Crohn's and lots of scarring in colon: help!

[lente]

Hello,
I am new on this forum, 28 and live in the Netherlands.
Since January 2013 diagnosed with crohn's disease. After half a year on prednisone 1 started with Remicade, and this worked fine if 1 got the infusion every 7 weeks.
In the beginning of December I suddenly had a lot of pain after eating anything. Since then I haven't been able to eat at all, keep myself alive with 2 bottles of fluid nutrition a day wich are about 600 calories a day and 2 to 3 tramadol. At this point I have lost so much weight that my bmi has dropped to 17 (1,68 meters and 43 kilo).
So far I have had MRI, blood examination, angio of the blood vessels, gastric scoping, all of them didn't explain my pains.

This morning I had a colonoscopy and FINALLY the source of my pain is found! My colon is very severely scarred. The whole thing has shrunken together to 60 cm instead of the normal 150cm. The first 10/20cm are far more damaged then the rest of the colon, and of course also very painful! I slept through the whole examination (thank god for Dormicum) but my mother sais I screamed like a pig getting slaughtered... Wednesday I have an appointment with a professor to discuss the options.

Does anyone here know what options I have?
The only thing I can find is an operation, and I'd rather avoid that! Is there anything I can do to get the colon more flexible and decrease the amount of scarring?

Pfff... I thought to type a few lines about my problem, and now I see it became a whole story!

 

[UnXmas]

Hi, my BMI is 11, so I know how hard it can be to eat! Can you manage more nutritional drinks? Brands like Ensure and Fortisip you might be able to get hold of online if they're not available where you are. Do your doctors supply them for you?

I have been helped greatly by surgery; although it's scary, it can be really beneficial and improve your health substantially.

These are the issues I think in your place I would discuss with the new specialist you're to see - the cause of your weight loss and treatment options. Surgery may not be the only option available to you, but it is worth considering if your doctor believes it will be worthwhile. I hope your appointment goes well.

 

[lente]

A Bmi of 11?? That's really bad, considering how awful I feel on 18 you must be feeling really weak.
I am using Nutridrink and Nutrigain, they are the same as Ensure, but for some reason my intestines endure these brands better than the Ensure which I also tried. I can order any brand and flavor I like, my health insurance pays for them. Unfortunately even this type of nutrition makes me hurt pretty bad, that's why I only manage to drink 2 of them a day, and that's with 2 tramadol and 4x2 paracetamol a day!
My Gi was talking about feeding via a nasogastric tube, and maybe that's something I should try...

This morning I've been to the ER, as my belly started to hurt more and more by the hour. Doctors were scared that I had a perforation due to the colonoscopy I had yesterday. X-rays showed that there is no perforation, and they send me back home with extra oxicodon, which I may use 4x a day if needed. Let's hope I don't use them that much, and no longer than the weekend...

I still hope to avoid a operation, but I suspect the chance of that happening is very small as I still can't find any other treatments for the scarring of the colon... Tips for alternatives are very welcome!

 

[Clash]

There is no med that can fix scarring so the options are, like you said, limited. The surgery options vary depending on the severity, location etc. There is strictureplasty, a stretching of the narrowed area, then ofcourse resection. I do hope you are able to find relief soon

 

[chicky402]

Lente, I totally understand what you are going through . I experienced your symptoms before I had surgery. I have scarring all along my lower intestines. I lost a lot of weight from the pain and not eating. I know surgery is rough and difficult to recover from but it might do you a world of good. It doesn't hurt to see if there are surgeries available to help you. Best of luck.

 

[lente]

It's so nice to hear there are people who know my pain and my insecurities about the future! Of course... I'd not wish it for anyone, but it feels good not to be the only one.:ghug:

I already decided for myself that doing nothing about it is not an option. At this point I am not living my life, I am laying on the couch unable to do anything and I hate it! Always was a very active person... Working fulltime, living on my own in a reasonable big farm ( a cat, a Great Dane puppy, 5 mini sheep, 3 chickens, and 2 horses :hug: ) and loved to be doing fun stuff with my friends. I want that life back, and if surgery is the way to get it, then surgery is what I will get!

I probably will just have to wait and see what the professor and my own GI (he was on vacation this week) have to say about my options....

