I made an appointment to have my digestive system removed

[IDreamInColor]

....and I believe if that really were an option I would do it at about this point. I have come to hate food, it does nothing but cause me grief. I am still flairing and still haven't ate anything since that tiny amount on Christmas.

I have a couple questions:
Is getting a colon bag an option for someone with this horrid disease?

What has your doctor done to help you with this disease?

My regular doctor, not the GI doctor mentioned that surgery might be an option but she said that's really a last ditch option and would prefer never to do that. What kind of surgery is she talking about, how can surgery help?

[Joefnh]

Hi IDream. I can fully understand your frustration. Although a possible solution, surgery is a very dramatic option. I know you have been having a tough time with this disease and my heart goes out to you. At the moment I do not recall if you have tried any of the immune system modulators. Like you I could not get my MC to calm down with diet alone and the Entocort barley managed the symptoms.

What has been a miracle for me is Imuran, which is a immune system suppressant and has given me my life back. While it is one of the 'big gun' medications it has almost completely resolved my MC and Crohns symptoms. To maintain this remission, I take the Imuran daily, stay true to the diet and use acupuncture twice a week. If you have not tried any meds like Imuran or even one of the TNF drugs like Humira I would discuss these with your GI doctor. I know in various medical texts Imuran is mentioned as one of the medications to try in bad cases of MC like you are experiencing and it is also used quite frequently to treat Crohns disease which is another IBD.

I'm sure others will post here regarding this issue. I would also PM Polly, I believe she might have some important information regarding surgery and MC.

Take care IDream, I know this is a frustrating time.

--Joe

[IDreamInColor]

What exactly is an immune supressant? Do drugs like that cause your immune system to be on the downlow? Does it cause you to pick up viruses and infections easy?

[Joefnh]

IDream an immune suppressant is used for various autoimmune diseases like arthritis, Lupus and IBDs like MC or Crohns. The goal with these meds is to in a controlled way reduce the response of the immune system so that your body will stop attacking itself. In autoimmune diseases your immune system is actually mistakenly attacking itself causing the disease symptoms. These meds do suppress the immune response as a whole and can lead to getting more colds etc..

To reduce this risk I have my blood tested every 8 weeks to monitor my white blood cell counts to insure that the immune system is not too suppressed. So far I have had no colds or infections. I have also spoke to another individual where I work who has Crohns, and has been taking Imuran for the last 6 years and has not had issues with infections or colds.

These medications are potent meds and can have side effects that need to be fully understood before you take them. At least for me it has been nothing short of a miracle. I have not felt this good for at least 10 years. The reason I make that statement is that i have had many other autoimmune symptoms for 10 years prior to be diagnosed with MC and Crohns this past April.

I hope you find a course of treatment that works for you IDream. I thinks Gabes statement "There is no right or wrong way, there is your way" really sums it up. We each have to find the path to health that works for us. I do hope that your path can avoid surgery, that just seems like a very dramatic option.

Take Care

--Joe

[tex]

IDream,

For every "happy" user of immune system suppressants, there are others who are not so fortunate, and who suffer from infections and other side effects, (not the least of which is the risk of a damaged liver). Some of the immune system suppressants even increase the risk of issues such as cancer, for certain individuals. They can seem like miracle-workers when they work right, and they can be someone's worst nightmare when things go wrong.

An immune system suppressant will shift your immune system out of gear, and into neutral. Yes, immune system suppressants make users very vulnerable to infections of various types, including both bacterial and viral.

The surgery you are referring to involves bypassing the colon by means of an ileostomy, (I have an ileostomy myself, because my colon was removed in an emergency procedure, back in early February of this year). The problem with an ileostomy is that the output into the pouch is always diarrhea, (since water is not removed in any significant amount, until the fecal stream passes through the colon), so the ileostomy appliance has to be "serviced" much more often than a colostomy pouch, for example, and the risk of a leak is much greater, because of the liquid status, so you have to be extremely careful when "prepping" the site, prior to attaching the body seal appliance.

We have one member who recently had that procedure done, hoping that it would resolve her MC symptoms, because she was frustrated by the lack of improvement, (following her doctors' recommended treatment - not ours, on this board), and her doctors told her that it would resolve her problems.

