I Finally Have A Name For The Pain

[CrohnsSucks]

After many years of suffering chronic diarreah and monthly bleeding periods that would last a day or two with LOTS of blood in the toilet, I finally went to the doctor and got tested. I was tested back 22 years ago when I was a teenager that they thought it was Crohns and I needed to take fiber. Well I didn't listen because the fiber would make me constipated and I didn't like it. Now I'm having a 3 week period of bleeding sometimes in my pants and had to go get it stopped. I'm also very tired and weak. Here's what they found.
1) I have internal and external hemmoroids and they are the sole source of the bleeding. Doc doesn't want to remove them in fear of that area will be more prone to Crohn's effects, so he's going to shrink them with a cream.
2) They found my pottassium, B12, iron, and cholesterol low. My cholesterol wasn't even close to being normal. I eat greasy, fried foods and I have better cholesterol than a marathon runner??
3) My colonoscopy showed my colon to be clean, no problems, but my ileum is ate up with Crohn's. His words were "out of control" to describe how bad it is when I asked.
4) They found my uric acid level very high and diagnosed gout which explained the pains I get sometimes in my foot.
So they put me on a whole bunch of pills. I have stopped bleeding 3 days ago, but am very very weak. They are giving me
20mg pottassium 1/day
40mg Uloric for gout 1/day
2mg Robinul 2/day
800mg Asacol HD 3/day
OTC Iron 1/day
OTC B12 complex liquid 1-3/day
OTC Caltrate with Vitamin D 2/day

I hope this gets better. Really worried that it may spread further through my small intestine. Don't go back to my GI doctor for 2 months. I may ask him if I should get a capsule endoscopy done to see how damaged my intestines really are, but I'm hoping it's confined to just that area. I don't get it either as I don't eat THAT much, yet I weigh 250lbs at 6 foot tall. Until I go back, I will do what they say this time high fiber diet and all and see what happens.

 

[ameslouise]

Hello and welcome!

I hope the current course of meds helps get things under c.ontrol and you get some relief from the bleeding and the pain. You will probably start to build up some strength now that the bleeding has stopped and you are on iron supplement.

Take it easy and get plenty of rest! Stop back and let us know how you are doing.

-Amy

 

[Nancy Lee]

Hello and welcome to the Forum!

Make yourself at home...ask questions, read or vent away..
someone is always around.

I'm just a little concerned about the high fiber diet...
I can barely eat fiber at all.
But it looks as though the doctors have a good handle on things..
try to rest as much as possible and you will get your strength back.

Welcoming hugs~Nancy

 

[Dexky]

Hey CS, I saw your other post about the scopes . I'm sorry you're going through so much but you've got a great attitude. Hope you stick around. Welcome and good luck!!

 

[Crohn's 35]

HI there, and welcome! I am with Nancy high fibre is very risky and can cause alot of bloat and discomfort. Low fiber and soluable fibre is best. I am surprised with all that is going on your doc didnt mention a resection. Let us know what your next appt is about. :hang:

 

[Crohns08]

Sorry to hear about the rough path you're on at the moment, CrohnsSucks. I'm also concerned about the high fiber diet. If you're so inflamed I would think that the fiber would make it worse right now, but that is just me. Good luck on the treatment and hopefully you can get things under control soon

 

[CrohnsSucks]

Wow! Thanks for the many responses already today! Thanks for having me here.
I too am very concerned about the high fiber thing. Seems everytime I take Citrucel or Metamucil or any of the no name brands, it turns out the same - extreme constipation that has me backed up for 2-3 days. Even worse was a time that I took it while I was under a tremendously stressful situation. I was backed up for almost 4 days. Thank goodness I was on vacation from work and was able to stay home miserable until things started to move again. Even laxatives seem to not help when it gets that bad. Only has happened that bad once and that was 2 years ago. I haven't taken any fiber either.
The Doc said that he saw a restriction, not sure where, and he opened it with a balloon device he said.
Still taking my meds and I'm gonna just see what happens tomorrow at work. Was told to take it easy. I do refrigeration and A/C work and it's July in South Mississippi so that is just not that easy. My problem during the day is I get so TIRED. I have had to pull over and sleep for a few minutes on the way to a job, especially after I have eaten. 15 minutes is enough and I wake back up, walk around the truck a few times until I feel Ok, and then I'm good for the rest of the trip. We have GPS on our trucks and thankfully the boss doesn't say anything about that or the numerous side trips I have to make to go to the bathroom. This would be hard to explain if they didn't know that I'm an honest family man they would think I was out all night partying or something.
Thanks for listening.

 

[DustyKat]

Hi CrohnsSucks and :welcome:

Good to see you here.

