Hoping to avoid surgery

[Adam in Hawaii]

This is my first post here, and I was wondering if anyone has a situation similar to mine. I was diagnosed with Crohn's in 2003, but have never had diarrhea - just the opposite. Anyway, I'd been on Asacol (mesalamine) for 10 years with flares only once every few months or so. (For me, a flare would be constipation with noticeable mucous when I wipe.)

About 6 months ago, I had a follow-up colonoscopy and the IC valve was too narrow for the scope to pass. Doc put me on Prednisone and had another colonoscopy a couple months later. She dilated a stricture in the AC, but the IC valve was still too narrow to attempt to dilate. The inflammation had gone down a bit though. By the way, my Crohn's appears to be only in the terminal ileum; enterography showed normal small intestines.

For the past few months, I've been quite bloated and just not digesting at a normal pace. Not constipated, but bowel movements are less than half of normal volume. I've been back on Prednisone for the past few weeks - with some improvement - and I'll be starting Humira on Monday.

My doctor's been very proactive in consulting recognized IBD experts about my case. She's pretty sure I'll need surgery within a few months, but we're trying to be absolutely certain first. There's a very slim chance that Humira can ease the strictured area if it's due to inflammation, but unlikely, since my blood tests have shown low inflammation levels since being on the Prednisone. So for now, I'm going to try the Humira and see if there's any improvement. Then have another colonoscopy in a few months. If the valve is still severely narrowed and I'm still not digesting normally, I'll probably have to get the resection.

I've read a lot of scary stories on this forum about post-resection diets and bowel habits. Honestly, I'm not at all concerned about the surgery itself, or recovery/pain. But I LOVE FOOD! All kinds. Especially Thai, Vietnamese, Burger King, spicy, deserts, etc. I also drink (rum & coke and beer, mostly). I dread the idea of having to eat nothing but rice crackers and oatmeal for fear of running to the can 10 times a day. However, I also read a few stories from folks who haven't had much trouble (diet-wise) since their surgeries.

So I'm curious to hear from anyone who may have a similar experience. What can I reasonably expect if (best case scenario) they only have to remove the IC valve and maybe a few inches of TI? Without the valve, but still some ileum, can bile salts still be absorbed enough to keep diarrhea at bay? Just how good are the meds to keep the runs in check if it's a problem?

I know many people have written about how much better off they are after having resection surgery. But since I've never really had typical Crohn's symptoms, the potential bowel changes scare the crap out of me (pun intended). Still hoping for a miracle.

 

[Justanothercp]

Adam,
I have had a resection, and I went back to eating pretty much whatever I wanted. Now I wish I would have been more aware....
I believe you would have a good chance of eating whatever you want, but then you will start the cycle of low trade inflammation again, and may likely end up having to takes Meds and another surgery sooner rather than later. That is a lifestyle choice you will have to make.

 

[Adam in Hawaii]

Adam,
I have had a resection, and I went back to eating pretty much whatever I wanted. Now I wish I would have been more aware....
I believe you would have a good chance of eating whatever you want, but then you will start the cycle of low trade inflammation again, and may likely end up having to takes Meds and another surgery sooner rather than later. That is a lifestyle choice you will have to make.

I guess I can live with a reasonable change of diet. I just get depressed reading about some of the drastically spartan diets some folks need to be on. I guess what I'm looking for is some reassurance that most of those cases are because of removal of much more intestine than I'm likely to face. I'm assuming that the less that's removed, the more likely to have regular bowel movements. Or is it much more dependent on the individual?

 

[DJW]

Hi Adam and welcome.

I've had many surgeries. Just avoid problem foods. As I get older I have to eat better so I can feel better.

I suggest keeping a food and symptom journal to pinpoint problem foods. I don't think an overly restrictive diet works for everyone but with crohns it is important to eat health. Ultimately the decision is yours.

 

[Justanothercp]

Adam,
I think you are right, it is different for everyone. I have never really had a problem with diarrhea like a lot of people. Mine has been mostly strictures (pain, bloating etc...)
I didn't make the diet changes until I was bad enough that I thought I might be headed for a second surgery... I think your symptoms dictate what you are willing to do!

 

[Adam in Hawaii]

Adam,
I think you are right, it is different for everyone. I have never really had a problem with diarrhea like a lot of people. Mine has been mostly strictures (pain, bloating etc...)
I didn't make the diet changes until I was bad enough that I thought I might be headed for a second surgery... I think your symptoms dictate what you are willing to do!

