thanks for the all the advice and help here!

Hello....

I take it you're a Yakov Smirnov fan?

Your story is quite similar to mine. Diagnosed on the operating table!

Don't worry about the Asacol "shell casings." They are empty. There will be small cracks in the enteric coating and all the drug is actually absorbed in the part of the colon it's supposed to be. The pill is designed that way.

Welcome to the forum!

hello and Welcome!

Sounds like an interesting few months you have had! So glad it isn't cancer! Almost a relief to have Crohn's after that eh?

I can't help with the medication as I have never had that one. The Diarrhoea coule be the result of the parts of bowel removed. I am no expert here but apparabtly if you have some of the small intestine, specifically Ileum, taken out, you can have some absorbtion issues giving you D.

I hope you are recovering well and can stay away from the operating table for many, many years!

GoJohnnyGo said:

Hello....

I take it you're a Yakov Smirnov fan?

Your story is quite similar to mine. Diagnosed on the operating table!

Don't worry about the Asacol "shell casings." They are empty. There will be small cracks in the enteric coating and all the drug is actually absorbed in the part of the colon it's supposed to be. The pill is designed that way.

Welcome to the forum!

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Hello! lol, I could not help it. My first appt with my GI I found hillarious. He is a huge russian guy. walks in does not say a word and starts reading my folder...after about 5 min he says in a very heavy russian accent, "You may have what is called Crohns Disease...Ill be right back." and walked out..lol before the door was shut all the way I looked at my girlfriend and said a little to loud, "In Soviet Russia crohns has you!"

At first I was not worried because it was just the shell, but now it is the full pill, went from shell, to shell with some of the inner med, to now a full pill thats not breaking down. SO I think I may need something that is not delayed release is possible.

Thanks Shaz! I I never even thought about that to much. It was my Ileum I had taken out. I have read it causes you to not absorb B-12 as well as you should, and can cause a tingly feeling in the toes, witch I have..lol all things I plan to bring up with the Doctor on Tuesday. But did not even think about it also causeing irregual bowel movements as well. A side effect of asacol is diarrhea, but I had it after the surgery and before I went on asacol so I am sure its not from the medication.

GoJohnnyGo said:

Hello....



Your story is quite similar to mine. Diagnosed on the operating table!

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How did your like the ER visit? I hated mine...lol took them 4 hours to decide to med me and would I would explain just how much I was bleeding, and how often I just got, "well blood always looks like more when it hits the water." Then I finally got my own room I had the tray to catch my stool. When the nurse came in to right now the amount she just stopped and said, "Wow, ok." I asked, "Not normal right? ever seen anything like that before?" She was a really nice lady and just said, "No I have not hun, been a nurse for 12 years and never seen that, but its all ok now, we will fix you up." So my ER visit was not so good, but my actual hospital stay was nice. kind of like a vacation...hehe

Had the same problem with Asacol whole pill out other end not fun. didn't work for me. Im on pred. and bently and cipro for now. Good luck Tues.

:welcome: well...not sure how we are going to shorten your screen name ISRCHU - that is still a LOOONG name!!! :O) Love that you have a good sense of humor through all of this, it is very helpful. Ahhh, pain meds in the hospital. You know, probably a godsend for you so you wouldn't have had to think too much about the surgery! Glad it turned out not to be cancer. I was started out on Asacol - and had many many many pills end up in the toilet. Your transit time because of the diarrhea is making things pass through too quickly to be able to have them open up in your colon is why that is happening. Also, if you do not feel after a month or so of being on it that it is giving you any relief (or if it is making you worse - it made me worse) then *ask for something else*. It is a relatively mild medication and you really want to keep your disease under control - which means not having diarrhea 10 times a day. So, watch your symptoms and keep on top of the doctor about them. With just having surgery - you are at the point where you want to keep your bowel happy and quiet so your disease doesn't get back in the driver's seat so to speak. Good luck, glad you have found us and let us know if you have any more questions!

HI there Soviet, and welcome!
I am on Pentasa at the moment (cousin of Asacol) , just started and my 5th go around with it. It does help but mostly in the mild to mod stages. If you are having D, that will make it harder to work. Not sure what is available in your Country but cholestyramine should help you, and keep the meds in your system longer so it will work. Eating banana's can do the trick too. Congrats on your new daughter, what is here name???

funny how similar peoples story can be.

I had a Russian guy as one of the senior residents that saw me almost for every morning over a 10 day stay. Same briskness your describe. I think he got great pleasure in waking me at 7am with a big. "Ah good morning Mr. ******* . Sleeping well I see!"

I can also relate to the cancer thing. I had a large intra-abdominal abscess that looked like a nasty tumor on preliminary ultrasound and ct scan. Scared the heck out of me. Crohns was actually the good news! I need to keep reminding myself of that of late

Jettalady said:

HI there Soviet, and welcome!
I am on Pentasa at the moment (cousin of Asacol) , just started and my 5th go around with it. It does help but mostly in the mild to mod stages. If you are having D, that will make it harder to work. Not sure what is available in your Country but cholestyramine should help you, and keep the meds in your system longer so it will work. Eating banana's can do the trick too. Congrats on your new daughter, what is here name???

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Hey everyone and thanks for the post and help! I had to re register because I guess my other account seemed like spam....I mean all spammers love to sign up then right a post a mile long post about crohns then post the add links am I right? lol

Jett, thanks for the advice, as for the banana's ill pass..lol I have never liked them and they are the only food I WILL NOT eat. lol My little girls name is Maddison Grace Hunter. Ill have to post a picture, shes the most beautiful girl ever.

