Question for Keeper (or anyone)

Penny,

I will tell you one thing that I have learned since my surgeries. I no longer digest things the same way. Many foods and supplements upset "me" very easily. So I have found that by modifying my diet to what fits (me), seems to work the best. Some people after resections do really well, and go on to be able to eat what they want etc, which sound likes you have been able to eat alot more than I can. My doctor calls my digestion problems "mechanical issues".

I will tell you that if you want to keep this remission, you really should be either taking a maintainence med or watching your diet closely. Remember this is a chronic and incurable illness. I am a firm believer in maintainence meds, its because of me not wanting to take meds in the first place that ended with me having a emergency resection and then another within 3 years after the 1st. So now I always take some type of maintainence med. If you are dead set against meds, then getting on a diet that doesn't upset your system should be used. You can look in our resources and read about the different diets available. But I will tell you, "my personal opinion" is the diets can help the symptoms but can't stop the disease.

Also, I will tell you that I do not think you do not have the stricturing type of Crohns, but the fistulizing since you have had fistulas. I have the stricturing type of Crohns and I tend to have alot of scar tissue and blockages. In my 33 years with this darn disease, thank God I have not had any fistula's.

Hopefully, Keeper will be along soon and give you their thoughts. But I thought I would give you mine for the time being.

Hugs
Gail*Nanners*

Penny,

Never hesitate to ask any question you have. We have alot of wonderful and supportive folks here, and some that are very knowledgeable about alot aspects of this dd.

I really do understand when you say you are grieving for the changes that have occured. I am too. Yesterday was a really down day for me. I am clinically in remission, but because of the changes that surgeries have caused, really gets to me on a day to day basis. I am so tired of waking up about an hour before my alarm is to go off, because I have to go to the bathroom. And its never a quick in and out, but about 15-20 minutes of trying to get all this crap out. Sometimes like this morning, I will have alot of spasms which at times can make me really nauseous.

I guess I am realizing that even in remission I am still sick, and that can be really hard on my spirits at times. Just wanted you to know you are not alone.

Hugs
Gail*Nanners*

Sorry for the delay replying - I was doing a colonoscopy prep and spent my time reading and playing games to take my mind off not being able to eat. And then it was a full day traveling to get to the specialist for the procedure - it involves ferries.

First, the body will get used to taking vitamins and suddenly stopping them will probably cause short term deficiencies. This will be very short-lived though, so it is not a big problem. It is also true that taking megadoses of vitamins will be hard on your body as the kidneys struggle to handle the sudden excess of vitamins. This is also something that you get accustomed to. You should also take B vitamins in about the same ratio as the "Recommended Daily Allowance" since they work together. Taking an excess of one will cause the related vitamins to be exhausted by the action of the one taken in excess.

Figuring out what foods cause problems is a bit like solving detective novels - you ate 5 things and had a problem. Then you ate a different 5 things, with some things in common and THAT caused a problem. After a time, you get a list of the common problem sources and from there, you can make generalizations. In your case, (wholemeal, granary, coffee, coriander, some beers and occasionally high fat food; pizza (now hurts a lot if I have it!!), curries and kebabs/chips) you might suspect wheat (wholemeal, granary, pizza and maybe something in curries). My personal take on the fat sensitivity is that the fried foods don't digest well due to the fat so that you end up passing undigested starches in the form of potato, onion and gravy starch into your gut where the normal gut bacteria seize them with glee and multiply greatly. The one thing that they know about Crohn's is that the body has made antibodies to normal gut bacteria, so that feeding them causes problems. The bacteria associated with Crohn's antibodies all digest starches and starches are the component of your diet that is only partly digested by your system. I am not sure that there are not other bacteria that digest other foods that could cause problems, but I know that when I restrict my starch intake, my stool volume is reduced by 50 - 70%. That is despite the fact that I have to eat more food of other kinds. This reduction in volume is entirely due to less bacterial growth in the gut - the missing volume would be composed of gut bacteria. You don't have to eat zero starch - that is nearly impossible. Just restrict it to a single serving a day - or less.

The question of probiotics and so on and how do you know if they are working - you don't usually, except in the long run. You can't be sure that you would not have felt good even if you had not done anything. The only thing you can go by is studies published in the scientific literature. There are several studies that confirm the advantages of certain probiotics for gut problems - not all probiotics, just a certain few. The ones that I can remember are Culturelle, Align and VSL#3 and I seem to remember good things about Acidophilus Reuteri. There are a few others, but without some kind of study to warrant using them, it is a gamble. In fact, some species of Bifidobacter (don't know which ones exactly) have been known to cause problems in Crohn's. Another thing to avoid is formulas that include "prebiotics" like inulin and FOS. Those are bacteria food and will also feed the undesirables.

Really, the approach that I favor is get a workable low starch diet (warning: some restaurants have ZERO menu items that have no starch) and then use a multivitamin and a good probiotic as a starting point. The starch angle I have explained. The multivitamin is because Crohn's impairs absorption of nutrients. I would wonder if you have a B12 deficiency since you have had a resection - you might want to add a sublingual B12 supplement as well. The probiotic is a way of managing the population of gut bacteria. A good probiotic will do a couple of things: it will calm down the gut as a result of its manipulation of the gut immune system (an acclimatized bacteria will do that to avoid being attacked by the gut immune system) and it will compete with the undesirable gut bacteria and possibly occupy their position in the gut ecology. Once you have established a routine, occasional missed steps are less of a problem because the system will have a homeostasis and will not be quickly upset by small problems. Part of the problem in Crohn's is that the gut lining is not intact. There is normally a barrier between the gut contents and the immune cells of the gut lining. When that barrier is opened, Gut bacteria trigger the immune system and cause inflammation with all the known results. If you can keep the gut inflammation in check, that avoids the recurrence of the problem. That is the virtue of maintenance meds like pentasa. You may not need it if you don't have other causes of inflammation, but it is good insurance.

You should also know that despite doing all the "right" things, you can still have problems. There are several known causes of flares: alcohol, NSAIDs, gut infections (Norwalk or food poisoning etc.), possibly food sensitivities, stress and tobacco. You may be able to avoid some of these, but stress and second hand smoke are often hard to avoid. If you get a flare from one of these, you have to baby yourself. Eat only predigested foods like soup or cooked fruit (like baby food, but NO pablum) or maybe just fast. Take your meds and probiotics regularly. Do something for stress - practice breathing, meditate, do yoga, exercise or whatever works for you. After a while, you should begin to recover.

Finally, do not rely on the health service. They do their job, but that does not usually include education. You are much better off knowing about your problem - preferably more than your doctors do. It is not so unlikely - few of them read more than a fraction of the current literature, so many of their ideas are not different from what they learned in med school. In any event, you should know yourself much better than they possibly could. You have to be your own advocate and so you need to know the terms that doctors might understand.