Thanks. I'm feeling a little more comfortable about the prognosis, especially considering the relatively small area (hopefully) that my Crohn's is affecting. Also, that I've never had diarrhea symptoms in the past. I doubt they'll have to take out any of my colon, except perhaps a couple of inches right next to the IC valve, and probably not too much of the ileum either.

I'll be making an appointment to talk with the colorectal surgeon in the next couple of weeks. Just a consultation at this point. Hopefully I won't be needing her services.

 

[highlandsrock]

Hi Adam

I had the operation removing 14cm of small bowel and the IC valve. One result of having the operation I don't see widely discussed is Bile Acid Malabsorption which causes diarrhea. If you have time then take a look at my blog where I go through it in more detail. In the last 5 minutes I put up a new post following a visit to my consultant to discuss.

I control my system with 2 Loperamide tablets a day and live a pretty normal life. I do try and avoid onions and garlic, if I can, and the one food guaranteed to set me off are beefburgers.

 

[wild_one353]

Talk to your doctor about a fecal transplant.

I know some people don't want me to express my opinions freely on this website, but it's been stated in medical journals, people have gone into remission with fecal transplants. I suppose you could wait for more examples to be shown in a few years, but nothing anywhere has ever created results this good.

 

[Jennifer]

It's unknown at this point if fecal transplants are a cure and you know that wildbill_52280. In your opinion it's a cure but the fact is that some achieved remission, some had improved symptoms and some had no change at all. The remission timeline was from 1-13 years.

As I stated before, my resection put me in remission for over 14 years. I would never claim that it's a cure because it's misleading and entirely untrue as many people on the forum have mentioned a relapse at some point after their surgery.

Fecal transplants have potential to be more beneficial in the future possibly but at this point they are not a cure at all but have the potential to help some patients achieve remission only. It also only helps when you have active inflammation but will do nothing for scar tissue which is the main concern in this thread.


Adam in Hawaii - Hopefully you wont need surgery but if you do, some people have mentioned chronic diarrhea after their ileocecal valve was removed but not everyone has this problem. In total I had 8 inches of my terminal ileum, cecum and ileocecal valve removed during my resection. I never had to deal with constant urgency and only followed a low residue diet for a few months after my resection. I tend to have a formed BM once a day. If you do experience chronic diarrhea following surgery then talk to your doctor about prescribing Lomotil and see if that helps. Keep us posted.

 

[wild_one353]

ok jennifer, ill do this the right way then. i wish i could just express my opinion though without backing everything up, but i guess it's good that you make me go through a few extra steps. Ive just become so lazy after a while you know haha. im totally not an arrogant know it all making stuff up, i truly have done my research well beyond reading just one paper like the one you have below, i have so many references.

Curr Opin Gastroenterol. Jan 2014; 30(1): 97–105.

"We present here an example of a patient with C. difficile infection(CDI) and Crohn's colitis treated with FMT 12 years ago in whom not only the CDI but also Crohn's colitis was cured"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3868025/

 

[DJW]

The researchers use the term cure but that's misleading. I had twenty year remission...but I wouldn't use the word cured...but these researchers might.

I need to do more research on FMT.

 

[wild_one353]

The researchers use the term cure but that's misleading. I had twenty year remission...but I wouldn't use the word cured...but these researchers might.

I need to do more research on FMT.

when they say cure, their judgement carries some serious weight, but of course it would be nice to see more examples. This is definitely not a joke though, they are not trying to simply throw these terms around. borody has been messing with fecal transplants for 25 years, he could have made stuff up years ago if he wanted to.

how would you define your remission then? remission without drugs? nor any dietary adjustments? I suppose that could happen with a mild case of crohn's, typically the people who are getting these fecal transplants have been the worst cases resistant to meds, not sure if this case was though.

 

[Jennifer]

You should have shared the sentence after that one.

"The implication of the influence of C. difficile and other infections or alterations in the GiMb (gastrointestinal microbiota) on induction and maintenance of Crohn's disease activity is a subject of immense current interest."

Once the C. difficile was treated with a fecal transplant, the Crohn's colitis seemed to go away, possibly into remission or maybe they were misdiagnosed because no other person has ever been cured.

The fact is that they aren't interested in how the fecal transplant may or may not have worked for this woman's Crohn's colitis but how curing the C. difficile affected the disease course of her Crohn's colitis because we all know that C. difficile can be treated with fecal transplants. So you're still jumping the gun by calling it a cure.