Is there anyone who noticed that certain foods where better durable with this type of scarring? I already ate gluten and lactose free with lots of fresh veggies from my little veggie-garden! Of course eating anything is not an option al long as I can't even tolerate the "fluid food". But if the doctors and I decide that we remove only the piece of colon that is so very painful, the rest of my colon will still be scarred, so I'd love to keep that part as healthy as possible and avoid making it angry with anything!:ybatty:

 

[UnXmas]

A Bmi of 11?? That's really bad, considering how awful I feel on 18 you must be feeling really weak.

I weighed myself and worked it out again today... bmi now 10.9. I honestly don't know anyone as thin as me.

Is there anyone who noticed that certain foods where better durable with this type of scarring? I already ate gluten and lactose free with lots of fresh veggies from my little veggie-garden! Of course eating anything is not an option al long as I can't even tolerate the "fluid food". But if the doctors and I decide that we remove only the piece of colon that is so very painful, the rest of my colon will still be scarred, so I'd love to keep that part as healthy as possible and avoid making it angry with anything!

A low fibre, low residue diet, or a diet of only soft foods may help. Veg can actually be one of the worst things to eat due to the fibre content.

Do you actually feel better without lactose or gluten? If you're not lactose intolerant and don't have coeliac, there's no reason to give up those foods. Some people do have problems with them, but certainly not everyone with Crohn's. Dairy is one of my staple foods, as ice cream, yoghurt and other milk-based pudding are very easy to eat and digest if you don't have a problem with lactose.

 

[lente]

I tried a gluten and lactose free diet when my crohn's was under control, but I kept having an awful bloated belly after eating. Then I noticed that the bloating was al lot less when I ate just vegetables and fish or meat, so I tried gluten free, and that helped a lot.
But sometimes the bloating was stil occurring, so I started with a food diary and noticed quite quickly that the bloating only occurred after consuming any milk products. I tried replacing them with lactose free products and the bloating has vanished completely! :dusty:
I live on the border of The Netherlands and Germany, and especially in Germany there is a lot of choice in gluten and lactose free products, so that makes it very easy to stick to this diet.

When my pain started in December I lived on lactose free yoghurt, puddings and that type of foods, they were the only products I could eat the last 2 weeks. After those weeks I haven't been able to eat anything, sometimes I try with some yoghurt or soup, but no luck so far...

I didn't know that veggies can be irritating for my bowel! That's definitely something to monitor as soon as I start eating again! Do you notice any difference between raw or cooked vegetables? I get obstipated quite easily, so low fibers is not ideal, but it's worth a try. If needed I can adress this problem with movicolon, which I already need to use regularly anyway.

 

[Karajan]

Sub total colectomy

Hi I to had a lot of scarring in my colon, I had the small intestine joined to my rectum. Go to the toilet the same way as everyone else does. When they removed the colon it was riddled with granulomas a sure sign for crohns. I have around 5 BMs a day when I am well. With all the scarring you have you could obstruct. Better to get rid of the troublesome part. I got a good few years remission out of this op once things had settled down. However crohns has come back next to suture line and is causing many probs and a lot of obstructions and adhesions. Good luck.:smile:

 

[lente]

Thanx for this hopeful message!
For Crohn's I only read about removing colon and putting a stoma on the end of the small intestine.... Very glad to read that it actually is possible to connect the small intestine to the rectum!
The reason they choose to go for a poopbag instead of rejoining the small bowel to the rectum are the reoccurring inflammations wich are sure to happen with Crohn's. I thought it was a very weard reason because the way you attach the small intestine has nothing to do with how fast the inflammations reoccur as far as I know! If it comes down to operating I will certainly try to get them to do it the way they did for you!

Sad to hear you're not doing al well anymore... Hope you wil be in remission soon, and the damage to your small intestine will be minimum. I assume you are pretty scared about the consequences of this flare... Awful to live with that much insecurity! :hug:

Think it might be best to try and find out if there is a specialist in Holland in this type of operations. Maybe my own hospital won't like it if I choose to do the operation elsewhere, as I also work in this hospital as a dialysis nurse... But nothing but the best for my body! :thumright:

 

[UnXmas]

I didn't know that veggies can be irritating for my bowel! That's definitely something to monitor as soon as I start eating again! Do you notice any difference between raw or cooked vegetables? I get obstipated quite easily, so low fibers is not ideal, but it's worth a try. If needed I can adress this problem with movicolon, which I already need to use regularly anyway.

