It seems that a lot of things are suddenly going wrong and i need advice from anyone that has experienced any of these issues. For the past 7 months or so I have been having major digestion issues. I have horrible bloating which makes me look pregnant and is extremely uncomfortable. I also have to use the restroom often. I have always been very good about my enzymes and never miss a dose. My doc gave me a miralax and said it usually works, but isnt doing a thing for me. I also stopped my period around the same time. I am at a higher weight than I ever have been before so I am not sure why it suddenly stopped. Has this happened to anyone and did they figure out why. I have always had lung problems, but the addition of the digestive and period problems is making me go crazy...I feel like nothing is working right in my body anymore. If anyone has any advice or has been in a similar situation please let me know!! Thanks
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so frustrated with health...help!
- Thread starter anonymous
- Start date
ClashPunk82
New member
Have you not had a period for 7 months? If that is the case I would suspect maybe the symptoms are from pregnancy. And if you aren't pregnant I am not exactly sure what the problem could be. You should really talk in depth with your doc about what's been going on.
ClashPunk82
New member
Wow that's really odd. I am trying to think of what it could be but I am drawing a blank. maybe you need to change your enzymes. That might help.
farbeyond1
New member
Hello,
This is Mike, I'm a 27yr old male with CF. Granted, I cannot relate to you with things regarding your menstral cycle... lol, but I can relate to you with having several bouts with digestive problems. Besides getting advice from people online, my first recommend is to contact your local CF doctors and expain to them what you've been going through. If you feel like you're doctors aren't offering you enough support, try contacing other CF facilities to see what they may offer. On a more personal note, my experiences with digestion have been changing as well. One thing that I noticed was any dairy products caused similar painful bloating and frequent bathroom visits. I would recommend trying to take a few days off from having certain dairy products, especially milk. If you find that milk is one of your problems, try buying "Lactaid" milk. This has no lactose in it & digests fine in my system. I agree with Clashpunk82, that you may also want to look into changing your enzymes. I've been switched from Pancrease, Creon to now Ultrase MT20... these seem to work the best for me. I hope this has been helpful.
I also wanted to mention that I am currently hospitalized for 2-3 weeks and am in the process of trying to change the way we are dealt with as CF patients. Throughout my life doctors have been very helpful with trying to keep me as healthy as possible. They've done a great job with keeping me informed with nutrition to allow me to sustain an adequate weight... however, they have neglected to offer any psychological counseling with this disease. My hopes is to some day have more resources available for parents of CF children, patients young and old with CF to help them understand how life can be with this illness. My hopes with this is to allow future CF patients to live a more productive, mentally healthy life.
If you ever need someone to talk to, someone that could relate to what you are going through, please feel free to email me. My address is "farbeyond1@cox.net." I'm also currently on the lung transplant list and could use a friend or two to talk with as well.
Take care,
Mike
This is Mike, I'm a 27yr old male with CF. Granted, I cannot relate to you with things regarding your menstral cycle... lol, but I can relate to you with having several bouts with digestive problems. Besides getting advice from people online, my first recommend is to contact your local CF doctors and expain to them what you've been going through. If you feel like you're doctors aren't offering you enough support, try contacing other CF facilities to see what they may offer. On a more personal note, my experiences with digestion have been changing as well. One thing that I noticed was any dairy products caused similar painful bloating and frequent bathroom visits. I would recommend trying to take a few days off from having certain dairy products, especially milk. If you find that milk is one of your problems, try buying "Lactaid" milk. This has no lactose in it & digests fine in my system. I agree with Clashpunk82, that you may also want to look into changing your enzymes. I've been switched from Pancrease, Creon to now Ultrase MT20... these seem to work the best for me. I hope this has been helpful.
I also wanted to mention that I am currently hospitalized for 2-3 weeks and am in the process of trying to change the way we are dealt with as CF patients. Throughout my life doctors have been very helpful with trying to keep me as healthy as possible. They've done a great job with keeping me informed with nutrition to allow me to sustain an adequate weight... however, they have neglected to offer any psychological counseling with this disease. My hopes is to some day have more resources available for parents of CF children, patients young and old with CF to help them understand how life can be with this illness. My hopes with this is to allow future CF patients to live a more productive, mentally healthy life.
If you ever need someone to talk to, someone that could relate to what you are going through, please feel free to email me. My address is "farbeyond1@cox.net." I'm also currently on the lung transplant list and could use a friend or two to talk with as well.
Take care,
Mike
thefrogprincess
New member
It sounds like it could be a hormone imbalance, especially witht he period problems. Something similar happened when I was 18, I would get my period for 8 days, get it again 2 weeks later then go months without. I suggest getting your hormone levels tested, its just a couple vials of blood. Sometimes all you need to do is go on the pill or switch brands if you're already on it.
tessa55454
New member
Maybe you should see a gyno, and maybe a gasterintronoligist (sp). It is probably hormone related, but maybe not, hopefully nothing too seriousl. I would definitley go to a gyno first off.
