Crohn's Disease

[07FZ-1]

I suffer from Diverticulitis. Depending on what doctor or gastro you go to ....the biggest problem seems to be accurately diagnosing any intestinal disorder. I have had two bouts in two years and my GP already is recommending surgery. I am still doing research.....but his school of thought is that it is like riding on a bald tire.....it will fail but the question is when. I do not buy that at this time and have chosen to look at what got me here.

Here is what i've learned and maybe it will help. From my research and real life experience.....you can probably look at what your diet has been and how you have taken care of yourself that aggrevates the condition (even crohn's)

Do whatever you have to in your life.....to be stress free......from exercise to sex....to riding.....whatever.....this is different for everyone......stop talking about it and just do it.

Go buy the books ...Great taste no pain. Learn how to eat properly by grouping (or pairing) the foods you ingest and how combining them effect the way you feel. Trust me it works. End your relationship with fast food and anything processed or in a box or can. it is not hard to do. Try, chicken, Fresh fish, and veggies. Limit spice. Red meat no more than once a week. no processed lunchmeat. No pizza. If you know it is crap.....then it is not for you. Use butter and or olive oil in your cooking. Any margerine or spread ......is totally processed and full of chemicals. You know what is in butter and it is waaaay better for you regardless of anything you are told. Fresh fruit everyday....banana's are easy...one a day.

Drink at least 1.5 to 2.0 liters of water a day everyday without fail. If you have to drink coffee limit it to one cup a day. No soda or pop period. No ice tea.....total acid....
The mentality here is that it creates acid......which must be diluted...by Water!! Limit booze....again VERY acid. The idea here is disease and infection THRIVE in an acid enviornment......they don't survive in alkaline.

Take a multivitamin each day, a fiber suppliment (miricale fiber from the Vitamin Shoppe mixes in eny food or drink) and a probiotic suppliment with your major meal each day. Get a high quality probiotic....like Natren Healthy trinity. Anything you find at walgreens is crap.

I typically eat twice a day....and not after 8pm period.
Eat your breakfast alone, share your lunch with a friend...and give your dinner to your enemy.

Since doing the above I am pain free and more normal then ever before...and since January have lost 30 LBS!.....

Read the books....they have helped those with all these disorders.

Hope this helps.

[Slim Johnson]

Thanks 07FZ-1.

I am with you all the way to the fiber supplement. With Crohn's fiber is bad. Especially with a stenosis. It can cause an obstruction. I already have to massage food through my intestine from time to time. Things like spinach, collard greens, asparagus are only a memory. At least until after the surgery. Then maybe.

I agree that proper diagnosis is crucial. I have had symptoms for as long as I can remember. I was not taken seriously by my parents, so the couple of times I went to the doctor for it (circa mid 80's), not only was there not the medical means available for proper diagnosis; I don't think the doctors even knew what Crohn's was.. I was just told I had a spastic colon, ibs. Etc.. Even in '04 it was missed. I can only imagine how a proper diagnosis could have helped, or hurt. Until recently, removal was the most common fix for damaged intestine. Now there is better medication (which works for many) as well as different surgical options. I have read that one option called strictureplasty. It is where the scarred tissue is cut in a way that it can be sewn together widening the affected area, eliminating the need for removal.

Once it's gone, it's gone.

[Rabeet]

Originally Posted by Slim Johnson

The food log is a great way to isolate foods that aggravate the condition. I have been thinking that GMO corn is playing a role also. It's just impossible to know exactly what foods contain Genetically Modified ingredients.

I do much of my cooking from scratch, in an effort to minimize the preservatives, and additives (like Carrageenan, and Guar gum) I ingest.

I just finished a battery of Cipro Monday. I think I have been on it for two, or three months now. I am hoping that things stay where they are now, for a while. I have not been making my typical 6+ trips to the toilet since I started the Cipro.

If you haven't been warned about Ciprio - Cipro and Levaquin are very well known to cause severe tendon damage. A fourteen day round of these did permanent damage to my wife's feet. I know of other people that experienced the same thing, including myself. That's how we figured out what caused my wife's foot problems.

It's real. If you haven't heard of this, look into it. And be careful. My wife's feet were damaged in 2007 and she has not recovered. I was on the drug for about four or five days before I noticed foot pain and stopped. I recovered in about a month.