Kenny, same here. Everytime I start to feel a little selfish and think why the hell do I have crohns I just remind myself Im still alive and had it been cancer instead I could be counting my days instead..:/ My mothers family has a history of cancer, 4/5 of her siblings have had it....so I really thought, " man i got dealt a shitty hand" in the hospital. lol, ah Russians, yeah the guy I had I found very funny. Before we left my girlfriend asked, "If you dont mind me asking, where are you from?" and very quickly he replied, "Russia, unless you mean where I live, because then its fresno." simple reply....but add a russian accent and it becomes hilarious...maybe I just entertain easily. That could very well be it....

Thanks Peaches, and just call me Corey. I do need to try to get it under control. I have a problem that makes it worse, Im a smoker..:/ I know I know..its horrible!! I NEED to quit, I mean its a nasty habbit, bad for my health, bad for crohns..got a little one..but its hard. I feel like if I can quit tho it would make my crohns a lot easier to deal with..sometimes after I smoke I find my self running to the br....>< makes it not worth while anymore really..lol

Thanks pain, Ill bring those meds up to the doc when I see him.

Oh man, I really loved your name! LOL

Hi Notspam!! I love your daughters name, very feminine. I am sure she is a cutie pie!! Enjoy her every moment. Let us know your results to your doc appt and the baby picture!

hah, sorry you got deleted! It happens sometimes as we get a LOT of spammers and, while your name was funny, it did LOOK a bit spammish!

Glad you are still here Corey

Well, Im a little late for my up date. lol I quit taking the asacol shortly after I posted that and have not started any other meds and I felt great at first. Still no crohns problems other then the reg. BM and all that fun stuff. But for the last month or so I have been feeling very tired and weak. I went in to the clinic to get some labs done. I thought I had a b12 def. or maybe low iron. I had to tell the Dr to run the iron and b12 test, (not my reg Dr) She kept pushing on me that I was a diabetic and just wanted to run a A1C on me. The A1C came back normal, but my iron was off....but not low, it was very high, 211. with a few other abnormal test. My bud/creat lvl was low and so was my cholesterol that was 130. I figured this was form my diet, I only eat chicken and carbs. The dr I saw just said she was gonna rerun the test because it maybe a false...she had no clue what could cause it to be high, or how to treat it after asking her questions...I hate clinics...my blood pressure was 159/82 and they did not even say anything about that...I see my reg Dr tomorrow for crohns, I got copies of the lab results to show him. So, anyhone else with crohns run into this problem or is this something new to add to the list, like Hemochromatosis? And I need to post a picture of the little one. Shes growing SO fast. This picture is old and you cant see her blue eyes. lol her hair is longer now and she is FULL of energy, but this is still one of my fav pics of her.

regarding your D question in the first post - i dunno about anyone else but since my diagnosis and first flare i always always have the D even when i feel well. when i have a normal firm stool i get very excited. even when i am only going 3/4 times a day (a good day for me) stools are soft/runny.
welcome to the club, it sounds like you know how to advocate for yourself as a patient which is awesome and so necessary! be well!
jen

Hi Corey,

Awwww, your daughter is sooooo cute!

Were your iron levels, serum ferritin or iron stores levels? It's just that in Roo's case her B12 and folate etc were normal but her iron stores were low.

Roo has had the same op as you with the same amount of small bowel/ileum removed. In her case she has been left with short bowel syndrome so diarrhoea is a constant in her life, it has been 4 years now but she has been in remission since the op with a maintenance dose of Imuran. If this is still a problem for you have you tried Questran? I know it works in Roo's case but she doesn't like taking it (too unpalatable) so plans her eating around her day.

Hope you are getting on top of things and keep us posted!

Take care,
Dusty

Hey not spam welcome to the forum. Well it looks like you have the right attitude for this disease, strong! By the way are you located in Madera, California?

Welcome to the forum. PS I thought you were hilarious the way you described your doctor.

Jen, Yep, still have D all the time... I have accepted the fact that I prob will always have it. AND, like you said, the few times I do have a normal pre-crohns stool I get excited too...lol My girlfriend laughs at me for it...:/

Kat- To be honest Im not sure. It just says iron on it. I go tomorrow for the retest. Leave Tuesday for a 2 week vacation so will be awhile before I get the results.

Donna- Yep! And I work in fresno !

Re-welcome to the forum Corey. Your and Jen's stool descriptions match with EJ's. Almost always d and still several times a day. We're actually in the process now of finding out if something else needs to be done.

Glad you came back!!!

Hi, NotSpam, formerly known as SovietCrohnsSpammer. Welcome to the forum!

yes, it's a way of life. when D is the only symptom i can handle it. imodium works well for me but i got creeped out reading that it can cause something called Toxic Mega Colon (!!!!) (lol) but that probably happens when you don't go for like a month. which would never happen for me anyway.

NotSpam said:

Before we left my girlfriend asked, "If you dont mind me asking, where are you from?" and very quickly he replied, "Russia, unless you mean where I live, because then its fresno." simple reply....but add a russian accent and it becomes hilarious...maybe I just entertain easily. That could very well be it....

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ROTFLOL!! I totally get it as we have a lot of Russian friends. Russians are freakin' hilarious, and they don't even mean to be. They don't patronize people or pull any punches, that is for sure.

In fact, I was going to read something in russian to a guy we hang out with periodically, and I asked him beforehand if he was going to make fun of my accent (i was kindof teasing). He says, "I don't know, you haven't read it yet." Yep, I love 'em.

planetjen said:

yes, it's a way of life. when D is the only symptom i can handle it. imodium works well for me but i got creeped out reading that it can cause something called Toxic Mega Colon (!!!!) (lol) but that probably happens when you don't go for like a month. which would never happen for me anyway.

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What does that even mean? "Toxic Mega Colon" No kidding!!