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Crohn's Disease
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Posted 3/15/2009 6:42 AM (GMT 0)
Wells, where to start.

I was Diagnosed with Crohns when I was a few months away from turning 12 years old, I had experienced symtoms (Mainly blood loss, horrible stomach pain, Aenimia {Spelling that wrong xD}, Weight loss, Arthritis-like-pain, eye problems, That kind of thing. ) months before that, and had to be put on a ton of Steroids as I nearly died, which worked and I was Semi-Alright after that. I've had maybe 3 flare ups since then, One at the end of Grade 7 which I took Steroids for, one during 8th grade, and another near second semester of 9th grade. I was put on Imuran after that, as well as Asacol, Folic Acid, Iron, and a Calcium pill. I stopped taking my meds about a year ago, Since I've been in remission for almost 2 years now (I'm 17.) as they were starting to hurt more then help, and I haven't had a problem since. Don't know how that's working, but I'm relitively pain free at the moment so I'm happy.

That's not the best explanation of my past with Crohns and Meds, but I don't remember enough to go into depth. I mean, I've never payed much attention to the exact doses. I know I have to in the future, but yeah. Yay being a kid with Crohns? My mom's always dealed with it. =/


Now, my questions.
Recently, I feel like I've been really constipated. Which I know is common, but it worries me. It's almost a week sometimes before I have a solid bowel movement, and when I do the pain is pretty of there, and it's hardly what it should be. Is there something I should take to help it? Like I said, I'm not on any meds at the current moment, so I'm not sure. I've never been this constipated before, in the past it's always been I've had to go too /much/, and now it's like.. not at all? I find it strange.

Another thing, flatulence >.< . I've looked it up on this forum a lot, And from all the topics I see, you all say there's nothing you can do for it. It feels like I have a really bad case, but for all I know I have what's a common case =/. I'm a very /very/ self concious person. I was bullied a lot as a kid, which I can't complain too much about I geuss because most people have been. But with Crohns, all the things people used to bother me about have gotten so much worse, and I don't feel comfortable going anywhere sometimes. I have a boyfriend now, it's long distance at the moment but he's coming to visit me next month, and I'm to the point where I'm terrified to meet him because of my Disease. He knows the symtoms, he says he doesn't care, but /I/ Care. I don't want to run to the bathroom while we're in the middle of kissing, or be gassy or curl over in pain. I don't have to worry about the more serious things since I'm in remission at the moment, but more then anything the gassyness is worrying me a lot. He says he doesn't care and he loves me anyways, but it can stink really bad, and sometimes I just can't hold it in or it hurts really badly.. What can I do? How can I cope with that? Any married couples or people with a special someone want to share any tips? I appreciate any insight. It terrifies me, thinking of my future constantly being embarrased, although I know that's what it's going to be.



Now, my last topic. Pregnancy.
No, I don't plan on getting pregnant anytime soon, or anything like that. I pride myself on my morals, and even though I'm not religeous I believe in Sex /after/ marriage. Now with that explained, I want to know your opinions.

What's your take on pregnancy with Crohns? I've researched it a lot, I've always planned on adopting because I don't want to pass on pain. But I want to have at least one child of my own someday, maybe that's selfish, But I do. Everything I read seems to conflict. I've read blogs and medical information that say Being pregnant with Crohns can have some risks, such as miscarriage or certain defects if you're on meds.. but most of those are only if you expierience a flare during your pregnancy. I've read that right after your pregnancy, you expierience a horrible flare up, but then I also read that Pregnancy can be the most sickness-Free time of your life, and people have been fine for years after it. But that's not the biggest thing on my mind, I can deal with pain, what I've always worried about is passing down Crohns. Sure, they say what. 5-10% chance if only one parent is a carrier? But that's a big enough percent that it scares me. And even if my children don't get the disease, they then carry it don't they? Meaning I could be passing on pain for generations because I was selfish. So many mothers on this site have spoken of successful pregnancies.. which gives me hope. But I just don't know. Again, what are your opinions?


I hope everyone can give me some insight on these matters, I appreciate it greatly.
Thank you in Advance. ~
Posted 3/15/2009 9:03 AM (GMT 0)
Wow! To have a disease at such a young age. My heart goes out to you and all of the young people that suffer everyday with life long diseases.I am truly sorry for you. Just keep fighting and live your life and don't let this disease take you down. My only advise is that I believe that you should be on some kind of maintenance drug. The Crohns is still in there doing its evil thing even though you feel alright. I don't have any answers to your question, but I'm sure someone will come along that will. I wish you all the best in your life and remember live your life to its fullest.

