Strictures - help!

[Curly]

Hi, I have one, possibly two nearly closed strictures at the moment and am really struggling with what to ingest in terms of liquids. I'm now only having strained soup, milkshake, a few mouthfulls of rice pud on a good day, forti-juice gives me pain if I drink them quickly. Therefore am not getting anyway near the calories I need and although not a wafe, I don't want to lose anymore. I vomited after a hot choc the other night so quantity and texture is a problem. Liquid can't be thicker than milk consistency.

Any ideas?

Also any experiences of having stricutures and surgery?

 

[Kev]

Do milk or dairy products bother you? Just a thought that dairy products may be making matters worse. Here, several manufacturers often liquid formula baby vitamins... some other supplements.. for infants. as for caloric intake, you might try products like Ensure, etc.., even if forced to dilute them with tap water. Gatorade, PowerAde, etc.. may help keep electrolytes in balance.

I would expect, as happened to me, that inevitably you wind up in Emerg..
(got to the point where I couldn't even go tap water). Surgery for me has always been relatively easy and uneventful. Can't say if thats typical for all.

Just that, operations barring complications, major post op infections, etc., operations/surgeries AREN'T the 'bogeyman' we conjure up in our minds, OK? And if surgery IS inevitable, then it's best to go in planned/prepared Vs in emergency. OK?

 

[soupdragon69]

Cant your GI or Dietitian organise prescription of elemental 028 Extra for you? Its something that I use regularly and is not milk based but has all the nutrients we need. It comes in different flavours so you should be able to find at least one you can drink.

3 flavours come in 250mls cartons: grapefruit, orange and pineapple, forest fruits.

The others come in a powder format and you make them up with water. Orange, lemon and lime, cherry, citrus, grapefruit, blackcurrant to name a few off the top of my head.

I find the cartons are a bit thicker more milkshake consistency and prefer the powder format. Really like the citrus and orange.

Have a workmate that can only drink them at room temp when her crohns flares. They are supposed to be cold.

See what you think but they are used more and more by gastro cons here in the UK and am surprised your team havent suggested them Curly.

It was my GI cons that suggested them, the dietitian gave me samples to try and then wrote/faxed my GP with the preferences for them to prescribe.

Feel free to PM me if you have any other questions. Hope you get some relief on this front at least prior to surgery.

 

[Curly]

Kev - you could be right about dairy and I have really cut back the dairy over the last two days and haven't had as much pain. I am also having miso soup which seems to settle things, no idea why! I kept going with the dairy and have ended up eating much more than normal and completely over balanced on that side just to get some cals. As for emergency treatment I was told just to get to a hospital if needed be. Unfortunately where the surgery would take place is further away and I probably wouldn't get there if in a state. So have really been trying not to worsen anything so that it can be elected and planned. It's good you say that surgery is not the bogey man we all think. I certainly hope not anyway.

Soupdragon. I saw a dietician 3 weeks ago who suggested the E028 but I was stubborn and wanted to try and carry on. Unfortunately I think I've exhausted everything I can do and couldn't get hold of her at the end of the week to sort it out. So until normal service resumes after the hols I'm stuck! Also if I start it on Tue, I can only have two drinks (need to have 6) to ease in to it, wed I have to starve and have diarrhoea all day for the colonoscopy on Thursday, so whatever happens it'll be Friday before I can start them properly. You are right though, I need to sort it out. I just hope they get on with it quick and hope I'm not being too optimistic about the outcome.

Like your workmate I can't drink anything cold either, it sends me immediately into spasm.

 

[soupdragon69]

Well at least if you start the 028 Extra you will have something on board. It was one of my options originally treatment wise with the centre I am at along with steroids or pentasa etc.

I ended up on it from xmas 06 til july 07 and still use it intermittently. Dont think I have had a full 2 wks without it to be honest at some point in my day. Feel very "safe" with it and know its there if I need it. I am supposed to have 10-12 a day and can only manage a max of 8 on a good day. The other thing is if you are on it you have less of a clear out with prep I have found because it is absorbed in the first metre of small bowel... Just a thought..

Ooh another thought! Make sure you drink extra water with it during the day as we get 70% of our fluids from solid food. As a result of not having it you can drop your bp and faint due to less fluid volume circulating. I also found my heart beat was irregular at times because I wasnt getting enough potassium and other electrolytes til I was on the E028. Hope you get started soon or at least by end of the week as you say.

Let me know how you get on eh? Thinking of you.

