Anyone develop Constipation while on Uceris or Budesonide?

[lsedels]

At my local Whole Foods, Canyon Bakehouse goods are in a GF freezer near the produce dept., not in the frozen food aisle.

OK, thanks!

[Leah]

HI Larry. It's good to hear that she is doing better.
When I started taking Budesonide, I had to taper the dose down to 6 mg. after one month. Then down to 3 mg. after 2 months. I stayed at 3mg. for another two months and then tapered slowly off of it over the last two months. The slower you taper, the better the result. If she is getting constipated, please don't wait for the doctor to lower the dose. Listen to her body. It's trying to tell you that she's taking too much!…. and don't let the doctor completely take her off of it cold turkey. She will most likely relapse big time.

Good luck with keeping her GF!
Leah

[lsedels]

HI Larry. It's good to hear that she is doing better.
When I started taking Budesonide, I had to taper the dose down to 6 mg. after one month. Then down to 3 mg. after 2 months. I stayed at 3mg. for another two months and then tapered slowly off of it over the last two months. The slower you taper, the better the result. If she is getting constipated, please don't wait for the doctor to lower the dose. Listen to her body. It's trying to tell you that she's taking too much!…. and don't let the doctor completely take her off of it cold turkey. She will most likely relapse big time.

Good luck with keeping her GF!
Leah

In fact, we saw him today. He said he is keeping her on Uceris 9mg for 3 months and doesn't want her to lower the dosage yet (we did mention she was somewhat constipated although it thus far seems to have resolved in response to a prune and some salad greens). He also said that after the 3 months, we are going to taper very very slowly in order to avoid a relapse. So that would seem to be in line with what you indicated. He was very reassuring and told her that she's going to be fine and can stop wearing diapers and (of course) eat whatever she wants while she's on the Uceris. We'll have to see what her thoughts are now on this and how far she will experiment, if at all. Thanks again.

[Leah]

She should NOT be eating anything she wants while on the drug. Doctors make me so angry sometimes
Leah

[carolm]

Larry, Leah is right. Tapering slowly is a good idea but that alone will not prevent a relapse. She'll relapse if the same sensitivities that caused the flare in the first place as still present in her system. I know I'm doing this: and I know you're aware of the food related issues. I would just feel remiss if I didn't clarify that.

Best of luck,
Carol

[lsedels]

Larry, Leah is right. Tapering slowly is a good idea but that alone will not prevent a relapse. She'll relapse if the same sensitivities that caused the flare in the first place as still present in her system. I know I'm doing this: and I know you're aware of the food related issues. I would just feel remiss if I didn't clarify that.

Best of luck,
Carol

I understand that, Carol. But this is now the 2nd gastro that has told her that and I hate to put it this was but you have to understand that multiple doctors have at least the same credibility as what I am telling her or reading to her from a group of people on the internet (no offense intended). I'm not sure what she's going to do yet (we have an appt with another gastro next week at a leading hospital in NYC), but it may just come down to seeing if she relapses when she comes off the drug. If she does, they will either have to put her back on it, or she will learn at that point that she must try modifications to her diet. I suspect she might do the Enterolab test sooner, but I'm not sure she will put the results into practice until she sees that she has to. Thank you again for understanding. As I said, I get what everyone here is saying. But you have to understand that this is a 91 y/o who is listening, but doesn't necessarily believe that this is what she must do quite yet and is quite overwhelmed by all of it. Just tonight, she asked me what IS gluten anyway ... and how is it possible that ice cream can have gluten in it if gluten is really related to wheat? It's quite overwhelming for her.

[JFR]

But you have to understand that this is a 91 y/o who is listening, but doesn't necessarily believe that this is what she must do quite yet and is quite overwhelmed by all of it. Just tonight, she asked me what IS gluten anyway ... and how is it possible that ice cream can have gluten in it if gluten is really related to wheat? It's quite overwhelming for her.

