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How to avoid "the bag"?

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Posted 4/28/2012 12:58 AM (GMT 0)
I am a 34 year old single mom, very new to Crohn's.  On 40 mgs of prednisone.  Spent 5 days in the hospital last week ( 2 in ICU ), due to seizures and GI bleed that led to blood transfusion of four units.  Biopsies from colonoscapy and endoscopy revealed Crohn's.

It seems like everyone I talk to knows someone with Crohn's.  And the majority of those people have colostomy bags (my biggest fear with this).  Are there any steps I can take, anything at all that I can do, or not do in order to heighten my chances of NOT ending up with a bag someday?

Thank you!

Posted 4/28/2012 1:18 AM (GMT 0)
Sorry to hear you've joined us.

It's definitely not a majority with colostomy bags. With Crohn's I haven't seen numbers but it might be around 10-20% who eventually need one? With UC I think it's slightly higher, around 20-30%, who eventually need one. And keep in mind that treatments have improved dramatically just in the last 10-15 years, so the numbers are going down. Those numbers go back to the 60s and 70s, when getting your colon removed was one of the only treatments they had for severe disease.

As for what you can do to avoid it, find a maintenance medication that works for you and stick with it. That's no guarantee, but it significantly increases your odds of doing well long term.
Posted 4/28/2012 1:19 AM (GMT 0)
I would also add that while getting a colostomy bag is probably the biggest fear for many people with IBD, those that end up getting one usually report that it's not as bad as they feared. Some even say "why didn't I do this a long time ago?!? I could have avoided years of being sick." That is true for UC more than Crohn's, but true for some Crohn's people as well.
Posted 4/28/2012 2:01 AM (GMT 0)
Hi! Please try to stay optimistic (easier said than done, I know). I have had CD for 10 years now and have been able to avoid surgery despite suffering from a fistula, obstruction, and pelvic abscess. It is obviously always hard to stay positive when you are in the middle of a bad flare or suffering from complications, but I promise life goes on! The best advice I can give is to find a good GI who is well informed about CD, keeps up with the current research, understands and respects your concerns regarding your disease, and is willing to work with you as a team to develop the best treatment plan for YOU. Once you get this current flare under control (and chances are you WILL, probably with the help of prednisone), get on a maintenance med that you feel comfortable taking. Hopefully this will get you feeling better and KEEP you feeling better. Unfortunately, this is a chronic disease, so hiccups (flares) will happen, but I truly feel if you have a good GI you can work through these things and get back on track.

I see that you are a single mom, but do you have a good support system? If possible, take time to rest and take care of yourself, don't be afraid to ask for help. Sometimes the best thing I can do for myself when I'm feeling crappy is drop my son off at my parents' or in-laws' and stay in bed and rest for the day. Good luck with everything, and I don't think a "bag" is in your near future, so don't think too much about that. Just think about getting better!!!
Posted 4/28/2012 2:22 AM (GMT 0)
Gosh thanks so much you guys!

Just saw my GI today, Love him!

I think the reason I am so afraid of the bag is because I was in health care for seven years and have cleaned, burped and changed them. They are so, so bad...

"maintanace meds"? Does that mean I have to forever be on something? Kinda sounds like I may be off and and on the pred the rest of my life, not sure how all this works yet...