Good luck!!

Wolfie
Posted 3/15/2009 9:16 AM (GMT 0)
Thanks for the support, I appreciate it. =]
Posted 3/15/2009 12:42 PM (GMT 0)
I can relate to your story and have a couple of things that I would like to comment on...even though I do not visit the forums all the time, my heart goes out to you.

I was diagnosed just over 2 years ago and have experienced the pain the hospital stays and looking for the right medications. I finally had my first bowel resection last December, of which I am still healing from (yes three months later and I have an open wound still!)

I have been married for almost ten years, and was mildly sick at the beginning of my marriage even though I didn't know why. I understand your embarrassment about the gassiness and the pain being around a significant other. For me it was very hard, especially when it came to being any type of intimate...But I think you will find with a loving and caring significant other you will both learn how to deal with it together. My husband has been so very supportive and understanding, he uses humor to calm me down and make me feel better about embarrassing situations. I truly believe if a person loves you like they say then you will be able to cope with the stresses having a chronic condition will bring. And by the way with others I have found nothing to help with the gas pain issues.

As for pregnancy...I have 4 beautiful daughters. While I was pregnant with each of them I was very very ill. I just thought it was pregnancy and how it effected me. Well with each subsequent pregnancy I got sicker and sicker. (my girls were born very close together and are now 7,5,4, and 3 ) After I had my last daughter and I realized I was still deathly sick that is when I really looked into my symptoms and found I had Crohns. During pregnancy there are so many medications that can not be taken, crohns patients are more likely to get dehydrated and be sicker because they can not take any maintenance medication. As I said, my crohns seemed to get worse with each pregnancy...but when I was pregnant it seemed easier to deal with the pain and the crohns symptoms, because I thought going through that for a baby was worth it. It was when I was not pregnant and was still sick that I got angry :)

I do worry constantly that my daughters might get this disease from me...Even though I am the only one in my family with CD. They all currently get excema flares on their skin, and that is auto-immune also. Yet I take pride it knowing about my disease and the symptoms and I keep a close eye on them, and think that with knowledge we are empowered...and if I should pass on my illness, at least they will get diagnosed sooner rather than later, unlike me going undiagnosed and living in pain for years.

Wow I have written a novel...I hope you might find my blabbing worth some sort of advice. :P

Angie
Posted 3/15/2009 1:37 PM (GMT 0)
Hi You say you are constipated ,have you tried a stool softner perhaps after your bowels start moving on a regular day to day thing you will not have as much gas... I follow lo roughage diet and avoid the gassy things.. good luck with your boyfriend and hope the visit goes good.. I eat a banana a day which helps me go and keeps the stool solid.. hope this helps some ..lol gail
Posted 3/15/2009 2:29 PM (GMT 0)
Hi and welcome to Healingwell.  You will find alot of supportive and friendly folks here trying to live with this darn disease too.  I would suggest that you start using stool softners.  I have to use them everynight because if I don't go even one day, it causes alot of pain and gas.  The stool softners are not laxatives, but help to soften up the stools to make them easier to pass.  I think if we can get you going again on a regular basis the gas will reduce.

Also, since you have all of sudden become more constipated I would suggest a visit with your GI.  You could be developing a stricture which could lead to an obstruction.  You really should be on some type of maintainence med at all times.  While you are going on living your life, the Crohns is still in there doing its damage on a microscopic level.  I did the same as you and quit my medications.  I did enjoy a almost 20 year remission, but it ended with an emergency resection (surgery) because I completely obstructed.  Fyi, I developed constipation alot about 5 years before the surgery.  Thats why I suggest a visit to your GI.

Wishing you good luck!

Hugs,

Gail Nanners* 

Posted 3/15/2009 9:46 PM (GMT 0)
Thank you everyone for the advice!<3

Violet, I too am the only person in my family with CD. The doctors don't know how I got it, no one in my family history had a chronic illness like this, or Anything even remotely close. Lucky us, Huh? Thanks for the story. =]

Now, Gachons and Nanners. Stool Softener? I've never heard of it before, is it over the counter? And Nanners, I'll deffinately take your advice to go see my GI, I just worry about my mom's reaction, I swear this disease stresses her out more then it does me. She's going through a divorce right now so it's rough.

