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Daunting

Joined
May 18, 2011
Messages
316
Feeling depressed and frustrated

Needing a place to vent, don't want to bog down my husband with all of the details.

*** I feel like I'm spiralling again*****
Argggh

In October of last year a diagnosis was finally made and the doctor figured I had microscopic colitis (MC). In November I was placed on a entocort for a short spurt for a small flare and was doing really really well the doctor decided to take me off of it and try me without it. Approximately 3weeks after ceasing the medication, pains and diarrhea started back up. This time the pains are odd. I started Entocort again last week and it has now been 7 days and I have not had any success.
While I was at work today I had to take two lomotil because I was in a training session and the urgent BM's would not stop. I felt as my body just wanted to get rid of everything in me. I know it has only been 7 days but usually by now from my previous experiences the entocort worked very well and I started to feel great. What happened this time, am I getting worse. I have an apt with the GI on Tuesday next week and I am terrified as to what he will say.
Will I have to go for another Colonoscopy I just had one in September, will he change his mind and say it is something else. Will I ever start to feel better again. I know I shouldn't be spiraling but why cant I feel better again.



AAAAAAARRRRRRGGGGGGGGGGGH:poo:
 
Sometimes our bodies start to become immune to drugs we've taken alot. Maybe your Dr. will try adding a new one. Have you had Cholestyramine for Diarrhea? It works great for many people. Dr. can prescribe it so you don't have D all the time.Let us know how you make out!
 
I'm sorry Daunting. D: I know for some people (with Crohn's) it can take weeks for Entocort to kick in. How long were you off it and what dose are you taking? From what my GI told me is that people can be given more than 9mg/day. Hopefully your GI will have a better solution if the Lomotil isn't working. I've never tried it myself but other members have mentioned Questran, don't know if it would work better or not. Have you been avoiding NSAIDs, if not it may help? I'm sure you'll start feeling better again soon. :)
 
Crabby said:
I'm sorry Daunting. D: I know for some people (with Crohn's) it can take weeks for Entocort to kick in. How long were you off it and what dose are you taking? From what my GI told me is that people can be given more than 9mg/day. Hopefully your GI will have a better solution if the Lomotil isn't working. I've never tried it myself but other members have mentioned Questran, don't know if it would work better or not. Have you been avoiding NSAIDs, if not it may help? I'm sure you'll start feeling better again soon. :)
Click to expand...

Questran and cholestyramine are the same. Mine is the generic name. It comes in a powder form you mix in a drink or you can take pills too. I use the powder and it works! Just have to pay attention to if you are getting constipated, cut back on dose or how often you use it.
 
I am sorry that you started felling sick again, the entocourt may just need more time to do its thing this time around. Its good that your going to the docotr right away, hopefully he will prescribe you something to get the ball rolling.
I hope you feel better soon, let us know what he says on Tuesday
 
Thank you all for replies

I have tried cholestyramine before a few years ago unfortunately it never helped I do still have some in the house I may try after I'm done work can't hurt

the biggest problem I am facing this time is that the feelings are completely different . last time pains we're on the right side and this time they are on the descending colon and transcending colon and jabbing pain where those two connect, and to top it off my tummy feels really jittery as soon as I wake up but no D until I either drink a lot or eat something
I think that is the reason I am so distraught this time is because the feelings are alto different from my previous experiences I do know I have diverticulitis as well but I would know for sure if I was having an attack of that I was told those pains are tremendously worse


ah well off I try to go to work

take care all
 
Daunting said:
Thank you all for replies

I have tried cholestyramine before a few years ago unfortunately it never helped I do still have some in the house I may try after I'm done work can't hurt

the biggest problem I am facing this time is that the feelings are completely different . last time pains we're on the right side and this time they are on the descending colon and transcending colon and jabbing pain where those two connect, and to top it off my tummy feels really jittery as soon as I wake up but no D until I either drink a lot or eat something
I think that is the reason I am so distraught this time is because the feelings are alto different from my previous experiences I do know I have diverticulitis as well but I would know for sure if I was having an attack of that I was told those pains are tremendously worse


ah well off I try to go to work

take care all
Click to expand...
Hope things improve for you soon Hun! I had diverticulitis in 2005 and the pain was in lower left region and it was like labor pains. So bad I had to call my husband to come and drive me to the hospital. Sounds like you need a Dr. visit! Keep us posted!:rosette1:PS Take the cholestyramine twice a day four hour AFTER meds or 1 hour before they said. If you get constipated, back off on how often you use it.
 