Any foods I sould avoid? I would assume alcohol, caffine, spicy, beans.... anything else?
Anythig I should make sure I AM eating?
Started on a good fish oil today my GI gave me...
Posted 4/28/2012 2:27 AM (GMT 0)
The goal of maintenance meds is to keep you well AND to keep you off of pred! Pred is a very helpful drug, but it causes nearly as many problems and it helps, so it is only to be used when absolutely necessary. A good maintenance med will reduce the frequency and severity of flares, and that will reduce your need for prednisone, not to mention reducing the damage done by the disease itself.
Posted 4/28/2012 2:29 AM (GMT 0)
As for foods and diet, you will find many suggestions from other posters here. My advice is that diet is very individual, so find what works for you, all the while trying to eat as "healthy" as possible.
Posted 4/28/2012 4:31 AM (GMT 0)
Sounds like you are in good hands with a GI doctor you like. Everyone who posted had great advice. I 've had Crohns for 15 years, and can tell you that flares will come and go, and with meds that work for you, remission happens. With IBD, the foods you tolerate and those you don't are very individualized. They can also change. After one flare, I couldn't tolerate strawberries or tuna fish, but over time, I have been able to eat them again. My no nos are raw veggies and iceberg lettuce. Some people develop lactose intolerance. What I have learned is the importance of vitamins--a good multi, calcium supplements for women and vitamin D are essential, b /c we lose nutrients so easily. Regular bloodwork, at least twice a year, will keep you on track. I also found that exercising the rectal muscles regularly is helpful during those mad rushes to the restroom. The other thin.g I highly recommend is staying positive...yes, you have crohns, but you aren't blind, deaf, paralyzed, etc. I try to live life "sunny side up ". You will learn, and there are plenty of people with a wealth of knowledge to help you on this site. I wish I had been aware of it when I was first diagnosed!
Posted 4/28/2012 4:58 AM (GMT 0)
Hi. I understand your fear completely of ending up with a bag. I'm a 30 yr old mother of a seven year old and I was diagnosed with this disease when I was 19. At first things seemed to be under control with just a little azulfadine and pentasa. Then things got worse after I had my son. Four months after he was born I needed my gallbladder removed. Then the fun began. Then for about 4 yrs off and on I started running fevers. High fevers. Then I ended up in the hospital with 105 fever, packed in ice and wrapped in wet blankets to try to get my fever down. I needed blood transfusions, multiple antibiotics, and eventually it was decided after 3 weeks in the hospital that I needed surgery. When I woke up I had "the bag". I was so depressed. Here I was, 26 years old with a 4 yr old son and I had to crap into a bag. I had the bag for three months. To be perfectly honest with you it wasn't that bad. I mean don't get me wrong if I had a choice I definitly wouldn't want one if there was another option. I had a nurse come to my house once and week and show me how to take care of it and keep it clean and how to change the bag. It was a little unnerving looking down and seeing a piece of intestine sticking out my abdomen. After three months it was reversed. 7 months later I was back in a major flare and have been ever since. I'm scheduled for a resection again in May. This time the dr. does not think I will need the bag. I hope I don't wake up with it but if I do I know it's only temporary and it will be reversed again and it's not the end of the world. Keep your head up and try to get on maintence drugs as soon as possible. I'm currently on remicade and will be continuing with that after surgery along with 6mp. Feel well :-)
Posted 4/28/2012 2:42 PM (GMT 0)
Dear friend--Please don't fear an ostomy. While I pray the meds that are out there now and the terrific research that is being done will help you heal and effectively manage your Crohn's disease, an ostomy saved my life. I am 40 years old. At 37 years old, I had 24 years of moderate to severe crohn's colitis and never thought I'd have an ostomy. However, rather suddenly, 6mp failed me and I was too sick for humira. My rectum was perforated, my rectum-vagina ravaged my fistulas, my colon an absolute mess. I was down to less than 98 lbs, swollen from malnourishment, not really living my life anymore than 10 feet from a bathroom or my bed, depressed, and had no alternative. I had a total proctocolectomy.

I'm sorry you've had such a negative experience in health care with ostomies. But my experience, especially among the members of my ostomy support group, has been positive--not always easy--but I'm alive, I work full time, and there is ABSOLUTELY nothing I can't do because I have an ostomy.

Best to you.
Posted 4/28/2012 2:55 PM (GMT 0)
It seems like everyone I talk to knows someone with Crohn's. And the majority of those people have colostomy bags

Honestly sounds like hearsay to me. I'd take it all with a massive, massive pinch of salt. I've known, or personally spoken to, about six people with Crohn's in real life and not one of them has had a colostomy bag. That's not counting HW, where I can't even think of anybody on the Crohn's forum who has a bag. Oh no, wait, I've thought of one - UK person, she's not posted for ages. But yeah, that's one person on a forum where every other case is a severe or refractory one.

