Need info

[Marina]

In Dec.2010 I wound up in the hosp with severe abdominal pain. Had an emergency surgery because I had ileitis and the infection from it destroyed my filopian tubes and had to be removed. I was put on intro antibiotics for two weeks. When I went to the dr to take out the pickline, they did a ct scan to make sure the infection was gone and found that not only was it not done, it was worse. Went into hospital immediately and was there for a week. I had severe ileitis ! GI dr did endoscopy/colonoscopy and couldn't even get the scope down because the intestine was so inflamed. He put me on a strong dose of Entercort (steroid) and sent me home. I was on Entercort for a few month and the dr wanted to put me on Remicade infusions every 6 weeks indefinite. Would not give me a clear reason why other than it's gonna make me feel better. It was time to get a second opinion. I found another GI and he did a colonoscopy,ct scan and a berium test. It showed that I had a foot long stricture, but he wasn't eager to operate, instead kept me on Entercort and wanted to put me on 6 mp.....before I could go on 6mp, I had to have a TB test which came back positive ! So now I have to stay on Entercort and take TB medication for 9 month before I can take 6mp.
I developed this terrible cough due to TB med, and terrible cramping in my upper stomach. The cramping is so intense that it breaks me out in cold sweats. GI thinks it's IBS, but the cramps only last about a minute at a time and usually when I'm eating. They come on a few times a day, everyday. Everything I read about crohns is about going to the bathroom a lot. I'm the opposite, I never have diarrhoea .......I'm always constipated and in pain from that too. I take miralax, but that only helps a little. I live in constant pain. I don't know what else to do or try.
If anyone has a similar story , or hints re constipation and upper stomach pains, I would really appreciate it.

 

[dragonfly]

i have crohns and have been through something similar. whenever i ate my belly would cramp up and hurt so badly i just stopped eating. turns out i had a blockage. you would think from everything you read crohns, it is all about never staying out the bathroom again i have the problem too that sometimes i cannot go for nothing. during them times i try to drink as much water as i possibly can and as crazy as it sounds i will eat anything i know i should not...salsa pizza anything red and spicy works for me. and i had to be careful with taking anything to help me go because then id have to start taking something to stop me from going after i started! i always used a heating pad across my stomach, it seemed to help me alot, maybe thats something you could try as well? i am so sorry that you are going through this, i wish you the best.

 

[lookame]

The stricture is probably causing your consitpation. Consitipation is also common with crohns, and by the way you describe it being in your ilium would be the reason why you don;t have diarreah. We typically have diarreah because the colon is where water is absorbed, if you have inflammation in your colon it becomes difficult for your body to form stool and absorb water(because of the inflammation). When your disease is located higher up in the digestive track say your small intestine which vitamins are absorbed your body has a hard time absorbing vitamins making many deficiant in vitamin d and such. Other things like strictures or severe inflammation can cause you to be constipated since stool is backed up behind the closed wall/area. When it gets caught in these sections the stool will stay there until it gets so backed up it can eventually push through or it becomes so backed up that fecal matter eventually gets into your stomache or even worse you start vometting your feces. Obviously I don;t think your so bad that fecal matter is backing up into your stomache, your more backed up until it can push through(you still have an opening large enough for it to push through)

I know that was a lot of info and I probably worded it confusing or I scared you but with the steroids hopefully they can get your inflammation down to a comfortable level. I don;t know a whole lot about remecaid or humera but I'm on 6mp now. Your GI should schedual a prelim blood test to test your capacity for being able to metabolize the drug. It's a low dose of chemo used to treat lukemia and it does that by suppressing your immune system and the ability to produce white blood cells. It gets broken down by the liver and is hard on the kidneys so when drinking be sure to not get wasted(lol) The label states to not drink alcohol but I have a couple of drinks now and then. Anyway if your given to high of a dose it can cause you to go into renal failure(though unlikely if he does his homework before giving it to you) you may get colds or infections easier and they may last longer but once your system adjusts to the change and medicine you'll feel better. I find my bloods went a tad wacky but then evened out. He wants you to be on the TB drugs before going on 6mp because 6mp can make it harder to fight off infections. Once on 6mp you'll go in for routine blood tests to check the levels of the medicine in your system, white cell counts and sometimes other cell counts (platelets, red cells ect). Your dose is based on how much you weigh and your ability to metabolize the drug(I'm a moderate metabolizer so I was started off at 25 mgs to be safe, if I was given 50mgs we risked that I could go into renal failure or have an adverse reaction, once we found out that I could handle more of the drug I was raised to 50mgs and everything is fine)

Good luck

 

[xJillx]

Hi Marina and welcome! Yes, constipation is a symptom of Crohn's, though D is usually more common. To be honest, I don't usually have D either unless I am doing really, really poorly.