We advised her not to have the procedure done, because in our opinion, it would not stop her symptoms, (since she was already using an enteral feeding tube, and it did not resolve her symptoms). She trusted her doctors, and went through with it anyway. Not only did it not help at all, but now she has chronic pain and nausea that she did not have before the procedure. Now, she wants to have the procedure reversed, but I'm concerned that doing so may not reverse the pain and nausea. Anyway, the point is, surgery is usually a poor option for MC. There's nothing magical about it. If you decide to have the procedure done, be sure that they do not perform a colectomy, (removal of the colon), because you will almost certainly want to reverse the procedure after you try an ileostomy for a while, and if your colon is removed during the original procedure, then obviously it cannot be reconnected.

I noticed in your response to another thread, that you mentioned that you have Graves disease. I didn't know that. Are you aware that hyperthyroidism causes diarrhea? Part of your GI problems may be due to untreated or undertreated hyperthyroidism. If I were in your shoes, I would pursue that line of treatment before considering any surgical options.

Tex

[harma]

Hi Dream in Color, I am really sorry to hear you are still doing so bad. But I just wonder, what have you done so far to get the disease under control. You aren't eating anything at the moment, but when you eat is it gluten, soy and dairy free? Diet is for a lot of us an important tool to get the disease under control. Although this is not a quick fix, it takes months and sometimes even up to one or two years to achieve remission.

What also works for a lot of people here is medication. Entocort is the most effective medicine for MC and works well for most of the people. Although some have to stop due to side effect, but this is minority (and sometimes lowering the dosage helps to get rid of side effects).

Before having your bowel removed, if I were you, I would first give the diet and medication a serious try. Especially entocort, talk to your doctor and ask him to prescribe you this medicine. It really can be a miracle drugs for this disease.

Good luck with it

harma

ps I am controlling my CC with a strict diet (gluten, soy, egg, dairy, yeast and corn free) and medication, entocort.

[IDreamInColor]

Tex, yep I'm aware of the d factor that goes along with graves disease. The only treatment options for graves disease is either radioactive iodine, drugs such as tapizole, and surgery to remove the thryoid. I opted for the drug therapy, I take the generic form of tapizole called methimizole, I've been on it for 5 years. I have my levels checked periodically to make sure I'm in the normal range, I have even purposely brought my levels up to the higher end of normal to try to slow the d down, but it doesn't work because of the mc.

[Joefnh]

Tex those are wise words of caution when it comes to working with the immune system. Overall you cannot be too careful.

To be fair though lets look at the real world patient studies that have been done on Imuran over the last roughly 40 years of usage:

In patients receiving a dose of 5mg/kg (This is twice the dosage taken for Crohns or MC):

- Infections of any type showed an increase rate of 0.8%

- Liver toxicity showed an increase rate of 1.2%

- Increase in cancers of any type show an increase of about 1 for every 1000 patient years


As far as shifting the immune system into neutral that may be a bit of an overstatement. A better way to put it might be to say it takes the immune system out of high gear.

The normal range of white blood cell counts is 3,800 - 10,000. The target range of white blood cell counts while on Imuran is 4,000 - 5,000. While this is a reduced count rate, the goal is to still keep it within the normal range and not put it into neutral.

Keep in mind one of the advantages of Imuran is that if you do have an infection the dosage can be reduced or stopped for a short period of time with little impact on the underlying disease.

Overall I agree that with any of these medications you need to be fully informed and work closely with your doctor to insure that they are administered and monitored safely.

--Joe

[Kari]

Hi Idream,

So sorry to hear you're having a rough time again - I know the feeling of hopelessness only tooooo well. Anyhow, it seems to me that you were reporting doing very well not too long ago? If I'm correct, then I would try to trace back what I was eating during that period? I know it's very difficult to remember such details, which is where keeping a daily food log is so incredibly helpful. Can't remember if you are keeping one, but if you do, it could certainly prove very helpful right now.

Regarding Graves, I had it about 25 years ago and opted for the radioiodine treatment. I stayed within normal range for a while, but then flipped to hypothyroid, and have been on synthroid ever since. I had the protruding eyes, which was extremely uncomfortable, but it went away with the treatment. Do you also have that symptom?

Best of luck to you in conquering your latest flare - keeping my fingers crossed that you'll feel better real soon.