They found my pottassium, B12, iron, and cholesterol low. My cholesterol wasn't even close to being normal. I eat greasy, fried foods and I have better cholesterol than a marathon runner??

If your terminal ileum is the area affected and is as bad as the doctor suggests then you will absorb very little fat or B12, that's why your cholesterol is low. Did they not consider B12 injections instead of oral supplements. Perhaps the reason you are feeling so lethargic is a combination of chronic symptoms and low iron stores and this will be something that will take a time to turn around. Just also be aware that uric acid levels can be high in people that have active and extensive Crohn's in the ileum, I'm not suggesting that you don't have gout but that this may also explain the blood results.

I hope things turn around for you soon and you start to get some relief. Please keep us posted as to how you are going.

Take care,
Dusty

 

[Silvermoon]

Bang on, Dusty.....

Welcome to the site CS...sorry I am a little late in the welcome... :redface:

What is happening with the high uric levels is: because your small intestine (ileum) isn't working right, you are accumulating uric acid in the blood, which in turn, is causeing gout.... soooooo once we get your gut working right again, hopefully some of the pain in your foot/feet will go away.....

Your hemoglobin is going to pick up if you start taking iron (be careful with the iron..it may constipate you as it sounds like you might be prone to that...I would recommend ferrous gluconate...as it seems to be the least irritating...)..but it is going to take a while to bring your ferritin levels up...this is where the iron is stored....Until that comes up, you are going to feel like falling asleep at the drop of a hat....sounds like you have lost a lot of blood over a long period of time...so it could take awhile..... months maybe......

And same thing with the fatty foods.... as dusty said, your body is not absorbing the fat right now cause the part where fat/cholesterol is absorbed doesn't work too good right now.... YAY for cholesterol levels.... HOWEVER...gotta go somewhere, so it is causing some diarrhea, cramping in the lower part of your gut (the large intestine HATES grease and fat, so it is gonna try and get rid of it FAST!!

The fiber thing is tricky...the doc (I am thinking) wants you on a "high" fiber diet so the diarrhea doesn't irritate the hemmerhoids.... however, like you say, it can be constipating, and also, like the concerns others have brought up, it can be irritating to the inflammed part of your ileum.... . So you are kind of in a catch-22 dammed if you do...dammed if you don't....

I would suggest maybe smaller amounts of something like Metamucil? Start with like a quarter of the recommended dose...and slowly work your way up to something that feels comfortable...non-constipating but keeps your movements soft so you don't irritate your bottom....

Love the name, btw...lol cause it does suck...but glad you found us anyway....

Hope you find some relief soon.

 

[CrohnsSucks]

Boy oh boy Crohn's wasn't this hard on me last time 22 years ago! This time it HURTS!! And if that wasn't bad enough the Robinul is making me feel worse, but it's doing what it's supposed to do. Side effects are dry mouth, dry eyes, not enough sweat and just feeling lousy, but that could just be the Crohn's.
Tonight I don't know what happened. I ate half of a fried seafood platter. Never has caused problems before, eat it all the time. A few peanuts that i also eat with no usual problems and a couple glasses of water. I sat there and was feeling very good. Then all of a sudden I felt really lousy and got up and made it to the couch before crashing out. Checked my blood pressure and found it very low for my usual high running bp. It was 120/70 and I was running a fever of 100.4. My heart rate was real shallow and fast for me at 104. My eyes felt like they were going to pop out of my head. My finger joints started aching and I just couldn't make sense anymore. I took 2 ibuprofen to bring the fever down and stop the jackhammers behind my eyes. Then I stayed there on the couch asleep for about 4 hours. My faithful Dara was checking my bp and temp every 30 minutes and telling me that if I didn't start improving she was calling 911. It took a long time, but my fever is down to 99.3 now and the jackhammers are still there but they've stopped for now as long as I don't move. Can't go to sleep now and have to get up in a few hours to go to try to go to work again.
What the hell was this??!! I'm scheduled to go to the GP in 2 days. Hope I don't have to go through this again.

 

[Dexky]

Hey CS, one of the first things we were told by our GI was to NEVER give EJ Ibuprofen. Just a suggestion, but I don't know about that fried seafood platter until you get your flare under control. Have you checked out the food and diet section on here? It is full of tips for foods while in a flare. I know white rice and mashed potatoes doesn't sound as good as fried cod and hushpuppies but I think your gut would appreciate the break.

 

[ameslouise]

Hi CS - I hope you are feeling better and decided to call off of work! You need a break after a night like that!

I agree with Mark - probably good to lay off the fried foods and take it easy on your gut until things quiet down a bit! (Easier said than done... I had french fries wth breakfast the other day!)