So, are you just taking Entocort for treatment at this time? I know you can't start 6-MP or the like until the TB is settled out, but has your doctor suggested an anti-inflammatory such as Lialda or Pentasa. That would at least be something else that could help the Entocort battle the Crohn's.

 

[Marina]

i have crohns and have been through something similar. whenever i ate my belly would cramp up and hurt so badly i just stopped eating. turns out i had a blockage. you would think from everything you read crohns, it is all about never staying out the bathroom again i have the problem too that sometimes i cannot go for nothing. during them times i try to drink as much water as i possibly can and as crazy as it sounds i will eat anything i know i should not...salsa pizza anything red and spicy works for me. and i had to be careful with taking anything to help me go because then id have to start taking something to stop me from going after i started! i always used a heating pad across my stomach, it seemed to help me alot, maybe thats something you could try as well? i am so sorry that you are going through this, i wish you the best.

Heating pad is a great idea, I will try that. Thank you :smile:

 

[Marina]

Hi Marina and welcome! Yes, constipation is a symptom of Crohn's, though D is usually more common. To be honest, I don't usually have D either unless I am doing really, really poorly.

So, are you just taking Entocort for treatment at this time? I know you can't start 6-MP or the like until the TB is settled out, but has your doctor suggested an anti-inflammatory such as Lialda or Pentasa. That would at least be something else that could help the Entocort battle the Crohn's.

I take Entocort, TB med and vitamin D.......the dr has not suggested an anti-inflammatory , but I see him next week and will ask him about it. Thank you :smile:

 

[Marina]

The stricture is probably causing your consitpation. Consitipation is also common with crohns, and by the way you describe it being in your ilium would be the reason why you don;t have diarreah. We typically have diarreah because the colon is where water is absorbed, if you have inflammation in your colon it becomes difficult for your body to form stool and absorb water(because of the inflammation). When your disease is located higher up in the digestive track say your small intestine which vitamins are absorbed your body has a hard time absorbing vitamins making many deficiant in vitamin d and such. Other things like strictures or severe inflammation can cause you to be constipated since stool is backed up behind the closed wall/area. When it gets caught in these sections the stool will stay there until it gets so backed up it can eventually push through or it becomes so backed up that fecal matter eventually gets into your stomache or even worse you start vometting your feces. Obviously I don;t think your so bad that fecal matter is backing up into your stomache, your more backed up until it can push through(you still have an opening large enough for it to push through)

I know that was a lot of info and I probably worded it confusing or I scared you but with the steroids hopefully they can get your inflammation down to a comfortable level. I don;t know a whole lot about remecaid or humera but I'm on 6mp now. Your GI should schedual a prelim blood test to test your capacity for being able to metabolize the drug. It's a low dose of chemo used to treat lukemia and it does that by suppressing your immune system and the ability to produce white blood cells. It gets broken down by the liver and is hard on the kidneys so when drinking be sure to not get wasted(lol) The label states to not drink alcohol but I have a couple of drinks now and then. Anyway if your given to high of a dose it can cause you to go into renal failure(though unlikely if he does his homework before giving it to you) you may get colds or infections easier and they may last longer but once your system adjusts to the change and medicine you'll feel better. I find my bloods went a tad wacky but then evened out. He wants you to be on the TB drugs before going on 6mp because 6mp can make it harder to fight off infections. Once on 6mp you'll go in for routine blood tests to check the levels of the medicine in your system, white cell counts and sometimes other cell counts (platelets, red cells ect). Your dose is based on how much you weigh and your ability to metabolize the drug(I'm a moderate metabolizer so I was started off at 25 mgs to be safe, if I was given 50mgs we risked that I could go into renal failure or have an adverse reaction, once we found out that I could handle more of the drug I was raised to 50mgs and everything is fine)

Good luck

It is a lot of info and no I'm not confused Lol
Thank you for taking your time to inform me, I really appreciate it :smile: