Not feeling very well

[hoosier1]

All:

Bummed out today in a major way.

Need your advice regarding my next course of action. I am 2 months and almost 2 weeks on 9mg of Entocort. I seemed to be doing better about a month into the program. Lately however, and even following the restricted diet, I am having more BM's and feel shocky.

My bowel movements are also very thin, which I would assume indicates inflammation in my descending colon and lower.

So I am wondering if my condition needs to be treated "lower", so to speak, like with an Entocort Enemas or the like.

I am attempting to make an appointment at Indiana University School of Medicine to really hone in on an effective treatment plan. As I list my symptoms, I really think I more closely resemble UC as opposed to LC, except for the lack of blood.

So here are my symptoms again:

1) Multiple BM's in the morning. Not really loose. They get thinner and thinner in caliber as my morning saga continues. I also feel like I am constipated or blocked. Weird.
2) An almost constant lower left quadrant pain. Worse in the morning. The location is about 3 inches to the left of my belly button and a couple inches down, i.e. right over my colon. It is a dragging kind of pain and discomfort.
3) Losing weight.
4) Feel toxic and clammy.
5) Slurring my speech at times. Incoherent.
6) Have a little vertigo.
7) Night sweats
8) Have to urinate more when my GI is most active.
9) Impatient (say others). But I do sense this too.

I have been very religious to the diet too.

Not sure what to do (except to eat a bowl of ice cream). Just feels like my life is slowly slipping away. My grandfather had UC and had pretty much all of my symptoms, but he progressed to severe bleeding as well.

So I wonder if my LC is really a less advanced (yet advancing) stage of UC. To me, MC just seems to be a phase across the continuum of IBD. And if that is the case, I need to get a doctor to recognize this and treat me accordingly. Because I am pretty sure there would be more focus on my bottom, pun intended. I have been mismanaged for quite a long time.

I also wonder how I would respond to Prednisone. I know it is more systemic than Entocort, but perhaps that is what I most need right now. You know, hit me hard, allow me to feel normal for even a short while.

So as you can probably tell, I do feel a little (maybe a lot) hopeless right now. This problem, as you all know, is literally draining the life out of me.

Look forward to your ideas and support. Sorry about the whining.

Rich

[natythingycolbery]

Sending you hugs from the UK

I'm sure I read somewhere that they think MC and UC can be related/progress from one to the other but I'm not really sure about that. Tex and co (I know you all have names, but the brain fog is confusing me! and I forgot them and I am sorry) are likley to know more than me.

Apart from that there isn't really much I can say apart from you really are doing the right thing about going to get help when you need it.

Hope you get the help you deserve.

xxx

[hoosier1]

Thanks Naty,

Appreciate the support. I guess regardless of the data (or lack thereof), I think MC and UC are very much related. When my grandfather was first diagnosed, they had no name (initially) for what he had. Today, I wonder what his first diagnosis would have actually been.

Brain fog... me too... seems to be getting worse... Leaky gut? Who knows.

Confused, disappointed, and tired right now. As, the saying goes, I wouldn't wish this animal on my worst enemy.

Rich

P.S. On a lighter note, at least my pup is feeling better (less his toe). Amazing how resilient animals are.

[natythingycolbery]

Rich,

Glad your dog is feeling better

Brain fog is really annoying, thing is for me it can be one of three (or four) things that is causing it, anxiety, depression, insomnia or MC and they all appear to have made an appearence kinda in the last few days, maybe they are all linked?

Anyway that was a tangent....

Completley with you on the confused and dissapointed front right now!

Naty
x

[ant]

Dear Rich

I looked back at my "winning the poo" tables and saw it was five and a half months into Diet and the 9 mg Entocort that a change for the better really happened. For most of that time my MBs were 50% soft/loose or D. Initially I also had a pain in the descending colon and visually could tell it was bloated. But that went away quicker for me.

I have for many years had night sweats and still do
I have slight vertigo and sometime a short fuse as far as patients goes
I do not (I think) have brain fog, but I do have fatigue

Don't no if this is useful, I sure hope you pull out of the dive soon

Dear Naty

Hope things start getting better for you too.

All best, Ant

[tex]

1) Multiple BM's in the morning. Not really loose. They get thinner and thinner in caliber as my morning saga continues. I also feel like I am constipated or blocked. Weird.

That's common for MC, and for acute diverticulitis.

2) An almost constant lower left quadrant pain. Worse in the morning. The location is about 3 inches to the left of my belly button and a couple inches down, i.e. right over my colon.