I had bloating problems in the past, big time. Nothing was digesting, and what I found once I had been juicing a lot of fruits and veggies lately and I had stopped just because I was really busy. My body was used to getting rid of toxins on a regular basis and then since I stopped all this crazy bacteria was growing inside my intestines. I started taking "Ultra acidophilus." I had to get the ultra cause of course mega didn't work, I have to have the most potent. It ate the bad bacteria and and replaced my intestines with good bacteria. I take it now if I have diarrhea or gas problems, and it helps to lessen the pain or bloating. Sometimes it could be from a med you are on. I would go back and see what things have changed in your life since the onset on the problem. Stress, school, foods, etc?
i hope you get better. It is so uncomfortable.
Tessa 27 w/cf
I had bloating problems in the past, big time. Nothing was digesting, and what I found once I had been juicing a lot of fruits and veggies lately and I had stopped just because I was really busy. My body was used to getting rid of toxins on a regular basis and then since I stopped all this crazy bacteria was growing inside my intestines. I started taking "Ultra acidophilus." I had to get the ultra cause of course mega didn't work, I have to have the most potent. It ate the bad bacteria and and replaced my intestines with good bacteria. I take it now if I have diarrhea or gas problems, and it helps to lessen the pain or bloating. Sometimes it could be from a med you are on. I would go back and see what things have changed in your life since the onset on the problem. Stress, school, foods, etc?
i hope you get better. It is so uncomfortable.
Tessa 27 w/cf
rotandroll
New member
I have always had weird cycles when it comes to my period, but nothing that I could relate to bowel problems.
I can completely relate first hand about the distended bowel and everything. I have actually had someone (a customer at my old job) ask me if I was having a boy or a girl (I totally wasn't pregnant.........Just distended from bowel problems! Sort of funny but also incredibly embarassing). I recently was having a lot of problems with my bowels backing up, gas and bloating and after a few enemas (in the radiology department), Miralax three times a day and several rounds with GoLitely (spelled wrong?), AND a change of enzymes, I have gotten a little bit better.
Ask your doctors about alternatives to Miralax. Not every med works for every person. Maybe also ask them about a gastrographic (I think that's what it's called) enema. Make sure they x-ray your bowels and see where you are mainly backed up. Maybe you need to change enzymes?
I hope this helped.
I can completely relate first hand about the distended bowel and everything. I have actually had someone (a customer at my old job) ask me if I was having a boy or a girl (I totally wasn't pregnant.........Just distended from bowel problems! Sort of funny but also incredibly embarassing). I recently was having a lot of problems with my bowels backing up, gas and bloating and after a few enemas (in the radiology department), Miralax three times a day and several rounds with GoLitely (spelled wrong?), AND a change of enzymes, I have gotten a little bit better.
Ask your doctors about alternatives to Miralax. Not every med works for every person. Maybe also ask them about a gastrographic (I think that's what it's called) enema. Make sure they x-ray your bowels and see where you are mainly backed up. Maybe you need to change enzymes?
I hope this helped.
rotandroll
New member
This is to Mike ("farbeyond")... I am frusterated to know that you have not been helped with your emotional side of this disease. It seems like anytime I have needed help my healthcare team has been right there. It is a shame that not all CF centers have adequate social workers and psychologists/psychiatrists who are familiar with CF and/or chronic illness to help out. Have you ever sought out a mental health care worker away from your clinic? I hope you aren't suffering because of your clinic's shortcomings!
Hi Rotandroll, thanks for your concern. Although I have spent most of my life without any good resources to turn to, at 27 I am finally at a point in my life that has allowed me to realize how much we all have the opportunity to make changes. CF has always been an insecurity of mine, growing up as a child, in and out of the hospitals greaty hindered my abilities to make friends and develop healthy relationships. This forced me into the negative slump that I have been in. It's ironic that you sometimes need to hit rock bottom in order to pick yourself up and make something of your life. While keeping myself healthy, I also intend on trying to help others dealing with this illness cope in a better way that I had. I am from Rhode Island, this state has very little mental health available to us... especially people on SSI. This to me needs to change. If anyone out there has something to share that may allow me to get this ball rolling, please post your suggestions.
Thanks for listening,
Mike
Thanks for listening,
Mike
Maybe you should do the pregnancy test to definitely rule that out. My cousin has suffered from anorexia nervosa since the age of 14 (she is now 26) and only has 1 period per year that only lasts 2-3 days. She was told that she could never get pregnant - well guess what - she is pregnant. She never used any form of birth control because she was told she would never get pregnant.