They can most definitely be bad! Cooked veg is usually a lot better, and tinned fruit is better than fresh fruit. A lot of people with digestive problems have trouble with fibre, meaning fruit, vegetables, whole-grain cereals and nuts and seeds are some of the worst foods to eat, but there are many creative ways of getting fruit and veg into your diet without the fibre, if you do find that to be a problem.

For Crohn's I only read about removing colon and putting a stoma on the end of the small intestine.... Very glad to read that it actually is possible to connect the small intestine to the rectum!

I had my colon removed a few years ago, with no stoma, but it wasn't any help. Then last year I got an ileostomy and I love it! It's given me so much freedom that I didn't have before. Don't write something off just because it involves surgery. It frustrates me when stomas are viewed as a last resort and something everyone should be trying to avoid. I wish I'd had mine ages ago.

 

[lente]

Great to hear that you are doing so well with your stoma! I can understand that you're very happy with it when prior to the stoma you have had a long period of suffering.
For me it feels different...
I've had diarrhea and pain since Mai 2012, finally went to see my doctor end of December 2012 and got diagnosed with crohn's January 10 2013.
From the moment i was completely prednisone free I felt like the old me. Got the remicade every seven weeks, occasionally needed to take movicolon and couldn't eat any Chinese food. Other than that I never even noticed the crohn's!

So the fact that I might need surgery right now is a very big disappointment and shock for me. If the surgery also means I'm getting a stoma... I don't even want to think about it if I'm being honest! I would feel betrayed by my body and don't think I'd be able to accept it... ale:

 

[UnXmas]

Has a doctor actually even told you you might need a stoma?

 

[lente]

After the colonoscopy the doctor said something about it. Don't know what he said exactly because I was still sleepy from the Dormicum and my mother was visiting the bathroom right at that time...
Afterwards I feel like it's a bit silly to say something like that to a patient who is still half asleep on meds!
I asked my mom weather they said anything about it during de examination, but according to her they didn't say anything about the options to get rid of it.

 

[Kev]

You may have little or no recourse... If your disease is still active, surgeons generally won't try to remove just the scar tissue... unless you become obstructed, or experiencing leaky gut syndrome. I have my disease stopped dead... no progression or deterioration in 7 years... but none of the surgeons will attempt to remove my scar tissue, despite how painful it is. IF your situation merits, then surgeons CAN remove some/all of your colon. If you have UC, and your colon is removed, then the problem is solved. If you have Crohns (colitis) and they remove your colon... it can (may) come back as Crohns disease.

I have become used to the pain. I don't like it, but my disease isn't progressing, and I've come to accept it (the pain) as part of my day to day life now. I know of no way to lessen the scarring, or the pain it causes. If you happen to come across one, let me know

 

[lente]

Hello Kev,
I'm sorry to hear that you've been having to live with so much pain for that many years. How You manage to do that is a mystery to me...
I get in so much pain after eating, I curl myself up to a little ball, get dizzy and nauseas, sometimes I even pass out! With the pain meds the passing out is gone, but otherwise there is little improvement. Tried to eat some yoghurt yesterday, and it resulted in taking an extra oxynorm...

When I was diagnosed with crohn's last year, my intestines were inflamed from my stomach all the way through my small intestine, right down to the end of my colon. So it's definitely a crohn's, just like my niece who was diagnosed 2 years before me.

I don't have much hope for the professor Wednesday telling me about some miracle treatment which doesn't involve surgery. But if I come across a new type of treatment which could work for some people, I will be sure to tell you about it!

I see you are taking Ldn. I assume it's working for you since you are taking it for quite a few years? Did your GI approve of this treatment?
I tried to talk about the Ldn with my old GI when I was first diagnosed, but she had never heard of the stuff and promised me to look in to it. Asked her again half a year later, and she said there was not enough evidence to start prescribing it to me.