"Although these results are promising, they confirm that FMT response in ulcerative colitis is not as robust as in CDI (C. difficile), and again suggest that recurrent FMT infusions are required."

"Vermeire et al.[29] reported no significant clinical or endoscopic improvement at 8 weeks in four patients with refractory Crohn's disease administered FMT via nasojejunal tube three times over a 2-day period. Transient recipient GiMb changes were observed in all patients (weeks 2–4) returning to baseline microbial composition by week 8. These findings along with other studies suggest that Crohn's disease has an increased resistance to FMT relative to ulcerative colitis, although preliminary data suggest that intensive, prolonged FMT may result in a clinical response and sustained GiMb transformation in some Crohn's disease patients."

It doesn't work as well for UC as it does for C. difficile and it doesn't work as well for Crohn's disease as it does for UC. That's anything but a cure. A promising treatment for some but not a cure.

It's absolutely irresponsible for those researchers to call it a "cure" because of the weight their voices carry. It's not a cure.

 

[wild_one353]

You should have shared the sentence after that one.

"The implication of the influence of C. difficile and other infections or alterations in the GiMb (gastrointestinal microbiota) on induction and maintenance of Crohn's disease activity is a subject of immense current interest."

Once the C. difficile was treated with a fecal transplant, the Crohn's colitis seemed to go away, possibly into remission or maybe they were misdiagnosed because no other person has ever been cured.

The fact is that they aren't interested in how the fecal transplant may or may not have worked for this woman's Crohn's colitis but how curing the C. difficile affected the disease course of her Crohn's colitis because we all know that C. difficile can be treated with fecal transplants. So you're still jumping the gun by calling it a cure.

"Although these results are promising, they confirm that FMT response in ulcerative colitis is not as robust as in CDI (C. difficile), and again suggest that recurrent FMT infusions are required."

"Vermeire et al.[29] reported no significant clinical or endoscopic improvement at 8 weeks in four patients with refractory Crohn's disease administered FMT via nasojejunal tube three times over a 2-day period. Transient recipient GiMb changes were observed in all patients (weeks 2–4) returning to baseline microbial composition by week 8. These findings along with other studies suggest that Crohn's disease has an increased resistance to FMT relative to ulcerative colitis, although preliminary data suggest that intensive, prolonged FMT may result in a clinical response and sustained GiMb transformation in some Crohn's disease patients."

It doesn't work as well for UC as it does for C. difficile and it doesn't work as well for Crohn's disease as it does for UC. That's anything but a cure. A promising treatment for some but not a cure.

not jumping the gun, i suppose they are leaving some room open for the possibility that c. difficile may have had some role in the crohn's going away, but i think that it is unlikely. for the record what we know is that the person got a fecal transplant and the crohn's was cured, it is very likely the fecal transplant cured it, as it has been shown to rapidly put crohns in remission already.

Why would anyone ever think it was the c. difficile infection, 20% of people with just c. difficile die from it, why would that EVER cure crohns? and the 80% that take antibiotics to treat c difficle, have a hard time getting rid of it, its unlikley that C. difficile cures crohns disease.

what they are trying to do is report the facts, and present some theories. the theories that c difficie cures crohn's disease is simply an unlikely one, it was more likely the fecal transplant. you are also going to have to explain why there also so many cases of remission in crohn's because of fecal transplants. these people did not have c difficile, so this demonstrates more of the role of fecal transplants.

 

[DJW]

I hope FMT is the answer. I was twenty years with no meds and no special diets. Scopes and biopsies were always clear. I had some scare tissue that caused obstructions. Nothing was found during surgery.

I was diagnosed at a young age with severe crohns complete with peri-anal disease and toxic mega colon. Meds didn't work. Surgery ( and lots of them) was the only relief I got. I jumped at everything that was offered as a solution.

I honestly don't have anything against FMT. I do hope it works. But I think researchers using the term cure is misleading.

 

[wild_one353]

I hope FMT is the answer. I was twenty years with no meds and no special diets. Scopes and biopsies were always clear. I had some scare tissue that caused obstructions. Nothing was found during surgery.

I was diagnosed at a young age with severe crohns complete with peri-anal disease and toxic mega colon. Meds didn't work. Surgery ( and lots of them) was the only relief I got. I at everything that was offered as a solution.

I honestly don't have anything against FMT. I do hope it works. But I think researchers using the term cure is misleading.