Now that brings me to another question, What are Strictures, Fistulas and Obstructions exactly? I hear talk of them a lot, but I don't know exactly what they are. Sorry, I feel a bit dumb asking that but I want to be informed, my GI never braught them up before.
Posted 3/15/2009 10:43 PM (GMT 0)
Hi there, and welcome to HW. I just wrote you a long reply and lost it, so will keep this one shorter.

I must echo everything that Nanners said. We all understand why you took yourself off your meds, but I must stress that this is a very, very dangerous thing to do. One problem with taking yourself off your meds, especially with drugs like Imuran or Remicade, is that you risk reacting to them when restarting the meds and never being able to take them again. There is not an infinite supply of Crohn's meds, and it is important to retain the capacity to keep taking them for as long as possible. In other words, never mess around with the few medicines that you can take, because you may reallyneed them some day.

As Nanners said, you also risk your disease grumbling away, undetected, and building up a mass of scar tissue that can lead to narrowing of the bowel (a stricture) and maybe even a blockage. Think of your bowel as a garden hose. You know what would happen if you had a sudden narrowing in that hose: it simply wouldn't work well anymore. Now, imagine that you have dropped a pebble into the hose. It is very likely that the pebble would catch on the narrow area, causing water to back up behind it and eventually start running out the top. That is a blockage. The same thing can happen in the gut. A seed or nut or grape skin or something like that gets caught in the narrowing, and suddenly nothing can pass through the bowel anymore. It is incredibly painful, causes a number of very, very distressing symptoms, and often requires emergency surgery. You do not want this to happen to you if you can possibly help it.

I really do recommend going to see a gastro doctor as soon as you can. Yes, you may be feeling well now, but that constipation needs to be seen by a professional, and you will probably need to be put back on some maintenance meds.

Remember, feeling better does not mean that you are cured. This is a lifelong disease, and a very unpredictable one. The odds are that you will always need to be monitored by your doctors, and I think the sooner you see one now, the better.

All the best,

Ivy.
Posted 3/16/2009 12:58 AM (GMT 0)
Adoption is a wonderful and beautiful choice! But if you do decide to adopt and also have a biological child, please don't call the biological child "your own" when you are talking about them. I have seen this first hand....A bond between a child and their adoptive mother is just as strong as the bond between a bioligical child and his mother. Any child you might adopt is "your own".
Posted 3/16/2009 3:20 AM (GMT 0)
I am sorry you are so worried and have so much to deal with. Let me give you some advice from the point of view of a sassy 40 year old married lady.

Laughter is the best way to deal with worrying about flatulence, wrenching gut pains, bathroom visits of epic proportions, and whatever else life throws your way. Did you ever see the movie Next Saturday (I think its that one, or at least one of them) where the father comes out of the bathroom and says "I wouldn't go in there for about 20 minutes." LOL. Well, if you can't laugh, what are you going to do?

I actually had 2 pretty decent pregnancies, and my health actually improved when I was pregnant. I have two smart healthy boys and wouldn't trade them for the world. I got very sick after having my second kid, and that was when I was hospitalized and diagnosed with CD. (I believe I have had it since 16 though)

It takes 2 sets of genes to make a kid, so I just hope they get some good ones from their Dad's side. :-)

Anyway, take care of yourself and good luck with your boyfriend. He sounds nice. I bet you anything he feels nervous about meeting you also. :-)
Posted 3/16/2009 3:45 AM (GMT 0)
Ivy; That sounds horrible @.@. Yeah I'm deffinately not going off my meds again after that talk xD. I don't want to do any permenent harm to my system just for a bit less pain, And I'm sure the meds will even out. I'll talk to my GI as soon as I can.

Chronie; I agree entirely, I'd never want to alienate my child even if they are adopted. They're still my child, either way, and I'd love them. I think even if I do decide to, I'll adopt. I think it's a wonderful choice as well, and more people should.

Marianne: Thank you for your support, I'm sure as I get older I'll learn to deal with it more. Being an angsty teenager in a world that's none-too accepting is tough ;]. Good to hear that you boys are happy and healthy! I only hope my kids will be as lucky as yours some day<3.
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