Three months after diagnosis and I hate it.

[movienut10]

Okay, so I am not much for posting on forums, but after living with this for so long now and now knowing what is wrong for three months, I have to reach out for some friendship and advice. First, let me introduce myself, I am Christopher, 42 years of age. I have had problems with my digestive system for years, but it started going off the hook this past October. I will not even go into detail of how bad the diarrhea was, I am sure most of you already know. The abdominal pain, gas and bloating was infrequent (off and of for short periods of time) until the end of April. I had flare up that was so bad it lasted over two weeks, prompting me to finally go to the hospital. I was officially diagnosed with UC but the doctor told me that he believed it was caused by Crohns. I have not had the Crohns diagnosed as I do not have the ability to go to a GI doctor to get that official, but I have not doubt whatsoever that I have both Crohns and UC. Since the diagnosis I have gone from 170 lbs. to 138 lbs. I am having such a hard time coming to grips with this whole deal. Nothing seems to settle on my stomach, no matter what it is I eat and the diarrhea has become a way of life. I am learning what to avoid, which of course sucks as it is almost everything I love. Meat, pork, corn (especially popcorn) raw veggies, chicken and turkey skin, fried foods and nuts are my faves, but unless I can ever get this under control, I may never get to enjoy them again. Although I am not a doctor, I feel that I have a very severe form of the disease and am going to have to take some very drastic steps to alter my diet. I am a MAJOR caffeine junkie, coffee in the morning, soda or energy drink during the work day and sweet tea at night. I am willing to cut everything bad out, but I am not sure if I have the will power to stop the caffeine. I have stuck to nothing but rice and pasta for the past week, and it has helped a little bit, but I really don't know how much good it is doing or if what good it is doing is being negated by my caffeine intake. So hear I am, typing and posting. Any help or feedback will be much appreciated.

 

[mickey]

Why not try a very good probiotic to help settle the belly? Ginger tea to replace your sweet tea at night? Ginger helps calm the belly. Try to eliminate the suguars; as that is not good for any disease. Caffeine may exacerbate your inflammation, so try to cut down by adding more water and never have on empty belly. I was told to have tea/coffee AFTER or while eating. Having it before will affect stomach acid. Some tips that may help! good luck!

 

[dragonfly]

hey & welcome!!! sorry to hear that your in such a mess. figuring out a diet is very hard and very limited! i was taught 15 yrs ago a diet called the BRAT standing for Bananas Rice Applesauce & Toast....pretty bland yes but it does help alot during a flare. i also have both UC & crohns...i had surgery at 15 yrs of age to cure me forever then after the reconnect 3 months later and more and more problems they decided it was crohns...so long story short i have both as well!! i have multiple fistuslas & was recently dx with HS as well. my jpouch is starting to pull away from the rectum so here we go again! with all the advances in the medical world you would think by now you should be able to replace a jpouch instead of having a permentent bag??? im not ready for that route yet im only 32 have 2 kids 5 & 3 and i want to enjoy everything i can with them for as long as i can, my HS is whats giving me a real hard time. i have surgery scheduled for sept 5th and ive seen the plastic surgen he said i will not need skin grafts at this time but recovery will be slow and painful....i appreciate the honestly very much but too me that kind of pain can be no worse than having these things! im out of choices now, there is no treatment for HS just pretty much suffer! ive tired meds just stopped remicade as it was not helping neither crohns/fistusla or the HS.
maybe you could keep a food journal?? i did that after my reconnect yrs ago to help me figure out what i could and couldnt handle, might be helpful for you as well?? just from my experience....NO corn!!! EVER....any kind not popcorn NOTHING!!!! raw veggies & nuts are a very big NO also!! i dont eat much meat but my when i do my belly doesnt like it much. and caffeine....you may have met your match!! i LOVE my diet coke & coffee!!! i dont have a problem with drinking so much i think because the rest of my diet is so bland. i dont do the moster or energy drinks at all...i cant handle them but my advice is dont give up everything! pick 2 that are your favs and stick with them?? i love sweet tea also but i know that everytime i drink it my belly will hurt for awhile and id better be close to a bathroom so i limit myself to that!
its tough to do but you will get it! get a juicer... i did and i LOVE it! those big nasty looking bottles of green juice in the store that costs $7+ is actually freaking wonderful!! i cannot afford to buy them so i broke down and bought a juicer, one that takes the seed/skins/pulp (another very big NO) off & out of the juice itself ( got mine at target for 70) and i even got my girls drinking all colors of fruits & veggies!!
good luck in figuring it all out and again welcome!!! there is SO much to read and find out here on this site and please feel free to ask/post away!!! thats what we are here for!!