[CreepingMalaise]

Slim,

I feel for what you are going through. My oldest son was diagnosed at 5, and during the next 3 years of his life gained exactly 2 pounds, after being in the bottom 1% height/weight wise at 5. It is immensely troubling to have a child go through what you are experiencing.

After a couple of years of feeling hopeless, we went on a national "tour", and saw several children's GI experts throughout the country. My wife and I decided to follow the advice of the one we felt most comfortable with (out of 4). He took him off all the harsh meds he was on, prescribed the fairly mellow Gastrocrom, and strict adherence to the SCD diet.

At first I was skeptical (OK, I was a complete asshat about it to my wife). But I promised her to give it a chance, and the whole family followed the diet for a year. Short version is he's doing great now. He's not cured, but he's much, much better. I believe the year on SCD allowed us to identify a couple of food allergies that were previously masked by his severe condition, and were possibly cause(s) of his condition. He is now (at 13) able to eat a wide variety of foods without problems. We still have to monitor things closely, and have a couple months here and there where he has to go pure SCD.

Anyway, I don't know if it will help you, but if you haven't investigated it yet, please look into it. I'm just down the road from you (Utah Valley) - if you want to discuss sometime shoot me a PM.

[Slim Johnson]

Rabeet,

My Dr. warned me about such a thing. He was reluctant to leave me on it long term. That is why I was on it only for a couple of months. I had to push him to do it for more than 30 days. Luckily, I only noticed a bit of pain in my hands from holding the handlebars of the bike, that I could relate to the meds. I will recover. I am lucky it hasn't been an issue like it was for you wife. I hope she gets some relief.

Creeping Malaise,

I will look into the Specific Carbohydrate Diet. I have read about several diet options, even tried some of them. None with any real success. I have kept a log of what I eat, and what the result is a few hours, days, and if it related to a flare, a couple of weeks afterward. At one point, I did a complete elimination diet. Starting with only water, and working up from there. I will admit, it's easier to avoid food when I am flaring, so it wasn't too tough just sticking to water. When I am flaring, even water will be uncomfortable, if not painful to consume. I often struggle with dehydration, not just from the loosies.. I won't want to ingest anything. Luckily, right now, I am not dealing with anything that severe. *knocking on wood* When I work up the courage to make some phone calls, I will hit you up. That time is getting closer.

[Slim Johnson]

I made my appointment with a surgeon today. His name is Dr. Edward Jordan. His practice is in Ogden, my appointment is on the 26th. I will post up some details.

His nurse mentioned that since my disease sounded more advanced, they may want to refer me to another surgeon. I mentioned to her that Dr. Jordan performed a resection on my late friend, and that changed her tone. I also have a HUGE distrust of Medical professionals, so it is very difficult for me to even want to call a Dr., let alone actually go see one. I am hoping Dr. Jordan will set a good first impression.

[Slim Johnson]

I saw the Dr today. I almost chickened out when my navigation took me to the wrong address.. I did a little looking around, found the clinic, and kept my appointment.

The doctor was probably the most eccentric fellow I have met in some time. We talked about my condition, the possibility that there may be an alternative to surgery, and a general discussion of what I would expect from surgery. We also talked about the estimated recovery time (optimistically) and possible complications.

It was sobering to hear him discuss literally going through every inch of my bowel to examine it. He was very serious when he told me that a lap procedure would not be the best way to explore my gut, as it leaves some room for doubt. This made sense to me. He also explained that it was not likely that I would feel any better than I do now, after surgery. I feel like this is a game of Russian Roulette... Damned if I do, Damned if I don't. More damned if I don't. I am not sure how much of my intestine I stand to lose, and the hope is that I won't have to lose any of my colon. The Doc said that he removes the "first domino in the series" leaving the rest of things alone. Meaning that the parts of the fistulae that come from the Ileum will go with the Ileum. The other parts of the intestine will be left alone to heal. The idea is that the Ileum is responsible for much of my trouble. We shall see.


I had also asked him about the stricture-plasty. He said that procedures like that are implemented when there is not much intestine left already. I thought that the procedure seemed a little extreme being that it left diseased intestine in the body. Normally, all of the diseased intestine is removed at the time of surgery.

I talk to the GI again on the 28th, and I have a feeling a colonoscopy is in my near future.. Follow up with the surgeon in December, and surgery in early '12.