Love,
Kari

[tex]

Joe,

As we all know, statistics are so vulnerable to manipulation, that without all sorts of restrictions to limit "creative" statistical results, it can be difficult to judge the value of their "pedigree". Also, one reason why those infection rates are kept low, is because anyone taking immune system suppressants is advised by their doctors to be very careful to go to extraordinary measures to prevent infection. Without those precautions, the infection rate would be much higher.

Actually, I suspect that white cell count is probably of rather limited value in determining vulnerability to infection. Monitoring the absolute neutrophil count, as is used for monitoring the risk status of chemotheraphy patients, for example, appears to be a much better way to monitor the risk of infection.

The absolute neutrophil count, (ANC), can be found by multiplying the total white cell count by the percent neurtrophils. As long as the ANC remains above 1500, everything is hunky-dory. If the ANC drops below 500, though, then the infection risk is HIGH - no ifs, ands, or buts. Of course, just because the risk is high, doesn't mean that it will happen - some people are just lucky. Some of us are not.

http://www.chemocare.com/managing/low_blood_counts.asp

I understand your position, and why you are making those recommendations, and I certainly respect your position, and defend your right to offer your views on various issues, in any way you choose. Obviously, we tend to recommend what works for us individually, since that is what we are most familiar with, and indeed, that is the one unique feature that makes this board so useful to so many. It allows us all to see firsthand, how others' approaches have worked, (or not worked), for treating their symptoms in real-life situations, so that we can learn from everyone's experience, and decide for ourselves, based on our own situation, what might work best for us, and/or how we might best go about selecting a treatment option for ourselves. I do the same thing myself, (offer advice based on personal experience), and so does everyone else here, and that's what makes this board work.

Please allow me to plead my case, though: We have to remember what disease we are trying to treat, when offering our advice, because we have members here with all sorts of digestive system issues, some of which may require specialized treatment that doesn't apply to the others. While it is true that immune system suppressants have been shown to be very beneficial for many Crohn's sufferers, they have not been found to be very effective by the members of this board, who have tried them for controlling the symptoms of MC. In fact, at last count, they appear to be a dismal failure, for all practical purposes. That means that you have a very different way of looking at your treatment program, than most of us here. Up until your doctor advised you that your Crohn's seemed to be progressing, (presumably due to the jejunum involvement), you viewed your issues and treatment pretty much the same way as the rest of us. From that point on, though, you shifted out of MC treatment mode, and into Crohn's treatment mode. Right? Since your treatment is showing good results for you, you're naturally enthusiastic about it, and I certainly agree with you that it appears to be just what you need at this particular point in time.

However, promoting the use of immune system suppressants for someone with MC, (and not Crohn's), would seem to be a counterproductive effort, based on the accumulated history of member experiences, (for members with MC only), here on the board. Sure, if someone wants to try them, that's between them and their doctors, but our overall experience with such drugs has not been very encouraging, as far as the members of this board who have MC, (only), are concerned.

IMO, (and this is just my opinion, so I certainly understand if I am in the minority), "Big Gun" drug treatments for MC, fall into the category of "last-resort" options, along with surgical intervention. Surgical intervention for Crohn's is a common, effective, and well-accepted treatment. For MC, though, it is similar to burning down the barn, to get rid of the rats. If it works at all, there is always the question of whether or not it was worth it, and the big problem, of course, is that it doesn't always work, as has been demonstrated by at least one very disappointed member, here. Immune system suppression seems to be very similar - it works fine for Crohn's patients, but very poorly for MC patients. True, there are no drugs labeled for MC, so we have to borrow from drugs labeled for Crohn's disease, if we want to use a drug, but that doesn't imply that all drugs labeled for use with Crohn's disease are appropriate for MC, any more than it implies that some of the surgical treatments used for Crohn's disease are appropriate for MC. Of course, in all fairness, it doesn't imply that they are not appropriate for MC, either.

Unfortunately, as you are well aware, Crohn's disease trumps MC, so if one has both, one treats Crohn's disease, and hopes that the MC is cooperative, and I have a hunch that it will cooperate, because remember, Crohn's disease is by far the major actor, as far as your immune system is concerned, so your immune system is going to concentrate on Crohn's disease, as long as Crohn's is present. IOW, your immune system is going to ignore MC, for all practical purposes, so I don't see any reason why you would ever need to shift your treatment focus from Crohn's to MC. That's just my opinion, though, with all the usual caveats, such as "I'm not a doctor", etc., etc.