 

[Z_Ghost]

I drink 1 cup of coffee a day and that's all, maybe 1 coke but only if I am not having a flair.
Never any energy drink, that will set me off big time.
Sugar, Dairy, gluten, fiber can all be bad,
Some of the people here have found diet has help them a lot
Might want to look here
http://www.crohnsforum.com/forumdisplay.php?f=17
I hate to say it but it really sounds like you need to go to a GI doctor.

 

[movienut10]

Tonight is a good example for me. I had a cup of coffee this morning, a NOS energy drink, that I nursed from 11 a.m. till 6:30 this evening (yes, I made one can last me seven hours) and a can of Arizona tea with my only food today, Knorr Cheddar and Broccoli noodles. Three hours after eating and I have to go to the bathroom (holding off till the last second, just don't wanna sit on the throne another time today) and my stomach is totally wrecked. It was fine until I ate, but since then, forget about it. Funny thing is, I did not eat because I was really hungry ( I really never am, unless I get the munchies from smoking that funny stuff) but because I knew I had to and now I regret it. The only thing I can think is it was either the cheese sauce or the little bit of broccoli that was in the noodles. As far as all the drugs, supplements and such, I am totally clueless as I have no insurance and have not had any doctor follow up since the diagnosis on May 10th. It could be getting worse or doing the same for all I know, but it darn sure ain't getting any better. To be honest, up until the past few weeks, where it has been affecting my ability to work, I have been pretty much in denial about it. I have gotten to the point where I am feed up with everything about it and am ready to do what I have to do to make this thing livable instead of what I am having to deal with at this time.

 

[movienut10]

@Z_Ghost I have no doubt I need to see a GI doctor, have a colonoscopy (oh boy, can't wait) and get on a treatment plan. I of course fear the dangers of the complications from what I have and I don't want this to continue to get worse. Getting medical help when you are the working poor with an employer who does not provide health insurance is very, very hard. Plus, being honest about myself, I am horrible about applying for aid and making doctors appointments. It is a flaw that has never really been to much of a problem, but now that I am in need of medical help I find myself overwhelmed with what needs to be done to get that help.

 

[dragonfly]

you cant be turned away bacause of no insurance...i had bills over 20,000 in my 20's because i had no health insurance but i was always treated and eventually met with a finanical advisor at the clinic i was being treated at and she got my bills wrote-off! she also encouraged me to apply for disablitly.
STOP being horrible about it!! do it and do it soon! you dont wanna let things get so bad that you have no fighting chance anymore.
my guess.....it was the broccoli! good luck to you!

 

[Z_Ghost]

I see people all the time going to the hospital that have no insurance, you need to go too.

 

[darlene]

hi all i just have to say that energy drinks are big no that set me off big time makes it hard when i have no energy,but went to the doctors today and started on the B12 shots,and dont hold off for so long as you will damage your insides so bad...good luck to you all

 

[kllyeve]

When my stomach wouldn't let me tolerate alot of food, I drank Diabetic Boost to get nutrients in. Some people find that resting the bowel can help fight a flare and at least they can function somewhat. So maybe try adding in some Ensure or Boost to at least try and stop the weight loss and the nutrient deficiencies you probably have. These drinks are lactose free and gluten free so seem to be tolerated well.

And see a GI, I really think you are going to need that kind of help from the sounds of how serious this is.

 

[agirl65]

I work for a non profit hospital and know that the ER can not/will not turn you away. The outpatient departments have really had to crack down and get some type of payment agreement, but our ER can not turn you away. I would imagine other ER's are the same.... You need to go, your health is way too important.