I'm one of those refractory cases, btw, and I have been considering a bag. I keep changing my mind. You have certainly helped put me off it, I must say. I feel like I need to be as ill as sammies was, and I'm not: it's just that eating has become almost entirely ruined for me.
Posted 4/29/2012 6:55 AM (GMT 0)
a lot of it has to do with the person too. just--how much you're willing to put up with. i was diagnosed at age 15, and now am 28 and am (knock on wood) bagless.

my dad, on the other hand--diagnosed at 56, had a bag by 58. he had absolutely no symptoms, then boom, got a flare, wasn't willing to go on tysabri to try and quell it, and basically ran out of options and didn't want to be on the prednisone anymore.

it depends on the person, and how much of the med side effects you're willing to endure. i refuse a bag for cosmetic reasons...but have all the lovely prednisone and MTX side effects to deal with as a result. and its not pretty. so not sure if the "cosmetic" of having a bag outweighs the cosmetic of having these drugs on board. my face is bloated beyond recognition, my hair is sooooo thin, and i have full-blown osteoporosis. my vision is getting worse by the week and i'm nauseated basically all the time.

sigh. i wish i could tell you there was a happy road ahead of you but for a lot of refractory people, the meds are a rough journey. keep your chin up.
Posted 4/29/2012 9:38 AM (GMT 0)
Hi,
Don't be afraid of the bag! I am refractory too, Pred and humira stopped working and I was in a bad shape last year and in a lot of pain. I made my own decision to go for an ileostomy, at the same time my GI proposed one, so we agreed. At the moment it's still temporary, they wanted first to see how I cope with it. The relief after surgery was immediately no pain. And dealing with the output, I guess it's different if your dealing with your own or with someone else's and it definitely doesn't smell! Much less than your bowl does with active crohns.
And with respect to appearance, I wear tighter dresses than before ,look better, as I am not bloated anymore/distended.
But don't worry, the GI will try all meds before surgery and you will have a say in your treatment plan.
Posted 5/7/2012 6:52 PM (GMT 0)
Hi sammies: sounds like you and I have been through a lot of the same things. It always makes me laugh when people talk about ostomies like they're a death sentence. Especially the people who claim to work in the health care field. Glad I've never run into one of them.

And stupid: given the lack of knowledge about this disease you've displayed in your posts, I'm wondering where in the health care field you worked? Housekeeping???
Posted 5/7/2012 10:26 PM (GMT 0)
Thanks cleo35. Your post made me feel slightly better about the prospect of having an ileostomy.

Although I'm still utterly, utterly undecided about it... <_<
Posted 5/7/2012 11:48 PM (GMT 0)
stupidassdisease-
To respond to your original questions.....you could take a look at the UC forum Resources thread. The last post on that thread contains some very good info from InSoFla about alternatives open to you.

As you will see from my signature, I am currently using transdermal LDN. You can look up Low Dose Naltrexone on various websites ldnscience.org, lowdosenaltrexone.org, etc. A lot of people who post on the UC forum are using it.......lots of posts on the subject.

Another website that contains info regarding food combining and alternative treatments (supplements, etc) is cureforulcerativecolitis.com.

I hope this info is helpful to you. :-)
Posted 5/9/2012 11:11 PM (GMT 0)
I am 47 year old female, I waas dignosed with CD when I was 14 years old, I was going through having flare ups often and on +prednisone all the time, I got to the part that they could not take me off predinsone everytime i would get real low dose i would have a flare up. then i went to hersey hospital and they said i had to have a total ileostomy done, i was depress but i got use to it and had lots of friends to keep me positive. then i kepted having fistulas and the hospital that i got operated on refused that i had one and i know my body, so i went for a second opion in allentown and sure enough i had a fistula that caused me to have a another operation they had to remove some small bowel and put the bag on the other side. so far i am doing pretty good with occasionally blockages. so the best advice if you do not want an bag follow a diet.
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