I truly get this Larry. My mother died nearly 3 years ago at age 94. A She had digestive problems that were diagnosed IBS. When she was merely in her upper 80's I tried to get her to change her diet, cut out gluten, but there was no way she would try it. The thought of changing her diet seemed to overwhelm her and no doctor had recommended it. Of course no doctor had recommended anything that really helped, but their knowledge/authority trumped mine. So she continued to eat her bagel with cream cheese every morning and all the other things she ingested that probably were doing her no good. I really feel for you. You are trying so hard to help her. I have come to understand how much my mother's cognition was compromised during her final years, even before it really became evident. That, added to her trust in the authority of doctors, destroyed any possibility of dietary change on her part. She did not have symptoms as severe as your mother's, so the motivation to change was less than your mother experiences. I hope your mother can figure it out for herself with your input. You are in a very difficult and frustrating position and I feel for you and for your mother.

Jean

[lsedels]

But you have to understand that this is a 91 y/o who is listening, but doesn't necessarily believe that this is what she must do quite yet and is quite overwhelmed by all of it. Just tonight, she asked me what IS gluten anyway ... and how is it possible that ice cream can have gluten in it if gluten is really related to wheat? It's quite overwhelming for her.

I truly get this Larry. My mother died nearly 3 years ago at age 94. A She had digestive problems that were diagnosed IBS. When she was merely in her upper 80's I tried to get her to change her diet, cut out gluten, but there was no way she would try it. The thought of changing her diet seemed to overwhelm her and no doctor had recommended it. Of course no doctor had recommended anything that really helped, but their knowledge/authority trumped mine. So she continued to eat her bagel with cream cheese every morning and all the other things she ingested that probably were doing her no good. I really feel for you. You are trying so hard to help her. I have come to understand how much my mother's cognition was compromised during her final years, even before it really became evident. That, added to her trust in the authority of doctors, destroyed any possibility of dietary change on her part. She did not have symptoms as severe as your mother's, so the motivation to change was less than your mother experiences. I hope your mother can figure it out for herself with your input. You are in a very difficult and frustrating position and I feel for you and for your mother.

Jean

Thanks, Jean. I get it. And I'm trying. My hope ... is that she won't relapse after coming off the drug and won't need to worry about any of this (there is that possibility, albeit 30%-40%). However, my near-term goal is to get her to do the Enterolab tests so that if she does relapse, perhaps she can just go back on Uceris for a month again, and she will be totally prepared based on the Enterolab results to try elimination of certain things from her diet for she she comes off it next time.

[JFR]

My hope ... is that she won't relapse after coming off the drug and won't need to worry about any of this (there is that possibility, albeit 30%-40%). However, my near-term goal is to get her to do the Enterolab tests so that if she does relapse, perhaps she can just go back on Uceris for a month again, and she will be totally prepared based on the Enterolab results to try elimination of certain things from her diet for she she comes off it next time.

I hope that happens for both you and your mother, either scenario.

Jean

[lsedels]

My hope ... is that she won't relapse after coming off the drug and won't need to worry about any of this (there is that possibility, albeit 30%-40%). However, my near-term goal is to get her to do the Enterolab tests so that if she does relapse, perhaps she can just go back on Uceris for a month again, and she will be totally prepared based on the Enterolab results to try elimination of certain things from her diet for she she comes off it next time.

I hope that happens for both you and your mother, either scenario.

Jean

Thanks!

[carolm]

Larry, on the upside, if it should happen that she does choose to change her diet, the research you've done will put you both W-A-Y ahead of the game. And that's worth a LOT.

Carol

[lsedels]

Larry, on the upside, if it should happen that she does choose to change her diet, the research you've done will put you both W-A-Y ahead of the game. And that's worth a LOT.

Carol

I totally agree, Carol. That is my intent. The only worry I have is if she relapses, how long it will take for her to "normalize" (whether via diet, or whether via restarting the Uceris) because she will likely be alone in Florida. But we shall see.