If you have had the cholestyramine for a while, make sure its not expired, don't want to add any more problems to whats already going on. with yourpains being completly different and located in a different spot, I am wondering if your MC has progressed to another location. Write things down now, so you don't forget when you go to yoru doctor on Tuesday (I tend to leave important stuff out on accident, thats why I am suggesting that)
I really hope you start feeling better soon:heart:
 
:poo:

I am so Fed Up

Today I left work early because I wasn't feeling good and only ate around 4 or so, about an hour or so later everything wants out and about another hour or so later more wanted out.
I am so scared right now, I think I am more scared than anything.
About 1.5 years ago, I started feeling this way and it lasted so long, no one knew what it was and nothing anyone gave me helped. I lost 30 pounds and started to only eat once a day only at night and refused to eat anything else because I would run to the loo more. On weekends I'd eat Friday night and on Saturday but back to nothing this Sunday night, I know it wasn't healthy but there was no other way. Finally I started to take 1 lomotil at night and kept that up over a few months than was able to decrease it gradually to .5 a night than .25, than things finally calmed down. During this time I went for so many tests and nothing was ever found.
What if we can't get it under control again. I know your probably saying I can try using lomotil again. But this time it feels worse. I took 2 lomotil yesterday and today I am feeling real bad again. Usually lomotil will constipate me for at least a day, but not this time. I am really getting worried. I haven't used Lomotil for a few months now, I shouldn't be building up a tolerance to it. I know its not stress, nothing has changed in my life, actually things are pretty calm and really good except for my tummy

I want to cry so much. I just want to hide in the corner ...
AAAAAAAARRRRRGGGGGGHHH
 
If your pains are and vomiting are getting worse, you might want to consider the E.R.
its possible that you have an obstruction or you are beginning to get one. I really do hope you feel better soon :(
 
Hi Everyone
I really don't know if it is an obstruction, I do not have any vomiting or nausea. The pain that remains there on a constant is a dull sharp pain, and gets worse when I need to go. The stools are soggy and very lose and it seems I go about an hour to an hour and a half after eating or after drinking a lot. I thought if I had an obstruction nothing would come out and I would feel completely bloated. I have never had one before. Can you have an obstruction from MC. I was told my MC is very mild, could maybe I have crohns instead. See there I go again spiralling.
All I know right now is I have an apt with my Gi on Tuesday and I need to get there, but whats funny I don't feel sickly just like I have to always go. Before when my MC acts up I would get some night sweats nothing this time.

One question can Entocort give diarrhea?? Or not reach the area where I am having inflammation. Maybe he will want to try Prednisone??

I'm lost.
 
I was told that night sweats was a sign of a bodies change from one state to another such as a life's big life change (menopause)
 
To be honest neither do I .
I have been on this Journey now close to 3 years and I still don't understand anything. I have read so many articles and most of them contradict one another. I have seen 4 different GI doctors and basically in the end returned to the one I have in my home town, his bed side manner isn't the best but he is suppose to be good, and he is the one that suspected the MC.
There needs to be more research on the disease, there has to be a cause and a affect.

Still aweful today, trying to get by.
 
This is so very fustrating.

Thursday and Friday has bad d and not Saturday and Sunday had no stools. Worried that my intestines will explode at work - figuratively speaking ofcourse

Do obstructions or blockages do that???
 
Daunting said:
This is so very fustrating.

Thursday and Friday has bad d and not Saturday and Sunday had no stools. Worried that my intestines will explode at work - figuratively speaking ofcourse

Do obstructions or blockages do that???
Click to expand...

I don't know enough tio answer your question. But Dustycat could help you with that. I'll refer her to you,ok?
 
Really much appreciated. !!\

I have never had a blockage or an obstruction before.

My husband thinks it may be he entocort trying to work.. Can't wait to get answers Tuesday night even though, I think he will not have any. Not being negative or anything but its been a long journey so far.
 
Hi Daunting. :hug:

Diarrhoea and abdominal pain are a common side effect of Entocort.

When did you last take Lomotil?