That's the location of your Sigmoid colon. Does your endoscopy report mention any diverticuli, (most GI docs refer to them as "tics" in their reports. Your description of your clinical symptoms sounds more like acute diverticulitis, than UC, (speaking from experience).

4) Feel toxic and clammy.
5) Slurring my speech at times. Incoherent.
6) Have a little vertigo.

That sounds like neurological symptoms, possibly due to an adverse reaction to budesonide.

You can't diagnose an IBD by clinical symptoms - IBDs have to be diagnosed by laboratory findings.

[Gloria]

Rich,

Entocort worked fairly quickly for me the first two years I took it, but this year has been much different. I experienced many of the same symptoms you do. It took from March until June before I finally saw a more solid BM on the full dosage of Entocort, and that was only because I eliminated two more foods (chocolate and tomatoes) from my diet. That euphoria lasted a short time until I began having loose BMs once again and I had to determine which other foods could be a problem. I eliminated tapioca, buckwheat, and millet and have been doing great since. I never want to consider that I still have foods to eliminate, but that always seems to be the case for me.

I still get night sweats occasionally, but they may be post-menoposal symptoms.

I have tenderness and pain in my lower left quadrant. I have diverticulosis and have had diverticulitis. But I'm sure that I also have a hernia because it is very tender much of the time and bulges out a bit. I wear a hernia harness when the pain is especially tender in the morning. A doctor should be able to tell you if you have either a hernia or diverticulosis. Diverticulitis is usually accompanied by a fever.

I know you are discouraged. Watching your weight spiral downward is scary. I've mentioned before what I do to keep from losing more weight, but I'm talking about maintaining a minimum of 92 lbs. You need to eat much more than I do. Carbohydrates are a good way to increase weight. Potatoes are great for weight gain. Meat is also good. I eat muffins and pudding for extra calories, but I cut the amount of sugar in half, because I don't want to encourage leaky gut. I also limit how many I eat in a day.

I hope you find some answers soon.

Gloria

[Ginny]

Rich, all I can do is give you words of encouragement. I have been down this path for awhile and have experienced good days and bad days; mostly bad days in the beginning and being totally consumed by this disease. In the end, we have no other choice but to keep fighting and trying to figure out what is causing us to continue to have problems. We are just lucky to have a great forum where we can express our motions, bond with others and learn from each other. Hang in there; we are with you! Ginny

[MaggieRedwings]

Rich,

Not much I can add to what has been said other than to say that a lot of your symptoms are what I had on Entocort. For you I think there is more sorting out to be done. Please keep your chin up and you are in my prayers. Feel so bad that you are going through this.

Love, Maggie

[Tanya Lynn]

Rich,

I have been on Entorcort 9mgs since July, and reduced to 6mgs in mid-Oct., then reduced again to just one pill a day. I still have really bad mornings, up to 4-5 times before 10am... I just increased the Entorcort back up to 6mgs just yesterday. I wish so badly that I could give you some good news, but it is so very depressing when you think you are getting better then along comes the D...

From everyone here that I have read about, especially the veterans, I can only hope that one day that we all will advance to remission. I know that it's taken years for a lot of people to reach that milestone, so I try to stay as positive as possible.

I do have diverticulosis as well. I had a serious attack about 2 weeks ago. I
ate about 4-5 almonds, (suppose to avoids all nuts, seeds, corn, popcorn,etc.)
and thought about when I ate them, that I shouldn't be eating them. Well,
the next morning I thought I was going to die. Severe pain, in my lower
colon and really really bad pain up in my bottom area. It was as bad as labor pains!! I will absolutely avoid nuts forever. The swelling and tenderness lasted for several days after. I just said this, because I don't know if your eating nuts or not, but maybe just watch out for them.

As far as brain fog, it seems like it's getting worse... I am so forgetful lately
it's really freaking me out... The other day, my husband asked for a voided check, I went and got the checkbook from my purse and wrote in the register, the date and VOID and the check #, then I put it back in my purse and went on about my business. He asked where I put the check and I realized that I didn't even tear it out from the checkbook. I'm doing really stupid stuff like that and a lot more of it.

I would love to know about your visit to your new doctor, if only we all had Dr's who understand this dreadful disease we have. Good luck with your new Dr.

