Question for Keeper (or anyone)

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uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 7/20/2009 10:31 AM (GMT -7)   
Hi Keeper
 
I really like the way you respond to posts and explain things simply so I wondered if you could help me understand something?
 
Loads of people using this forum have many symptoms and are taking daily cocktails of meds, supplements and restrictive diet. I had a resection in March but looking back I think I had symptoms on & off over the years and naturally (without real conscious thought) modified my diet - wholemeal, granary, coffee, coriander, some beers and occasionally high fat food have been off limits or a calculated risk of cramping pain and diarrhea. Now, with even less of my small bowel left it just makes sense (even though my consultant said it didn't matter) that my digestive system is going to be more affected.
 
Following posts I've read and the tendency that I have a stricturing sort of Crohn's, I have been trying to keep to a fairly low fat, low fibre diet - my friends can't believe I have fruit and veg in my diet and not living on takeaway pizza (now hurts a lot if I have it!!), curries  and kebabs/chips (fat content?). But......am I doing the right thing by controlling things too much? I have bought probiotics, multivitamins etc but I am rubbish at taking them regularly. Don't laugh but do you think your body gets used to having something every day , whether you need it or not, and then if it doesn't get it reacts and gives you symptoms? How do people really know whether it is the probiotic that is improving things after a few weeks and not other factors (including passage of time)?
 
I think I am in remission at the moment (colonoscopy in Sept) and want to stay that way but I don't want to become a slave to meds, supplements and diet - I am already way too anxious about every pain/twinge I am getting without worrying if I've missed taking something or eating something.. any thoughts??
diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........
 
Penny x


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/20/2009 11:51 AM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 7/20/2009 11:48 PM (GMT -7)   
Nanners - as always I appreciate your comments, but I think I may have not communicated my thoughts well enough. I will be starting maintenance meds (probably Pentasa) after my colonoscopy in September. I finished a long course of Flagyl just before I went on my hols and now have around 2 months of (in my head) getting a 'baseline'. Otherwise how would I know what is down to the Crohn's and what is down to side effects of tablets, something I've eaten/can't tolerate any more or stress-related etc ? If I start taking other things as well (e.g. pro-biotics, vitamins, stool softeners etc) how will I know what is helping or not and if I stop taking them/miss doses can this have a bad effect. I take my thyroid meds every day but have gone several days without before now and not noticed an effect (I'm on quite a high dose) so I want to be more sensitive to my body without being obsessed.
 
So many things have changed since being admitted to hospital in March - not just external and internal body function but diet, activity, relationships, ability to do my job in the same way etc. I am trying to get a little bit of control back and probably going through a grieving process for life before March - it wasn't always a healthy one (smoking, junk food, excessive working) but I wasn't worryng what I could eat, what pains were, whether I should arrange an important meeting for the morning or afternoon 'just in case' and so on. Whilst this may seem small change compared to what a lot of people are going through this is a big deal for me.
 
In the UK we don't have the same level of access to information or doctors that you have - I'm proud of having free healthcare but it really restricts choice and ability to get answers unless things are serious. I just spent 3 days without a BM and was getting worried it was an obstruction (mechanical or otherwise)- I couldn't even begin to know what an internal fistula would feel like and would only know through my annual check up?
 
So.......this forum is a Godsend but only if 'simple' or lowel level of disease activity questions can be asked and answered.
 
Didn't mean to go on but it's hard trying to get answers and I don't want to feel I can't ask questions here
diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........
 
Penny x


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/21/2009 6:26 AM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Stasi
Regular Member


Date Joined Jul 2009
Total Posts : 36
   Posted 7/21/2009 6:55 AM (GMT -7)   
I'm not sure I really understand what you're saying, but wanted to post what might be my own similar concerns.

Right now I feel like I'm trying to control an unknown disease. I keep reading that everything is particular to the sufferer, and what might work for one person won't work for another. Some people seem to change their diet, other people don't - so what's the "right" thing to do?

I had a colonoscopy last week, before that I was in constant, but low level, pain. However stopping eating for a couple of days and cleaning out my system seems to have re-set something. I've now got less general pain, but *much* worse pain when I eat certain foods. Two weeks ago though I could eat anything I wanted with no change in symptoms. Sure I had pain and diarrhea, but I had that if I ate pizza or soup, so I didn't see the point in changing diet.

I like food, I like pizza and curries. I want to eat them. I'm really torn on what to do, and don't feel there's information out there to help me decide.

With the number of things that have changed together, I don't know if I can say the Pentasa I'm taking is working or not. That bothers me. Generally I don't like taking medicine at all, and I regularly get prescribed things which I decide I won't take (e.g. anti-spasm tablets which I was prescribed after one spasm attack which has never recurred... I could have been taking them for months now without ever knowing if they were helping or not).

I've decided that I'm not going to worry too much about diet just now. I'm going to eat "safe" type foods for breakfast and lunch so I can get through work. But if I feel like pizza for dinner, I'm going to try eating it instead of being scared. If something causes me a bad reaction a number of times, I'll exclude it. That should maybe get over external factors like "was it the dinner I had yesterday, or the dinner I had today that's making the pain?"

I've also decided no vitamin supplements until I see my doctor and get them to do some blood tests to see if I'm deficient in anything. As for probiotics, I've bought some Actimel (because they were on offer), but I'm not being strict with it, they're tailored to the "every man", not to people with crohn's - they're not a treatment really, so for now I'm not going to treat them like one. I might not get the benefit I could from them, but I like the flavours :)

I too am in the UK, and so far feel very out of touch with the health service. I want a lot more information and advice than what I'm getting, but I have no idea how to get it.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/22/2009 10:18 PM (GMT -7)   
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.

uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 7/23/2009 2:44 PM (GMT -7)   
Keeper - thank you SO much for taking the time to explain all this in so much detail; it's just what I needed and I do understand things better. I thought I might have had to invest in anatomy & physiology reference books to try to understand the digestive system better - I have a need to understand things as clearly as possible; it's a control thing so CD isn't the best illness I could have got!! I may have other questions but thanks again for now
 
Nanners - thanks very much for responding again. I read your other post about feeling down and sick of being the strong one etc - I agree with many of the replies to that post and feel for you (you're fab and such a help to so many people). I'm really glad you had the courage to say those things because I have felt an affinity to your situation and was beginning to think that I should be able to cope better than I am since I don't have major symptoms or on bad meds like many here - I am the strong one and everyone (except my best friend) are waiting for me to be 'better' so I can resume my role and this forum has allowed me to show a bit of 'weakness'
 
Stasi - thank you also for taking the time to reply; I know how hard it is to give to others when you are in the middle of it yourself. I hope you too find your way through the maze - the UK system doesn't help much so I've got loads of info from this site but it is a bit of a puzzle and no-one's situation is the same (not good for a control freak like me!!) I hope this post and the reply from Keeper has helped some of your questions about diet too. I am still amazed how people want to help me and not need anything back.
 
Penny xx
diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........
 
Penny x

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