 

[lente]

I went to see the professor today...
Surgery is not an option for now, as there is lots of scarring but no narrow passages. The scarring shouldn't be painful on itself, so why I screamed that much during the colonoscopy is a mystery. There are no inflammations at this point, which means that prednisone is also not an option.

The only thing they can try is to start feeding me by catheter. They hope my intestines will come to rest that way and "reset" them to accept foods.
Unfortunately they are very scared I will get refeeding syndrome, so it needs to be done in the hospital for at least a week. I hate being hospitalized because of my animals, but if it needs to be done... :eek2:

If feeding via catheter doesn't have any effects on my pain, they don't have any other options for me. So I hope and pray it works!

Does anyone have any experience with refeeding syndrome?
And has this type of treatment ever worked for anyone?

 

[UnXmas]

I've heard of refeeding syndrome being a concern for people with anorexia nervosa, though not with Crohn's, as people with anorexia sometimes starve themselves almost completely, but when hospitalised are immediately put on a high-calorie diet. People with Crohn's don't usually go to such extremes. I've no personal experience of it though.

I thought it could be avoided by supplementing certain nutrients and increasing food intake gradually? I'm not sure why you'd need to be hospitalised, maybe you should ask your doctor to explain the reasoning behind that advice?

Is a catheter the same as feeding via IV? I had TPN over a short period when I suffered from post-surgical ileus. I had no problems with it, it was painless, except very briefly on inserting the IV. There was talk about sending me to an anaesthetist to put in a central line to be fed that way, but in the end I just had an IV in my arm.

 

[lente]

UnXmas: thanks so much for endlessly trying to answer my questions, it's very much appreciated!

The refeeding is indeed a big concern for patients with anorexia nervosa. Doctor explained that there are guidelines in the Netherlands to assess which patients are in high risk of developing this syndrom. If you have a Bmi under 18, have lost 10% body weight in 3 months, or have been taking in less calories then 500 a day over a period of 2 weeks you are considered a high risk. Also people with ibd are more at risk since our small intestine usually has more trouble getting vitamins and minerals extracted from our foods.
Since I tick all of these boxes they want to have me hospitalized...
I tried to get them to the point that I could do the feeding at home, and come to the hospital once or twice a day to let them take blood tests, but they absolutely refused. According to them I will need an IV with vitamins and minerals for at lest the first four days, won't even try to start feeding me without it! I can understand their concerns, but have not heard of a crohn's patient actually getting sick with refeeding, so I still wonder if this isn't being a bit too careful...

The catheter I will get is a tube that goes into my nose, through my stomach into my duodenum. I don't know what they officially call it in English, I'm sorry!
It's not the tpn you have had. This will still pass through my bowels, but in a steady and very slow pace. With that approach they hope my intestines will "learn" to accept food again without getting very annoyed and giving off pain signals. It's actually trying to train the bowels if I've understood it correctly.

"funny" thing... I work as a specialized nurse for dialysis patients, and usually we assist our doctors with inserting the central lines for patients who need refeeding, as our doctors and us nurses are very skilled in it because we put in central lines for dialysis purposes all the time. Weird to think about the fact that I could very well become a patient of my colleagues and doctors at any moment in time...

 

[UnXmas]

I'm not sure exactly what the catheter you describe is, but it sounds like an NG tube, except it's going further than your stomach? Have you looked at this support group: http://www.crohnsforum.com/showthread.php?t=48817 ? Perhaps what you're having is something like this? If it's any comfort at all, I used to be terrified of having a tube through my nose to my stomach - the idea of it just made me feel faint. As it turned out, it was so quick and pretty much painless. It was uncomfortable being inserted, but it was literally just a minute and then it was in. It was kind of uncomfortable for the first day, like something stuck in my throat that I couldn't quite swallow, but it only a mild discomfort. After the first day I couldn't feel it at all, and coming out was even easier and quicker than going in. I think what I had only went as far as my stomach though.

It does sound that it probably is better to be safe than sorry and stay in hospital - you must have had a very hard time if your doctors are concerned about refeeding syndrome. It does sound like you really need some medical intervention to get your digestive system working again and hopefully the stay in hospital will be worth it if it gets you back to a point where you are nourished again.

 

[lente]

That's exactly what it is!
Thanks a lot for the link, I've posted my questions in this support group. Hope there's someone there who can give me some more information about it.