[okaugust]

Good luck as you progress through your options and decisions!

[Slim Johnson]

As you can see from the time I posted this, I have not been able to sleep (all week.) My crohn's is flaring, and to top it off, I have come to the conclusion that my G.I. doctor is a complete IDIOT! As those following this thread know, I saw a surgeon on the 26th. I had been trying to contact my GI doc in an effort to get some pain medication before the 28th, as I have been milking my PK's for the last two weeks so I don't run out before my appt that was supposed to happen on the 7th (then moved to the 28th.) Well, after several failed attempts to get in contact with him, calling his office daily from the 26th-30th, I get a letter from him dated the 30th, that stated the following verbatim:

Dear Mr ***

Unfortunately due to your severe fistulizing Crohns disease and refusal to start appropriate medical therapy and or colorectal surgery evaluation for management of the Crohns disease it has made it difficult to provide appropriate medical therapy for your Crohns disease and continuing to prescribe narcotic medications and or steroids for management of your severe Crohns disease in my opinion provides substandard medical care in which I will no longer partake. The recent CT scan has showed no improvement of your Crohns disease with steroids and antibiotic therapy. I will continue to provide your care only for the next 30 days and would urge you to find another doctor who can share your views on the management of your Crohns disease. Please ask your insurance advocates to provide you with names of other gastroenterologists that will manage your Crohns disease.

Sincerely,

Peter Fenton MD


Now all I can say to this is WHAT THE **** DO YOU THINK I DID ON MONDAY YOU MOTHER****ING TOOLBOX????

Seems I must have imagined the whole visit with the surgeon on the 26th, and somehow Remicade is going to magically eliminate my fistulae, even though every goddam expert I have spoken to in this regard has told me that surgery is the ONLY means of removing them. AAAARRRGGGGHHHHH!!!! I was begging this SOB for surgery in '08 because I was suffering so much then (even though I was following his direction!) He told me that surgery was not an option at that time. Even though I had fistulae!!!!

Now I can only wonder that if I had actually had surgery then, maybe I would not be disabled, as I am now.

This is totally beyond my scope. Substandard? What the hell could I do differently? Take Remicade? That will only mask my symptoms, moreover, I could possibly have an allergic reaction to the drug, because I have already been on two different TNF blockers, with little to no effect on my disease. I also explained to the "doctor" that I did not want to die from Lymphoma (a known risk of tnf blockers) before my children hit puberty, and that I would rather take my chances with the steroids.

Isn't this MY CHOICE??? Don't I get to DECIDE which therapy works best for me? I have taken most every damn drug under the sun for Crohns, one of them almost killing me, another causing me to dump my bike, another which lost it's efficacy after about a year and a half (that was the tnf blocker) only to be replaced with another of the same family, with NO effect!!! The only drug I have used with success is Prednisone. The CT scan PROVED IT even though the "doctor" says it did not... I took the test, I know the results, I spoke personally to the radiologist, he told me to find a new doctor... I was under the impression that Dr. Peter Fenton knew what he was doing... my mistake.


Now, I have to find a new G.I. which means I have to start this ****ing trip all over again. Because naturally, the doctors know everything, and I know nothing... even though it's my body, and they have only just met me... Nevermind the emotional distress that this is causing me. I had a doctor do something similar to me in 2010, over 50$... I thought these people take an oath to do no harm?

Is it any wonder that I don't trust doctors?

[-Dash-]

Id write him a letter back stating:

"Thank you for your letter. I believe I will find another doctor as I dont trust one who cant write a simple letter without the longest run-on sentence in modern history."

[okaugust]

[Slim Johnson]

Originally Posted by DashRiprock

Id write him a letter back stating:

"Thank you for your letter. I believe I will find another doctor as I dont trust one who cant write a simple letter without the longest run-on sentence in modern history."

Thanks Dash, I needed a good laugh.

[70super]

This sucks out loud.

[Duken4evr]

It is your body and your choice. My doc was not nearly such an a$$hole, but he did not want to recommend surgery for me either. Finally after suffering with it for 18 years and experiencing a blockage that caused me to throw up after eating, I simply would not take no for an answer, had my illeum removed and have been pain free for over 10 years. They warned me it probably would come back, but it has not to date, at least not in a big way. I am a religious taker of fish oil caps. I get 'em at Costco and take 3 a day. They make for smooth poops

They can do all the diagnostic tests they want, but the bottom line in my case was they just didn't know what I had going on until they surgically went in. My surgeon found more than we knew about while he was "under the hood". He also found the rest of my system was completely clean, which was a big relief. I had severe ileitis.