 

[Ckt]

@agirl65..you are absolutely right. It's federal law in the states that no one is turned away or denied care in the emergency room.
So my suggestion is to get thee to the er!they may be able to admit you and do the required tests for an accurate diagnosis. On e you're diagnosed, many drug companies have assistance programs.
I would rather have my pride hurt than lose all my intestine!please seek some help!!

 

[movienut10]

Shortly after I was diagnosed, I was in sever pain, and needed to be admitted and Forsyth Northside (North Atlanta) not only did they not treat or admit me, but they had me escorted out of the hospital by security guards. I explained I was so bad and had no way to see a GI and begged to be admitted to get help, cried even and it was to no avail. Since then, I have moved to PA and am working on getting assistance so I can get the help I need. I understand the law and all, but unless I have the money to hire an attorney and sue Forstyh Northside, then them breaking the law will have no repercussions for them. I am not being bitter, it is just how it happened for me. After that incident, I have a hard time trusting a hospital to do the right thing for someone with no insurance.

 

[Ckt]

I can understand the mistrust in hospitals. And feeling like you have no recourse when they escorted you out of the hospital in Atlanta. I don't know what to tell you to be honest. I may have not received great care on all occasions when I went to a hospital but I did receive some sort of care. you can always call patient advocates/reps in specific hospitals if you feel you weren't treated well..and I am sure you could file complaints with federal agencies governing hospitals..will that help you now?probably not other than closure. For now?i just suggest you find someone to give you care..maybe there's a free clinic if you aren't willing to go thru the er? I'm in a small city and I'm surprised at how many resources available to those with no health insurance..I'm very glad for it!
I'm sorry you have to go throug this ordeal.

 

[Ckt]

I can understand the mistrust in hospitals. And feeling like you have no recourse when they escorted you out of the hospital in Atlanta. I don't know what to tell you to be honest. I may have not received great care on all occasions when I went to a hospital but I did receive some sort of care. you can always call patient advocates/reps in specific hospitals if you feel you weren't treated well..and I am sure you could file complaints with federal agencies governing hospitals..will that help you now?probably not other than closure. For now?i just suggest you find someone to give you care..maybe there's a free clinic if you aren't willing to go thru the er? I'm in a small city and I'm surprised at how many resources available to those with no health insurance..I'm very glad for it!
I'm sorry you have to go throug this ordeal.

 

[darlene]

wow thats insane!! like any1 likes going there to begin with,im in australia and i had a dr in the er tell me to stop wasting here time coase i ONLY have crohns disease,well i filed a complaint with my specialist and glad to hear she doesnt work there any more as my bowel was obstructing and my specialist knew i only ever go to the hospital desperate need,its annoying when even the doctors dont take crohns serious...but at the same time i feel im from the lucky country coase we dont need health insurance for anything here never paid to see my dr :dance:

 

[movienut10]

The flare ups are the worst part of it at the moment. I have learned to live with 5 to 10 trips to the bathroom a day, soiling myself without warning and such, but the pain, mild to severe sucks. The weight lose is no fun either. My managers at work keep telling me how thin and frail I am looking. I have missed work enough in the past couple of months that I have been written up and almost suspended for attendance. My managers understand my situation, but the company that I work for does not care, policy is policy. I have been dealing with a flare up since last night and I am praying that it does not get any worse before I have to work tomorrow (had today off).

 

[michaelearnest]

I am the sweet tea King, and I cannot give that up. There is a book out there that I swear by, Eating Right with a Bad Gut. It could be that your probably a Steeler's fan? I had to get that in there since I am in Brown's Country.

 

[mickey]

perhaps try another tea and use honey as the sweetener? I was drinking Arizona tea and then was weaning down and realized the corn derrivitive in the drink! That is why I went off of it. I immediately felt less bloated, stomach reactions. Something to consider!

 

[movienut10]

Yes Michael, lifelong Steelers fan. Actually moved here almost three months ago just because I am that much of a fan, plus had no place better to live, lol. I don't hate the Browns, in fact, I enjoy the hell out of watching them lose to the Steelers every year. @mickey, I did not realize that high fructose corn syrup was bad, but now that you point it out, it makes a lot of sense. That must be why the Pepsi Throwback sits better on my stomach than regular Pepsi. I can give up a lot, not happily, but sugar and caffeine are two things that they will have to pry from my dead hands.