Glad to hear you opinion and experiance my friend, this helps. For all fairness, at least I'm referencing medical journals and experts, I was always justified to report this. For the off chance that you work for a drug company and this is just also a made up story, I'll consider all possibilities.

My personal story is that i think it's more then a coincidence that i took antibiotics right before i developed crohn's and the exact antibiotics i was on were linked to IBD, and now they are finding missing bacteria in the GI tract of crohn's which are responsible for regulating inflammation. and thsi also isnt the only report of a successful treatment with fmt, it's clear it can treat crohn's but may be a little less clear it can cure it, but here is the first official report, its a great start.

 

[Jennifer]

"...immense current interest," means they are extremely interested in what happened and they feel that C. difficile played a role somehow. No one is calling C. difficile a cure for Crohn's but they did say that it's possible that "C. difficile and other infections or alterations in the GiMb (gastrointestinal microbiota)," may be the cause of Crohn's and may maintain disease activity.

If it were a cure then why didn't the fecal transplant work for all those other people?

Just because some researchers claimed it was a cure because one person seems to be, to them, doesn't mean it is a cure so no one should claim it as such.

 

[wild_one353]

"...immense current interest," means they are extremely interested in what happened and they feel that C. difficile played a role somehow. No one is calling C. difficile a cure for Crohn's but they did say that it's possible that "C. difficile and other infections or alterations in the GiMb (gastrointestinal microbiota)," may be the cause of Crohn's and may maintain disease activity.

If it were a cure then why didn't the fecal transplant work for all those other people?

Just because some researchers claimed it was a cure because one person seems to be, to them, doesn't mean it is a cure.

this is why the studies continue, lot's variables we don't understand yet. I'm saying it is VERY LIKELY a cure, so likely. The donor stool sample they use have lots of variability in teh concentration of bacteria so dosing is an issue, this alone could explain why the results could vary greatly, until we can manufacture the right bacteria, that's when the results will be more uniform.

im sure nobody recalls the time i said that oral fecal transplants will be faster and more effective then enemas but guess what they were!! if you keep track of my reputation you will see that im really no joke. That sounds stupid i know and its not a reasonable argument, but my predictions have mostly come true thus far not because I'm psychic but because I've studied and read so much, i would love to rewrite my fecal transplant thread so it it easier to understand the state of the research, i just don't have the time or energy lately, i'll eventually get around to it though. read more in the link below.

nice chatting with you all though good night!!

 

[DJW]

Glad to hear you opinion and experiance my friend, this helps. For all fairness, at least I'm referencing medical journals and experts, I was always justified to report this. For the off chance that you work for a drug company and this is just also a made up story, I'll consider all possibilities.QUOTE]

Haha. Okey you got me on that. Ultimately I defer to my GI specialist. All I'm saying is I was in deep clinical remission for 20 years. Nether I, or my GI specialist would every claim I was cured.

In all fairness, I don't know the quality of research you're referencing. Poor research methodology always yields false positive results.

I will ask my specialist to see if I'm a FMT candidate. I'll hit the university library to do more FMT research. And I'll ask the question at the Gutsy Learning series put on by Crohns and Colitis Canada this week at McMaster University.



BTW: I wish iI worked for a pharmaceutical company. I could use the money.

I'd love to be cured .

 

[DEmberton]

Adam,
I think you are right, it is different for everyone. I have never really had a problem with diarrhea like a lot of people. Mine has been mostly strictures (pain, bloating etc...)

Same here. I was getting some diarrhea, maybe once every 10-14 days. When they finally diagnosed me with something (CT scan showed a 20cm terminal ileum stricture), the GI said they could treat it with drugs, but in his opinion once things had got that bad surgery was the best option. Can't say I was keen, but then I'm not keen on taking drugs either, so went for the surgery. It may well be the best thing I've ever done, but 3 months later and I am starting to get some mild symptoms again so probably need the aza they're threatening to give me.

But no diarrhea, and I've been eating anything I feel like.

I guess it depends how bad things are for you now. As well as the pain, bloating, gurgling and generally feeling sick every day I was also anemic and losing weight at an alarming rate, so I felt drastic action was probably warranted.

Good luck with it.

 

[Nancye50]

Your case sounds a little like mine. I'm so glad I haven't had typical Crohn's symptoms but sometimes I'd like a clue as to what's going on in there before I'm hit with unbearable pain or other problems. I try to be proactive with juicing, bone broth and stayed hydrated. If I drink, I over hydrate with water, Gatorade and usually 1-3 stool softeners.