[Gloria]

I do have diverticulosis as well. I had a serious attack about 2 weeks ago. I ate about 4-5 almonds, (suppose to avoids all nuts, seeds, corn, popcorn,etc.) and thought about when I ate them, that I shouldn't be eating them. Well, the next morning I thought I was going to die. Severe pain, in my lower colon and really really bad pain up in my bottom area. It was as bad as labor pains!! I will absolutely avoid nuts forever. The swelling and tenderness lasted for several days after. I just said this, because I don't know if your eating nuts or not, but maybe just watch out for them.

I'm so sorry that you had a severe diverticulitis attack. I tried telling my GI that I ate something similar which brought on an attack. He told me that someone with diverticulosis doesn't need to worry about what they eat. He said that what I experienced shortly after eating the "forbidden" food could not have caused an infection by the next day, and diverticulitis occurs when a pocket becomes infected. He said that the majority of people over age 50 have diverticulosis, and the majority of them eat nuts, seeds, popcorn, etc. and never get diverticulitis. Someone else I know had surgery to resection his colon because he had severe diverticulitis attacks. His GI told him that he's never had an "aha!" moment after surgery where he's found the pocket containing the offending food.

I've been avoiding nuts, seeds, popcorn, etc. because I have MC, but if/when I'm ever in remission, I won't avoid them because I have diverticulosis. There are mixed opinions about the theory of what causes it, but we each have to do what we think is best.

Gloria

[mbeezie]

Rich,

Sorry to hear your symptoms are still not under control. Are you just avoiding gluten at this point? Have you considered avoiding other things like dairy and soy? You may be reacting to the medicine but you may also have other sensitivities.

I have had vertigo, night sweats, clamminess, anxiety, increased urination and shocky feeling (and I actually had shock (anaphylaxis), not just a shocky feeling) and for me it was definitely related to food and overactive mast cells (I never took Entocort). Next time you go in for a colonoscopy you should request a mast cell stain. If they are searching for answers they should check that out too - a few of us here have mast cell issues and you are definitely describing some of the symptoms. Other symptoms could include itchiness, neuropathy, tachycardia, migraine, chest pain, fatugue, hives, flushing . . . .everyone's symptoms are different. A gastroenterology mast cell specialist I consulted via phone with before I had any tests done told me to try taking benedryl (or zyrtec or claritin) to see if it helped with some of the symptoms - it's not a diagnotic test by any means, but if it helps with the shocky feeling, urination vertigo etc it may point you in that direction. It won't help your stools though.

Hope you are feeling better soon. Your symptoms are very unpleasant and I remember being in your shoes.

Mary Beth

[hoosier1]

Mary Beth, I am avoiding gluten, dairy, and soy. I have been very vigilant on this front.

What exactly does the Mast Cell stain indicate?

I will give the Benadryl a try.

Tanya, I am sorry to hear you are still suffering. We sound similar. I also have the forgetfulness. It could be my age, but I can tell something is off. I am finding ways to compensate, but when I lose my train of thought mid-sentence, then I know something is wrong. I see my family doc Tuesday for a full physical and the results of my bloodwork and IgA. I will let you all know of the results.

Maggie, Am I to understand that Entocort created more problems for you than it solved?

Ginny, thanks for the words of encouragement.

Gloria, I will try to eat more. And have been trying. Eating for me can be, at times, inconvenient. But I do feel I am doing better in this category.

Thanks everyone for the support.

Rich

[mbeezie]

Rich,

It's called a tryptase stain and can show if there are increased number of mast cells. You could also have a normal level of mast cells but they behave badly.

I was off gluten, dairy and soy and was still sick. It wasn't until I got off of tapioca (which is in most GF products), peanuts/all legumes, lettuce, almonds and a few other things that I started to get better. I understand completely how frustrating it is to be on such a restricted diet and still be symptomatic. What works best for me is a (nearly) paleo diet.

Do you suppose you are getting dehydrated from all the D. That could also make you feel worse.

Glad to hear your dog is on the mend.

Take care,

Mary Beth

[Ginny]

Rich, I believe I have a Mast cell issue as well and I have been taking Zyrtec gel (no lactose) not the tablets for about 3 months now and I believe it has helped. I would jump on the Paleo diet except I cannot eat many fruits or veggies and am finding out that I need to really reduce my fiber to practically nothing, which leads me to rice & meat. I'm beginning to get a little frustrated with the upcoming holidays and my choices of what I can eat! Oh well, I rather have Normans than D any day Ginny

PS I really understand the weight issue. I tell my DH all the time if I turn sideways, nobody will see me