 

[Thermo]

When your disease gets bad enough you will quit everything. When you are ready I recommend switching to a true low residue diet to allow your stomuch to rest. UC is very affected by what you eat. It is possible to reset your stomach but you have to cut everything for several months. Are you on any medications?

 

[Ckt]

I agree with thermo..it SUCKS to give up things we love to eat and drink but it sucks even more to be in the fetal position in bed because of pain and diarrhea! I know diarrhea,my friend!15-20 a day and have to wear a panty liner because of leaks and sometimes incontinence. I call myself miss poopy pants now!:ytongue:
Someone previously mentioned ensure or a nutrition al drink like that while you are flaring..have you thought about doing that to rest your gut and keep your weight?and gi ing up caffeine isn't all that bad if done slowly. I've done it and was a big coffee snob! Organic beans ground myself in a French press..yes,sometimes I miss it and I will cheat every once in awhile and have a cup. I was also eating a lot of processed fast food but I can't afford to do that anymore. Strangely I can eat Indian food and sushi until I pop with no bad effects. You'll learn eventually what you can and cannot do but for now maybe gong to a liquid diet will help your gut to heal.i also found that doing a high protein diet during a flare helps to give me energy and speeds the healing process a bit. I use protein powder(whey) and blend it with soy milk,bananas,and blueberries. I can also tolerate Greek yogurt so I add that into the mix. The drink ends up having a crazy amount of protein and I can sip on that for my breakfast.
My hope for you is that you decide to seek help from a doctor somewhere. Not all emergency rooms are like the one you went to in Atlanta. I've had some really rude doctors and some that have treated me as a malingerer..I hate going to the er because of that but when I get in too much pain or am dehydrated,I go anyway. I have medical bills piled so high there's no way I could pay them.and I have very good health insurance!sometimes teaching hospitals are much better to go to because they know the latest treatments and honestly see a lot of indigent patients. You even sound like you need to go and stay for some time at this point!

 

[movienut10]

@CKT. Thank you so much for you reply. It makes me feel a little less alone. I know all about the Mr. Poop pants also. The worst was this past Feb at Disney World, when 3 minutes after eating lunch and walking from the restaurant, my bowels let loose with no warning and there I am, in the middle of the park with a humongous brown and yellow liquid puddle at my feet. I have to say it was most likely one of the most embarrassing moments of my life. I love that you are a coffee snob too. I have my good beans, grinder and two, not one but two, french presses. After getting on the forums here, it is very obvious that I need to go to the doctor and pronto, but my only avenue is the emergency room. The hospital is literally a block from where I live, and seeing as how I am in day two of a flare up, and it is progressively getting worse, I am going to go. Giving up on everything for awhile to reset is becoming more and more of a possibility, but if I have to, I have to.

 

[agirl65]

Yes Michael, lifelong Steelers fan. Actually moved here almost three months ago just because I am that much of a fan, plus had no place better to live, lol. I don't hate the Browns, in fact, I enjoy the hell out of watching them lose to the Steelers every year. @mickey, I did not realize that high fructose corn syrup was bad, but now that you point it out, it makes a lot of sense. That must be why the Pepsi Throwback sits better on my stomach than regular Pepsi. I can give up a lot, not happily, but sugar and caffeine are two things that they will have to pry from my dead hands.

HA! I am the same way. Put down my Diet Dr. Pepper and slowly back away, make no sudden movements. I know caffeine isn't the best for me, but you can't take all my fun away, can you??

 

[movienut10]

@Agirl, funny. I am getting set to go to the emergency room soon, will post an update later. I am so glad I found this forum, it helps a lot to hear from others who are going through this also. Bless you all.

 

[movienut10]

@thermo, no, not on any meds. I have not seen a GI or had a colonoscopy, which I need desperately. Gonna try my darndest to get Butler hospital here in Butler, PA to admit me so I can get the help I need. Don't have high hopes that it will happen, but going to try anyways.

