Re: Crohn's advice - Melinda?

[Guest guest]

I'm falling asleep at the computer, so I'll make this a short reply for now. Is the doctor crazy? Crohn's can affect the entire digestive system - mouth to anus; if all the inflamed part is removed, it's likely to recur in another place - that's why surgery is the last resort. And the pregnancy is only the beginning. How is she going to rear that child when she's on IV nutrition just to live? I'm on Remicade, 6-MP, pred, Pentasa - all just to avoid surgery because the surgeons are afraid that if they remove any more of my intestine (half my small bowel is gone) I'll have to be on IV nutrition for the rest of my life! Is this doc suggesting that to this woman? What about when the inflammation returns in her throat, esophagus, gums? OK, guess this wasn't short. I have to say this is one of the most unbelievable things I've heard a doctor suggest.

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to " never have any Crohn's worries again!!! " she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

I'm falling asleep at the computer, so I'll make this a short reply for now. Is the doctor crazy? Crohn's can affect the entire digestive system - mouth to anus; if all the inflamed part is removed, it's likely to recur in another place - that's why surgery is the last resort. And the pregnancy is only the beginning. How is she going to rear that child when she's on IV nutrition just to live? I'm on Remicade, 6-MP, pred, Pentasa - all just to avoid surgery because the surgeons are afraid that if they remove any more of my intestine (half my small bowel is gone) I'll have to be on IV nutrition for the rest of my life! Is this doc suggesting that to this woman? What about when the inflammation returns in her throat, esophagus, gums? OK, guess this wasn't short. I have to say this is one of the most unbelievable things I've heard a doctor suggest.

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to " never have any Crohn's worries again!!! " she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

that is WAY to drastic.. crohns can be helped with diffrent meds, but taking out the bowel is a last resort.....

if you want and she joins give her my email addy, i know quite a few people wth crohns.... looks like she just had a realy bad oppinion done by a dr...

Kat

-----Original Message-----From: robyn bray Sent: July 2, 2003 2:11 PMTo: autoimmune-ills Subject: Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

That's a way drastic solution to Crohn's. I'm not a Crohn's person (I do have UC) but it was my understanding that it affects the small intestine more than the colon. And removing bowel clear up to the stomach would be worse than the Crohn's, IMO. Where's she supposed to absorb any nutrition? How's she going to have a baby depending on her for 9 months of nutrition when SHE isn't getting any?

There are lots of things to try, and new treatments coming out-- I wouldn't even consider such a drastic move unless I was dying. There are several people on this list that DO have Crohn's, so I should probably shut up and let them speak, but it just shocked me that he would suggest that.

Deb

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

That sounds ridiculous to me. I know of several women with Crohns who have several healthy children.---- Original Message -----

From: robyn bray

To: autoimmune-ills

Sent: Wednesday, July 02, 2003 5:11 PM

Subject: Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

That sounds ridiculous to me. I know of several women with Crohns who have several healthy children.---- Original Message -----

From: robyn bray

To: autoimmune-ills

Sent: Wednesday, July 02, 2003 5:11 PM

Subject: Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Robyn--Well, pregnancy does kick up autoimmune stuff, but you're right --that seems drastic. Especially since it sounds like the Doc is talking permanent colostomy! I've had a number--actually a fairly large number--of Crohn's patients who had temporary loop colostomies to rest the bowel and allow it to heal. I don't know how familiar you are with that, but instead of removing any of the bowel the surgeon creates a stoma and pulls a "loop" of the bowel to the surface, opens one side of the loop to the stoma and the patient wears the stoma bag, etc for a specified period of time. When the bowel has healed itself (meaning not that the Crohn's is gone, of course, just that the results of a flare have repaired) it is reversed and the person has a "normal" (for crohn's)bowel again.

If I were that girl I'd definitely find another GI Doc. Even if she has the bowel removed she's still going to have Crohn's---she just won't have to worry so much about knowing where each public toilet is en-route to wherever she's headed.

Kathy

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

I agree. My guess is that this Doc is primarily a surgeon.

(and isn't THAT a jaded view of the medical community!)

Kathy

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Robyn, there is no cure for Crohns. It can effect from the mouth to the anus, the whole GI tract. I'm drawing a blank, the sister disease to CD can be cured with the bowel and rectum removed and a bag used. This friend needs to seek another opinion in my opinion.

Shirley

I see my GI doc the 31st. I think my CD may be flaring. I had my IV infusion of steroids on 6/19 and after that I had hard stools that hurt! My rectum still hurts. But I am back to diarrhea. So I'm gonna talk to Dr. Landis and see what he says.

-- Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Robyn, there is no cure for Crohns. It can effect from the mouth to the anus, the whole GI tract. I'm drawing a blank, the sister disease to CD can be cured with the bowel and rectum removed and a bag used. This friend needs to seek another opinion in my opinion.

Shirley

I see my GI doc the 31st. I think my CD may be flaring. I had my IV infusion of steroids on 6/19 and after that I had hard stools that hurt! My rectum still hurts. But I am back to diarrhea. So I'm gonna talk to Dr. Landis and see what he says.

-- Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

You're thinking of Ulcerative Colitis. It only affects the large bowel & can be cured by removing the entire large intestine.

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

You're thinking of Ulcerative Colitis. It only affects the large bowel & can be cured by removing the entire large intestine.

Crohn's advice - Melinda?

I'm after some advice re Crohn's. Yesterday in the mall I was talking to a lady whose daughter has Crohn's. She is in her 20's. She has one small child but wants to fall pregnant again. I gather her first child was born before she was diagnosed. I think she was diagnosed just recently when she miscarried with another baby. Anyway, she has been advised by her gastro that in order to have another child and to "never have any Crohn's worries again!!!" she should have her bowel removed and have a colonoscopy bag inserted. Is that true??? I would have thought that was a fairly drastic step to take just to get pregnant. I know I hope never to have my bowel removed (although I know you can't plan this sort of thing). I certainly wouldn't ask to have it done.

I gave her our web site, but I've noticed that people here don't seem to be interested in internet advice - pity.

I'd just be interested in feedback from the group on this topic so that I can get back to her on it.

Thanks

Robyn

Yahoo! Mobile- Check & compose your email via SMS on your Telstra or Vodafone mobile. Please visit our website at:http://ACES_Autoimmune.tripod.com