The bottom line is, for anyone with Crohn's disease, I certainly fully support "Big Gun" drug treatments, and surgical intervention, when indicated, because those treatment options have been shown to be very effective in dealing with such issues, and I'm very thankful that Imuran is working so well for you. With MC, however, I'm not convinced that promoting such treatment options is a good idea, as a general rule. For certain individual cases, of course, we should always be willing to consider the merits of unique situations, if conditions warrant, because as we know, there are always exceptions to every rule.

Anyway, now you see why I tend to be sort of a "party pooper", when it comes to the "Big Gun" treatments - they simply haven't been effective for treating MC, based on our accumulated experience, and since they do raise the bar for the risk of complications, they don't score very well, overall, for treating MC, (IMO). YMMV, of course, since you're currently treating Crohn's disease, rather than MC.

Tex

[Joefnh]

Tex I agree for the most part in most MC cases, you will note that I always recommend diet as the first line treatment for MC. Lets remember if you have someone looking at having their colon surgically disconnected... I would certainly consider a medication long before ANY surgery. That's the only reason I brought that up.

The monographs I took that information from are from Prometheus Labs and Smith Kline & Glaxo. These monographs are kept quite accurate as they are continually monitored and peer reviewed and are based on a lengthy track record

I am treating both Crohns and MC and as far as treatments go its pretty straightforward, diet and meds.

I realize you have your opinions Tex, but I thought this was an area we could all share what has worked or not. Obviously in this case the doctor has the last say in what he or she may offer. My goal here is to offer my real life story which has worked in the case of MC admittedly alongside Crohns.

As part of my thoughts, my MC was located in 4 segments of the colon with an average collagen layer thickness of about 63um. At least according to my GI that was the primary reason for the watery D. It would stand to reason that in this case the Imuran has controlled the MC fairly well.

Now in my case would I have chosen Imuran over another treatment had I not had Crohns? That's a good question. I know I was in a state that I could not stop the Entocort without the D returning. Certainly if I was at a point that nothing else was working, and I felt that I had exercised both the dietary control and the available first line meds without success, I would at that point consider Imuran or a similar med. Certainly though it not be my first choice.

Tex in highly refractory cases of MC (not responding to diet, or standard meds) what would you recommend?

I would rather that IDream has this information (both good and bad) when she talks with her doctor.


--Joe

[natythingycolbery]

I've always been told that removal should only every be a last resort (i asked when I was first diagnosed if I should just get it removed to save time) and they said that it's more cost effective and less painful to treat your symptoms before any colon is removed than after, especially seen as it isn't that successful a treatment.

Idream, I get the impression that you are jumping to desprate measures due to a few bad weeks or motnhs (Correct me if I am wrong) But from reading what you have said, even your dr thinks that this isn't a wise path to take, I think you still have other options to take before this.

[tex]

Joe,

Your opinion certainly didn't offend me in the least, but it's pretty clear that my post did offend you, and that is definitely the last thing I would want to do. I hesitated for a long time, writing and rewriting my response, in a way that I hoped would not be offensive, however, I notice that you had already responded 9 minutes before I even finished editing my post, so you might re-read my post and find that many parts of it are reworded from what you probably read. Hopefully, it won't seem as offensive as your initial impression, because I was trying to be constructive, not critical or offensive.

I apologize for not being sufficiently eloquent to get the point across without offending you. Communication is not my forte. Unfortunately, I have a bad habit of writing what pops into my mind, rather than what most people would write. I realize that it's a bad habit, but I find it virtually impossible to overcome. Sorry.

Tex

[natythingycolbery]

Also, Idream, have you been back to your GI recently? from a lot of your posts recently it is obvious that you are struggling with this disease, maybe going back to them would help you more than this? Compared to other members of this board (not including me as I was only diagnosed a motnh before you), you are still new to this and seem to be struggling to appreciate that it can take a while to get under control.

[klhale]

Hi,

10 years ago, I was as sick as you are now. I got on Prednisone, and stayed on it for about 8 months to a year....I then transitioned to Entocort, where I was on it for 4 years ( one pill a day). I then went into remission for 4 years.(no meds)
Please do not remove your GI system. You can conquer this disease but you have to start with a food diary and eliminate the foods that are making you so sick. You can figure it out...you have to start with a whole new diet, perhaps eating things you have never tried before.
Trust me, you can bring this under control. It takes a lot of stamina, which I know you have!

Think about it.....
Karen