Have you dropped back to eating very little because of the diarrhoea?
I understand why you did this. :hug: My daughter also did that for quite some in order to lead some sort of a normal life.

An obstruction is certainly something you will not be left guessing about. It is more normal for it to affect someone with small bowel disease due to the bowels already much reduced size compared to the large bowel. As you can imagine, it doesn't take much inflammation to narrow the area even further. The main symptoms of an obstruction are vomiting and severe pain.

Perhaps the Entocort has finally kicked in and that coupled with ?Lomotil and ?reduced eating has slowed things right down.

While ever your abdomen is soft, pain is not an issue and there is no vomiting you should be right to wait until Tuesday. Just be sure and keep your fluids up and at the first sign of any change in current symptoms for the worse head to your GP or A&E.

Thinking of you. :heart:
Dusty. xxx
 
Thank you.

I did have a pill cam in April of 2012 and everything looked very good, no damage or anything was ever found. So I guess that means an obstruction and or blockage are uncommon. The pain isn't unbearable jus dull and annoying.
It has been about 10 days since I started entocort and last time I took a lomotil was on Thursday and still had D all day Friday. Yes I can say I have not eaten more usual eating patterns on the weekend, just really scared to have Diarrhea at work tomorrow. I am even considering taking a lomotil tonight, but won't since I did not go today at all.
Does entocort get to the transcendant colon and descending colon, because there is where most of my pain is??

Thank you again.
 
Entocort is designed to have the most effect in the small bowel and ascending colon. I imagine there would some flow on effect into the transverse and descending colon but I don't know how much.

Be sure and document the symptoms you have had since commencing Entocort, including your bowel habits and eating patterns, and present them to the GI when you have your consult.

Dusty. xxx
 
Thank you.

What meds do they use for the other area. I wonder if he will prescribe some prednisone.

Sucks because I felt good on entocort last time. SIGH!!
 
The only other oral med that is used to bring inflammation under control quickly is Prednisone.

I am not overly familiar with MC. What is normally used to keep things in check once inflammation is controlled?
 
Thank you again, sorry for so many questions.
Trying to understand this nightmare.

Its funny this time, I feel as if the Entocort isn't working as it should, the other times I had bad heartburn and bad leg cramps. None this time..

Maybe its going to take a bit longer to get under control.

Counting the days till I see the Doctor. Just hoping tomorrow is a good day at work.
 
You're fine hun, there's no such thing as too many questions or dumb questions either! :)

I hope tomorrow is a good day for you too. :goodluck:

Dusty. :heart:
 
So much for wishful thinking.

Woke up this morning with jittery intestines and gurglings.
After being at work for an hour or so more gurglings - almost feels like i have a touch of the stomach flu, but i know i dont have it.
Started having urgency and soft BM's (sorry) and constant sapsms, had to take a lomotil about an hour abo in order to help me get through the day.

Can't wait ot se the doctor tomorrow night, I really wish I knew what was wrong. Sometimes I feel like i'm the only one in the world with this type of feeling.
 
No hun, you aren't, just flaring. I am going thru it right now too. Ijust keep taking my cholesterymine for the runs and watch what I eat, no raw veg or fruit. Lots of water, chicken and low residue foods.:thumright:
 
I wish a low residue diet would be my cure, I hardly eat any fibre as is because I get really bad cramps from it

I didn't go into work today, still not feeling the best. Noticed today something I can tell the doctor though, the more I move the more I need to go. I woke up this morning with the gurgles and pain and forced my self to lay back down to sleep, the pain still remained for some time but the gurgles finally stopped and the pain subsided. I vedgetated most of the day fine, without and trips to the loo, than after my husband arrived home from work I started moving around a lot more preparing supper and all that jazz, intestines started gurgling again and had to use the loo, now my tummy wants to keep sending me there.
I have my Gi apt at 7pm, so I leave in 20 minutes, he takes apts late, so I have a few things to tell him, I wonder if he can help. I am trying not to get my hopes up too high, been through this several times before without any help, so I am not expecting much.

will let you guys know.
 