 

[Curly]

Well at least if you start the 028 Extra you will have something on board. It was one of my options originally treatment wise with the centre I am at along with steroids or pentasa etc.

I ended up on it from xmas 06 til july 07 and still use it intermittently. Dont think I have had a full 2 wks without it to be honest at some point in my day. Feel very "safe" with it and know its there if I need it. I am supposed to have 10-12 a day and can only manage a max of 8 on a good day. The other thing is if you are on it you have less of a clear out with prep I have found because it is absorbed in the first metre of small bowel... Just a thought..

Ooh another thought! Make sure you drink extra water with it during the day as we get 70% of our fluids from solid food. As a result of not having it you can drop your bp and faint due to less fluid volume circulating. I also found my heart beat was irregular at times because I wasnt getting enough potassium and other electrolytes til I was on the E028. Hope you get started soon or at least by end of the week as you say.

Let me know how you get on eh? Thinking of you.

Thanks so much it's a real help to have someone understand! The only meds I'm on is prednisolone. I have been on 40mg but have reduced it to 25mg now. It sounds like you spent a long time on E028. Can you explain to me what you mean about 'have less of a clear out with prep...'.

You are so right about the water. I have become really aware of how dehydrated I am. My skin is wrinkled on my hands and my face feels tight. I get quite lightheaded as well. I work out my points in Weightwatcher style (as did it for ages to lose weight and it makes sense to me) and last couple of days I have only had 8 points worth of cals instead of 20. So need to get E028 sorted.

I was blown away when you said about the irregular heartbeat as I had been putting that down to the steroids. Coincidently, I was looking through You are what you eat book and there is a recipe for potassium broth, where you cook all the veg and then strain it. So will try that tomorrow and ask for the E028 on Tuesday. I wonder if I can take it during the day of clear liquids before the colonoscopy?

Today I have cooked for my family: poached eggs on organic toasted bread, a full roast dinner yorkshire pud and gravy included, and for evening meal, avocado and goats cheese salad with garlic bread. I didn't eat a morsel. It all looked rather nice too! You can see how much I like cooking and eating...... This is a very hard place to be!

It sounds like you mix and match the drinks with your normal diet at the moment. Do you use it when you have more symptoms on some days? The dietician said that although it's not very nice, she has a hard time getting people off it. This has a ring of truth then!

I'll let you know how I get on.

 

[soupdragon69]

Well on the prep front you end up running to the loo lots to clean out your gut for them to see the lining clearly. With the E028 there is less "solid matter" for want of a better expression and so you pass more water because as I said earlier it is absorbed in the first metre of your small bowel (because it is broken down into amino acids and less work for your body to absorb) and allows the rest of the gut to rest and heal and you win on all fronts as you get the nutrition you need, (although you need surgery for strictures it may help other areas) - again keep your clear fluids up that day!!

My other thoughts if you havent had prep before now is get yourself some soft toilet wipes/paper that is moist and a jar of vaseline as it helps to protect the area with going so much, dont wipe but dab at the area too...

Had a feeling you might have had the heartbeat issue as it is one of my tell tale signs that I am not absorbing well and blood tests in hospital last year at the same time showed it was my potassium that was low. It may not be that for you but that is how I know for me if that makes sense?

You wont be able to have the 028 Extra (make sure you get the Extra and not ordinary as well as it has more nutritional base according to my gastro dietitian) the day of your prep but you will find it wont be so sore on you because you will have less to pass overall as I said at the start of this post.

As for taste of the 028 I have to say it is an aquired taste but find now I cant tolerate too much sugar or salt in my food as my taste has completely changed. I am not surprised at what the dietitian said. My team have said you should by rights be using it for 1-2yrs after intitial using it because we need the extra nutrition. They have told me that some Crohns patients end up using it for many years or their lifetime because it helps them to cope when not doing so well. Do you know Carrie Grant? She and her husband coach singers on the TV shows like Joseph here... she has Crohns and my gastro nurse was telling me she uses 028 regularly and it helps her to cope. Its nice to know of someone famous here that is in a similar boat isnt it?

As for mixing and matching yes I do and its very easy. I know that 250mls carton gives me 215 calories and 500mls sachet made up with water gives me 427 calories roughly. Hope that helps... if you look at the food threads you will find my current foods because I have other health probs to take into account. If anything else it should help you to talk more to your dietitian to help formulate a plan for YOU Curly. That is what it is all about and I only posted mine to try and help others see how much dietitians can help if you keep at them!

Like I said earlier, feel free to PM me any time and keep us posted on how things go. Will be thinking of you in the coming week. ((hugs))