That surgery was the best medical decision I ever did in my life, hands down. Not all docs are created equal either. UCLA has quite a gastro unit when it comes to doing surgery. That is where I had mine. My doc was useless, but that surgeon, Dr. Hiyama, was gold.

Praying for you man. I have at least an idea of the hell you are going through.

[Slim Johnson]

Thanks Duken4evr. The surgeon suggested the same idea, that he would not truly know what is what, until he cuts me open, and gets his hands in there. He was really down to earth, not wanting to give me false hope. I appreciate that. I also use the fish oil, aside from the burps, it's not too bad, actually, I like it better than the mesalamine. Fewer side effects. I have also started drinking Kefir again. It helps with the runs. Oh how I would love to never have diarrhea again!

I would have had surgery a few years ago, had my doctor not been so adamant about me NOT having one.. After all, He knows best! He figured that the biologic agents would better serve me. Yet here I am, years later, in the same position! Just the same thing I suspect would happen if I started the Remicade now.

[Duken4evr]

Freezing the fish oil caps helps with fishy aftertaste. Had a cap melt on a hot day, amazing how slick that stuff is. I like old fashioned oatmeal for breakfast too. Seems to do right by my gut.

Get the operation, if it is scarred and has fistula, it needs to come out. I had an incident where a blood vessel got involved in there and they still did not want to do surgery. Amazing. Coulda died from that one.

[Slim Johnson]

Sometimes, I feel like it's more a matter of ego, than sense. These doctors think they are Jesus, and can perform miracles, surgery simply removes that opportunity. It is a stark reminder that they have failed with their medical "magic".

I am working on getting another GI appt today. I can only hope that I won't have to wait another 8 weeks, since my followup was supposed to be on the 7th... I would also add that all of the stress from the last week has triggered another flare...
Oh well. After reading the hell that Mark Byrd is going through, I don't really have it so bad. I sure hope he gets through his situation without any more suffering. It really breaks my heart to hear about what he and Tari are enduring now.

[Slim Johnson]

UPDATE:

Hey Y'all!

I saw the GI today for the double endoscopy. The upper was normal aside from some redness, possibly gastritis.

"This was an abnormal study demonstrating ulceration in the sigmoid colon with a large impacted stool ball with inability to pass the scope beyond this region. There was swelling, erythema and ulcer just below this area. The Rectum showed mild erythema but no active disease. Biopsies were taken."

"I suspect that his Crohn's disease is significantly active at this time."

Surgery is in the near future... I really hope I can get under the knife before the end of the month...

I left feeling a little frustrated by the GI's attitude. I find him to be rude, impatient, always in a rush, and closed minded regarding treatment. It's always a speech about the TNF blockers... Which I do NOT want to take. I mentioned Naltrexone, and he was very dismissive about that idea. He later mentioned that "he might read some studies" Whatever... I am asking the Missus to get some medical studies from one of the Pharmacists that she works with. Then I can personally place them in his hand.. I thought he was an expert... HE thinks he is an expert....

I am still having horrible cramps, last night, I even went into a mild shock with the prep, passing an obstruction at 3:30am. I knew I would have a hard time with the prep, something I told the Dr. when I saw him last. When I told him that I wasn't clean today, I got the impression from him that it was somehow my fault the prep wasn't fabulous!! Nevermind that I told him the last 2 colonoscopies were done with a less than great prep... With as much of a mess as I have in my gut, it shouldn't be too much of a surprise. FWIW, I still haven't passed the second occlusion... on purpose of course (as if to suggest I have some control over such things)... After the consult, I will be looking to find a GI in SLC. Someone with more compassion, and patience for their patients.

Am I asking for too much?

[okaugust]

I find that sometimes it is better to just be upfront. Just because they have an MD after their name, doesn't mean you can't say, "you know, I find your bed side manner horrible. Have you ever thought about slowing down, listening to me, and having an actual conversation?"

If not, find another doctor and then tell the first one why.

[fizzyrider]

Best of luck to you Slim.

okaugust's advice sounds pretty good to me. Find the doc who will work with you, not just on you.