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I haven't been on the forum recently and I decided today to post something I have been wondering about.  I was diagnosed in April 2010 with mild(?) Crohn's.  The GI who did my Upper and Lower Colonoscopy and Endoscopy wanted me to take the ASA-5 (Pentasa) medication.  I chose to go a route of diet modification going gluten free, taking probiotics, fish oil, liquid iron and multivitamins and the main symptoms which were apthous ulcers(mouth sores) and extreme fatigue and not being about to have "movements" were for the most part alleviated with these changes.  Now, almost two years later, I have noticed my abdominal area fuller (and granted this could be due to the G-free foods that are more caloric.)  The morning's are most rough for me as I MUST have a movement before I go to work etc..I have to wake up at least two hours earlier to ease into my day.  The slightest stress or pushing of a schedule make me not be able to have "movement", which is really uncomfortable. My reason for posting is to see what you all have to say about this symptom of "bloating" outside of the normal menstrual cycle each month and  is this something to be concerned with as I did not go on the Pentasa medication due to the side effects that would have been worse?  Thank you for sharing your experiences! Any information would be helpful however I would rather stay medication free! :)

 Reply posted for sunnysd.

stay bloated.......some days look like almost full term....others not quite that bad...today is a rough day......lots of pain..

Constipation has always been a big concern for me.  I am always afraid of having a blockage as I have a stricture -  don't eat stringy fiber-rich foods or nuts and beans.  It is weird but fiber constipates me more.  And having a BM used to mean I had to push hard - it just didn't seem to move smoothly down the bowel.  Like you any bit of "rush" in my schedule gave possibility to not having a movement for the day and I was always afraid of going without one.  I now take a drug called "Amitiza" twice a day and it really helps make me regular.  I don't worry now about not going because it really helps regulate me.  Ask your doctor about Amitiza - it might help you and it is low on side effects.  I hope this helps!

 Reply posted for maria4981.

My stomach got so bloated that once I couldn't fit into any of my clothes! I had to wear those awful sweatpants and a sweatshirt the entire day hahaha! Movement really helps, I agree. Kickstarting my digestive system with exercise seems to alleviate a lot of the cramping and do good things for my system, although it's no panacea.

LOS SALUDO AFECTUOSAMENTE ,ESTOY EMOCIONADA PUES NUNCA PUDE COMPARTIR MI ENFERMEDAD CON NADIE ,PUES NO LA ENTIEMDEN Y BUENO TODO HA SIDO MUY TRISTE Y DURO ,
EN POCAS PALABRAS ME SIENTO ALIVIADA AL LEER SUS COMENTARIOS YO TENGO MIEDO VIVO CON COLITIS ULCERATIVA INESPECIFICA HACE 10 AÑOS,TUVE UNA COLOSTOMIA DOS AÑOS Y MI PADRE MURIO EL AÑO PASADO DE CANCER DE COLON Y LUEGO GENERALISADO .
TUVE QUE CAMBIAR MIS HAVITOS DE TRABAJO Y VIDA ,ESTO AFECTO  MI FAMILIA TAMBIEN ,SIEMPRE TENGO CANSANCIO EXTREMO ,LA SEGURIDAD SOCIAL EN MI PAIS NO CUBRE ESTA ENFERMEDAD Y ES MAS EN PERU LA TRATAN POCO ,ES MUY COSTOSA ,NO PUEDO DORMIR Y ESTO ME AFECTA TERRIBLEMENTE ,MI VIDA INTIMA PUES ES NULA ,TENGO EL VIENTRE SIEMPRE HINCHADO ,PESE A LAS DIARRES PUES TENGO UN FUERTE SOBREPESO Y DOLORES CONSTANTES DE HUESOS ,TENGO MIEDO ,NO SE QUE DIETAS SEGUIR ,TOMO MESALASINA HACE 10 AÑOS AVECES DOSIS MUY ALTAS CUANDO ESTOY CRONICA Y CUANDO NO TOMO SOLO UNA PASTILLA PERO A LOS TRES MESES ME SIENTO MEJOR LAS DEJO Y ME VUELVE CON FUERZA ,SE ME CAE EL CABELLO MI PIEL ES UN DESASTRE ,SIEMPRE ESTOY TRISTE AUNQUE NO LO DEMUESTRO ,Y BUENO LLORO EN EL BAÑO DE CASA ,NO SE QUE HACER SI ALGUIEN ME PUEDE AYUDAR DECIR ALGO NO LO SE GRACIAS ,LUCRECIA.

 Reply posted for sunnysd.

Fellow food baby friends! Haha, sorry, that's just the term my another crohn's friend and I use to describe how after we eat we always look pregnant. I used to be really embarrassed because my stomach is HUGE after I eat. I once was trying on my clothes for work after I ate dinner one night to decide what suit to wear to a meeting and none of them fit :(  . . .but they fit the morning after. I'm not sure what causes it, maybe a gas build-up? But don't worry, you're not alone! 
As for the pentasa . . . honestly I don't think it will change the bloating issue, as I'm on meds and it doesn't. But I would be careful about not taking meds, it could lead to problems down the line. I stopped taking mesalamine, and didn't take anything, and I got hit hard with a flare. As for the side effects, don't let them scare you, have you ever seen the amount of side effects for tylenol and advil? Please don't think I'm trying to pressure you into taking drugs, I believe that everyone should make the decision that is right for them. I just think you should discuss with your doc about the side effects and reasons for not wanting to take the drug and have your doc explain his/her reasoning or give you assurance. Maybe your doc could explain it better? Either way, hope you feel better! :)

 Reply posted for sunnysd.

Hi all,

I also am a sufferer of the abdominal "bloat".  I bloat so bad because I have pyloric stenosis.  Pretty much the sphincter where the food empties from my stomach into my instestines gets inflammed from my Crohn's Disease.  To relieve this problem I have to get scoped once a week, during these scopes my GI doc injects Kenolog into my pylorus.  It helps for only about a week.  This could be what is wrong with you all.

 Reply posted for sunnysd.

I'm all too familiar with the bloat.  I've been offered a seat on the subway and asked when I'm due (even though I've never been pregnant).  I think, for me anyway, it's IBS.  I've been in remission for a while now but still suffer the bloat. 

I've already cut out gluten and try to limit my dairy and sugar intake.  I'm thinking about trying the FODMAP diet for IBS I've read about.

Good luck!

@CrohnieTweets

 Reply posted for sunnysd.

I understand your concern about not wanting to be on Pentasa. I have been on it for almost a year and a half now and havent had any side effects but i do still occasionally flare to the point that I am admitted to the hospital and have to do a stint of Prednisone.  I just recently stop the Prednisone after 6 weeks of taper.  I have changed my GI doctor and he now wants to see how I react with just taking the Pentasa for a month without any other meds.  He has suggested that I will need to be on Humira.  My other GI had me on Remicade therapy, which seemed to work, but  he no longer takes my insurance.

As for the bloating, I still get that on occasion and I cant exactly pin point what does it. I wish i could be of more help.  I would definitely try the Pentasa and see if that helps with the inflammation in your gut that may be causing the bloat.

Good luck to you!
~Maria