Take care of yourself and try to get some rest! - Amy

 

[CrohnsSucks]

Yep, definetely had to call out to work today. Trip to the doctor this morning turned into day long stay at the hospital! Yuck! They ran another urinalysis and more bloodwork, gave me an IV drip for dehydration and watched me all day. They said my SERD (not sure if I got that right) was 16 last week at the colonoscopy and now is 23. Said I shouldn't be over 20. They found some bacteria growth in my urine this time and are going to culture it. In the meantime, I'm supposed to take a course of Cipro antibiotics and see what happens. They also gave me Zofan for naseau while I was there. Told the doctor about my depression issues that I've been getting over the last few weeks and he didn't seem to pay that any attention.
So now I'm back home settling in and am not supposed to work now until Monday. OMG! How am I going to pay the bills when I can't work? This is just getting more and more stressful and I just hope I can kick it this time before I lose my mind. Thanks for listening.

 

[CrohnsSucks]

Another as it happens update. Here we go again. Got home and sat down and typed my update, played a little with our black lab and then here comes the fever and bombed out feel. I haven't even taken my medication today because they had me in there sleeping so that's not it.
It seems eating is causing the problem 1-2 hours later. Last night it was about an hour later while still sitting at the table playing with the kids and then WHAMMM! Time to crash! Started the Cipro wheee let's see what that does to me now like this. I tried eating bannanas or fruit or a pop tart makes no difference. About time I get set up on the first job of the day I start cramping and just feeling lousy. Checking my ear with one of my service (not medical) IR thermometers I've read 98.8 which means I know I'm runnning a fever because my regular temp is 98.2 at the doctor and at home. I didn't eat not one thing else except the hospital food they brought me at 5 and 2 glasses of water since. It was your usual salad w/no dressing, ate the whole thing, sweet potatoes, corn, and a baked pork chop, and a roll. Gave the bannana to my favorite little monkey ;-) They watched me for an hour let me go and 1 more hour later here it is. I don't feel as bad as last night but I'm keeping my head cool with wet rags and just waiting and seeing.
Another funny thing is when my doctor came over to the hospital and saw me he looked at my bag and said how you feeling on the go juice? I said really not that much different, I had only been up a little bit. It said saline and dextrose on it and I took the whole bag. Didn't feel no sugar buzz goodness at all. Even drank a coke while I was there to see if I would feel better, nothing.
Doctor said I really messed up by not going last year when he told me to go get the colonoscopy and I got better and didn't go. I agreed and shamefully so. He said the Uloric is doing great though. My uric acid levels are down to 6! Yay!!! At least I'm getting something better.
Well going to fill up my camel hump with water. My kidneys feel like they been through hell with all the meds and then the ibuprofen last night to try to get my fever down. Hoping I want have to do that again tonight.

 

[CrohnsSucks]

Well been a rough one, but not feeling as bad after eating as I first did. I still run a low grade fever after eating, but don't bottom out and crash like I first was. Still taking it by day and seeing how it goes. Also have reduced the Robinul to half the dosage, but still twice a day. Cipro doesn't seem to be bad at all. So far, no problems with it. Hanging in there.

 

[CrohnsSucks]

Wow I can't believe it's been almost 6 weeks since my last update. What a rough ride it has been. I've had a colonoscopy and a upper GI and barium follow-though 2 days ago. There are large yellow and red areas all through my ileum seen in the scope and the follow through showed a pinched down ileum. Went through me very fast. I only stayed about 45 minutes or so before it had made it all the way to the blockage at my ileum and was squeezing past it. Was very cool to see the evil thing in live X-ray. Now I wait till my next visit in 4 weeks to discuss the options.
Been so weak and have lost 20 pounds since then. I am so depleted on B12 for some reason I am taking my monthly B12 shot almost weekly at first and now can go 2 weeks before I'm run down again and feeling like crap. I have to take my RX Iron and Pottasium and multivitamin pill everyday that I work or won't make it through a whole day. When I get home, I shower and crash on the bed. I may or may not eat dinner and the weekends are now for sleeping and trying to recharge for next week's work. The heat has been unbearable and I have switched to an all water with maybe a Coke every other day or so. I'm drinking 4 liters of water while I'm working and probably 3 liters when I'm not and very little to eat because everything hurts going through the blockage. They have taken me off the Robinul because it was causing me to many problems and replace it instead with Lomotil twice a day. It has slowed it down and have reduced it to once a day and now only go to the bathroom 3 or 4 times a day now. The pains still suck and they come like waves for hours shortly after finishing eating, but have gotten used to working through them.
We'll see what happens in 4 weeks.