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Crohn's Disease
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Posted 12/27/2011 11:56 PM (GMT 0)
Hi everybody,

As I have posted before, my daughter has perianal crohn's. She has SEVER constipation. She may go one or two weeks without having a bm. She takes laxatives, stool softeners, probiotics, miralax drinks plenty of water. Nothing works! For the last day, she said that she has just been sitting on the toilet FEELING like she has to go, but only a little comes out. I read on here one time that another lady was having the same symptoms- the feeling like you have to go, but can't- there was a word for it but I can't remember what it was. Anyway I brought that up to my daughter and she seems to think that the need to go comes from the laxatives, but wouldn't she have a bm? And the lady that I was thinking about used some kind of foam in her rear. Any suggestions for any of this? By the way, her abcess did go away.

Thank ya'll so much for being here!

Posted 12/28/2011 7:12 AM (GMT 0)
Your daughter & I are in the same situation. The word you are thinking of, by the way, is tenesmus. I know that OVER using laxatives is BAD. Your intestines will come dependent on them and the problem, constipation, will just get worse. Like with everything, you need to talk to her GI. My constipation apparently is causedby the swelling and scar tissue...When I have a BM that's not diarrhea it is thin and I can usually see undigested food in the thin, play dough looking poop(sorry to be grafic). I take miralax when I'm constipted(GI reccomended after I told him about my constipation issues and recent CT showed inflamation in rectum/perianal area). He said that you should be going to the bathroom everyday and if I'm not then I should take a dose of miralax or a few until I go. I am going to my GI in 2 days and I am going to bring this topic up & I'll share his thoughts/advice with you if ya want? I know how it feels to try every remedy and have it not work! Drinking loads of water offers me some relief but it doesn't help the urgency(tenesmus). My doctor prescribed me hydrocortisone suppositories that I took twice a day and WOAHH! That thing did wonders! It even lessened my rectal bleeding and urgency! Ask her GI about them. It does have steroids in them fyi. But it worked! I hope she gets some relief! I have been having bad urgency issues all day and am thinking of taking another dose of miralax...

(HUGS)!
Posted 12/28/2011 11:33 AM (GMT 0)
Keeping Faith,

Thanks for responding. Her dr. knows about the problem. He prescribed Miralax, but that doesn't help her either. Yes, if you would, let me know what your dr. tells you. Did the suppositories make you gain weight or be hungry? Did they straighten you out to be able to go to the bathroom or did they just help with the feeling of the urgency to go? Thank you for your help!

Post Edited (AngelsmamaDorseysdaughter) : 12/28/2011 4:38:01 AM (GMT-7)

Posted 12/28/2011 4:21 PM (GMT 0)
I'm leaving today to go see the GI (He's FAR out of town) thursday. I'll deffinately let you know! & I have lost about 85 pounds with this flare and was on 60 mg of oral prednisone PLUS the 25mg of the suppository and I still kept losing weight! My GI said that although it is a steroid, it isn't too high of a dose. So I doubt your daughter will gain any weight because for one thing, she isn't digesting the suppository like you do oral steroids. They did help me use the bathroom! Their were times when I was mildly constipated and the suppository didn't work but I also had rectal swelling so bad I cried when I inserted the small suppository but I did feel the swelling go down after an hour! 90% of the time it kept my bowel movements regulated :) I accidently forgot to take it once before school a few months ago and all day I was mierable. Then when I got home and took it I felt relief in minutes and within the hour had a bowel movement. I was going 4 times a day when taking the suppository which was a HUGE difference from my once a week! I have been on steroids so long that I can't really take the suppositories again because I'm so young and already have almost every pred side affect.

Tell your daughter not to worry about the weight gain or hunger because all the suppository is doing is going up her rectum to treat the inflammation right there in the rectum(and possibly sigmoid part of the colon). At least, that's how it's been explained to me by many doctors and nurses.
Posted 12/28/2011 8:07 PM (GMT 0)
Thank you KeepingFaith,

I don't know why her Dr. hasn't said something about this medicine! I will tell her to call him and see if he will prescribe it. It sure won't hurt to try! How old are you? She is 27. I hope you get some relief. She's only been on steroids once and that was enough. She gained so much weight, she was unrecognizable! She didn't even look like herself. She has been on Remicade and Humira. Her Dr. is about 2 hours away. It's sad to have to drive so far to get a good Dr.