 

[agirl65]

@Agirl, funny. I am getting set to go to the emergency room soon, will post an update later. I am so glad I found this forum, it helps a lot to hear from others who are going through this also. Bless you all.

Oh no, I'm so sorry!! I hope you don't have to stay there all day! On my last ER visit, I sat there almost 9 hours (7 and 1/2 was in the waiting room!) I work at the hospital no certainly no employee perks. Har, har, har...

I hate you are going through this. You certainly need to see a GI, I hope they take care of all of this for you! I'm sorry!

 

[movienut10]

@agirl65. Thanks so much. I hope to get the help I need. I am hoping since this is such a small town that the wait won't be to bad, but if so, I will have my laptop and my windows 7 phone, so I can at least keep myself entertained. I call work this morning, and God bless my managers, they are letting me have the day off to go to the hospital and are going to fudge the attendance to keep me from getting suspended.

 

[agirl65]

@movienut10, I hope you get help as well! At least you can amuse yourself a little, and hopefully you won't be waiting too long. People watching in the ER can be interesting as well. That is absolutely wonderful of your managers trying to help you like that. I can't imagine what it would be like to work for someone that wasn't understanding. Good luck and please keep us posted.

 

[Thermo]

Sulfasalazine and Prednisone are both so cheap you do not need insurance. In fact I never went through insurance on these medications because they would charge me more than the retail pharmacy would. We are talking $10 for a 30-60 day supply. And these are all also available on the Canada drug market. Worse case scenario you pay to see a doctor out of pocket who prescribes these and you get them filled in Canada. If I had a story like your Disney World story I would never go un-medicated again. While I seriously want everything to work out for you I think your disease is sending you some major red flags and you need to listen to it otherwise there is going to be some major consequences with surgery down the road. I really recommend a diet change until things get back to normal. Let us know how things went today, good luck.

 

[Athena_Noctua]

I'm running the risk of being accused of being over zealous again, but this is the reason I FERVENTLY believe anyone with an IBD should seriously consider going Palaeo. I reckon this is why my flare-ups haven't been as bad of late - I get REALLY ill when I 'treat' myself to things I shouldn't be eating, such as popcorn, cheesecake, anything containing a lot of sugar/grains.

It's logical. Palaeo is all about eating as humans have done for the past 2m years, it's about eating foods our bodies can cope with (meat, fish, eggs, veggies (okay maybe not veggies) some fruits) and coconut oil. There's plenty out there about the benefit of coconut oil for those with IBDs; it's anti inflammatory, antibacterial and antiviral. I use between 50 and 100g daily, both to cook with and straight from the tub. Make sure you buy unrefined extra virgin (doesn't have to be organic, but it's preferable) the refined stuff really is only good for the manufacture of cosmetics and toiletries, as most of the good stuff's lost in the refining process. It's also excellent for calming down rashes, and as a hair conditioner (takes some rinsing, though!). The 'magic' ingredient, is lauric acid, which is only found in similar quantity in human breast milk.

I also use coconut butter (the pulped 'meat') but am wary as it does sometimes cause problems (as coconut's very fibrous).

It's not cheap, but at least in America you can buy it in bulk (Nutiva do 6x54oz tubs for around $200 (that's around £120 - which would be like me buying 4 tubs and receiving 2 free!). Think they also ship to Canada, but they don't overseas.

The other thing I'm trying, which I'd forgotten about, is cinnamon. There's plenty of evidence, both scientific and anecdotal of its ability to regulate blood sugar levels. Now, eating a higher-fat/lower-carb diet should help (though I'm still having problems!). You can either buy it from the grocery store, or NOW do caps. I'd couple it with chromium malate (NOW call theirs 'chromate' I think) and vitamin D.

For any Brits reading this DON'T bother buying supplements from H&B - the dose they supply is about as much use as a comb is to a bald man! Take their O3 caps; the dose is 300mg (the '1000mg' on the bottle is simply the weight of the gelcap) - to get a decent beneficial dose, you'd need to be getting through at least a bottle every couple of days! Buying NOW - or Dr.'s Best - online will save you loads in the long run!

Sarah xxx