Posted 12/28/2011 8:45 PM (GMT 0)
It is sad to have to drive out of your way to see a good GI but, as you and her know, ya gotta do what you gotta do! I'm almost 16. So I'm fairly young. I've seen younger members but I'm deffinately a 'baby' on here ;) All of my other GI's never told me about the suppositories either. Even after I explained to them about the rectal bleeing and inflammation. It took me getting admitted into the hospital and staying there for a few weeks for my GI to reccomend the suppositories. I used them for about a month and a half. I hope she never has to go on Prednisone again! It's an evil, evil drug.... I hae to get my Reicade infusion thursday too and I usually am pretty out of it for that day so if I don't get back to you thursday I will friday or saturday! Nice to know of another Crohnie that has simmilar problems. :-)
Posted 12/28/2011 10:08 PM (GMT 0)
Oh, bless your heart! You are SO young to be going through this. My daughter was about 14 when she started having the constipation. At I believe 18, she had a blockage and didn't poo poo for a month. Her regular Dr. referred her to a surgeon in Auburn about an hour away from home. He did the surgery and told us that he thought she had crohns and told us that she needed a GI. I did research and found one in Birmingham, two hours away from home. Then she had an abcess and fistula. She had to see another surgeon which the GI in Birmingham recommended. He said that the first surgeon in Auburn had botched the blockage surgery up bad. He cut through spincter muscles and everything! So after that, I said no more Dr.s in smaller towns. Remicade did good for her untill she developed alergies to it. Now she's on Humira which is good too, but she developed another abcess. The GI prescribed antibiotics for it and it went away! Thank God cause if it didn't she was going to have to up her dosage.

I hope everything goes good for you tomorrow. Just write back when you can, no hurry! Thank you so much for your help.

Posted 12/29/2011 9:17 PM (GMT 0)
AngelsmamaDorseysdaughter

I hate to hear all that is going on with your daughter but it's nice to see someone from Bama on here

I'm in B'ham and recently changed GI's - it has been a life changer for me

I had my first Remicade treatment last week at Brookwood Hospital and discovered that over 1/2 the people there were from Montgomery

They basically said the same thing - they had exhausted all the GI's in Mont. and had to come to B'ham for proper treatment

I still use the same GI practice but a different doctor and I love the one I have now

I discovered that I am very fortunate to live in B'ham and not to have to commute from smaller towns in state

I hope your daughter gets the help she needs

I have a wonderful Colon/Rectal Surgeon that helped me tremendously - he is of course here in B'ham but he is the one who told me that my problems were Crohn's based and not UC, which led me to my new GI and now onto Remicade treatments

If you ever want the name of the practices I use, I would be glad to privately e-mail them to you

I hope you and your family have a Happy New Year
Posted 12/30/2011 12:06 AM (GMT 0)
Hi,

Bama girl,

Glad to see you here! We are from Roanoke. If you've ever heard of Lake Wedowee, we are about 30 min. south. My daughter uses a Dr. at B'ham Gast. Her surgeon is in B'ham also. My e-mail is [email protected]. We can compare Dr.s. Lol. I also saw another lady on here today that is from the south somewhere. Her name is DixieJo. I thought that was funny cause I'm from the south and my name is Jo also. I hope you have a great New Year's also!

Posted 12/30/2011 9:39 PM (GMT 0)
OH MY GOSH! We all might have GI's in the same practice! :) That's where my GI is, in Birmingham! I love him to death! He gets the job done! How weird is that?!?! Apparently the South is as good as it gets!

Anyways, I went to the GI and brought up the perianal issues, constipation etc. and he seemed a lot more worried about how my disease has gotten a lot worse but he did answer my questions of course. He prescibed me more hydrocortisone suppositiories and he said the reason some GI's don't prescribe them to certain patients(he was reluctant to prescribe them to me again but it's the only med that helps!) is because the steroid is great at treating the inflammation but it can thin the skin insie the rectum/colon which can cause an increase in rectal bleeding as the stool starts to come out(especially when constipated). He also gave me some of this clear gel stuff to put on the perianal area and my inflammation has gone down some! It has lidocaine in it so it feels good when I put it on :)
Posted 12/30/2011 9:56 PM (GMT 0)
Girl, are you from Al. too? This is too funny! Lol. Maybe that's why he didn't want to prescribe it for her cause she bleeds alot when she poops! Are you feeling better?

 

Posted 12/30/2011 10:06 PM (GMT 0)
Yes I am from Alabama :) That's why he was reluctant to give it to me because my rectal bleeding has gotten worse and he's kind of experimenting to see if it's from the suppository or the disease its self just being...well its self. Lol. I'm not feeling better actually...The GI appointment didn't go well. He thinks I've failed Remicade and I keep having delayed reactions...I'm about to post a thread now or tonight about the whole thing. I hope your daughter gets better! It's so weird how we're from Alabama! Imagine that!
Posted 12/30/2011 10:40 PM (GMT 0)
That is to funny that we all see docs in B'ham - Who knows we may all end up seeing each other at some point - my Remicade treatments are done at Brookwood Hospital -GI is at the Pilot Building over by St Vincent's East
Posted 12/30/2011 10:58 PM (GMT 0)
What part of Al. are ya'll from? KeepingFaith, don't panic. There's always other stuff. Angel is on Humira now, every other week. She was on Remicade. I hope both you and BamaGirl get better!
Posted 12/31/2011 1:08 AM (GMT 0)
I'm from Birmingham
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