Daunting said:
I wish a low residue diet would be my cure, I hardly eat any fibre as is because I get really bad cramps from it

I didn't go into work today, still not feeling the best. Noticed today something I can tell the doctor though, the more I move the more I need to go. I woke up this morning with the gurgles and pain and forced my self to lay back down to sleep, the pain still remained for some time but the gurgles finally stopped and the pain subsided. I vedgetated most of the day fine, without and trips to the loo, than after my husband arrived home from work I started moving around a lot more preparing supper and all that jazz, intestines started gurgling again and had to use the loo, now my tummy wants to keep sending me there.
I have my Gi apt at 7pm, so I leave in 20 minutes, he takes apts late, so I have a few things to tell him, I wonder if he can help. I am trying not to get my hopes up too high, been through this several times before without any help, so I am not expecting much.

will let you guys know.
Click to expand...

Best wishes to you Daunting. I tried to get an appt. today but they can't see me till end of Feb. unless it gets really bad. I was in bed all day as well. Only nibbled crackers and pudding. No BM's today as I took enuff immodium to constipate a cow! Let us know what they say!:heart:
 
@723crossroads
I am so sorry to hear that you are unwell, and surprised that your GI would not see you. I would consider bed ridden to be serious...would you not. Have you tried contacting your Family doctor? or ER? They may be able to prescribe you something to help at least until your GI can see you. I know waiting is the worse even if its 1 day or several days.
I am wishing you the best. (which of them do you have)

As for me, I have seen my Gi last night he is really nice, I laughed when I saw him. I said I'm back, I wish I could say Hi to you on better terms he smiled. Funny we never see our doctors unless its for a unhealthy reason. Anywhoo. He prescribed me an 8 week course of Prednisone, He thinks the entocort was not strong enough this time around, I may be in one of my worse flares at the moment. The entocort stopped the pain on the right and the watery D but not the pain on the left or the urgencies and soft BMs. He wants to see me in 2 weeks. Told me not to throw out the Entocort as he may put me back onto it after the prednisone and Entocort is so expensive he would not want me to waste my money. I did ask him where my MC is located and see said it appeared to be every where in my large. JOY.

Does anyone know if MC is easier to treat than the other ones?? I know they are all related somehow?
And how long will it take for the Prednisone to work.?
 
Hi! I have not been on pred. but have been on Entocort. It worked well for me and I was in remission for 8 mnths or so. My Dr. didn't want to put me on Prednisone. He is pretty young and goes more for the newer drugs. Like Humira, remicade etc.....I had kidney cancer 3 yrs. ago and am afraid to go on the biologics. They did say if I got worse this week to call his nurse and they would do an emerg. appt. but I would have to drive to Pittsburgh. Much further.
Everyone on here says the Prednisone works really fast. So you should start noticing a difference soo. Let us know OK?
 
@ 723crossroads.

I do hope you are feeling better.

I'm just trying to decide, If I should eat supper or not or wait till the weekend, so I can work on Thursday and Friday. Worried that I may still have D with the prednsione.

SIGH!!!!!!
 
Daunting said:
@ 723crossroads.

I do hope you are feeling better.

I'm just trying to decide, If I should eat supper or not or wait till the weekend, so I can work on Thursday and Friday. Worried that I may still have D with the prednsione.

SIGH!!!!!!
Click to expand...

Can you take immodium and just eat a small amount and see how it works?:thumright:
 
I had a small meal of chicken and rice and about 30 mins had some pretty nasty pains and a solid BM more like a constipated looking one
I don't know what is going on and I'm getting worried, I've taken prednisone before but not fir this long but usually my first day is nothing like this. it feels like i have a huge irritation in my left sided colon when food or gas passes through and my body just wants to push it all out

can microscopic colitis be this painful and uncontrolled

:frown::frown::ack:
 
Daunting said:
I had a small meal of chicken and rice and about 30 mins had some pretty nasty pains and a solid BM more like a constipated looking one
I don't know what is going on and I'm getting worried, I've taken prednisone before but not fir this long but usually my first day is nothing like this. it feels like i have a huge irritation in my left sided colon when food or gas passes through and my body just wants to push it all out

can microscopic colitis be this painful and uncontrolled

:frown::frown::ack:
Click to expand...

I don't know. Maybe checkout the thread about microscopic crohns on the main forum page. They would be able to answer that. I',m sorry I can't answer that. I will go check and see if I can find out."Lymphocytic colitis and microscopic colitis club". Just hit search at top of page and type it in. It will take you there, ok? Blessings to you!!!:heart:
 
@723crossroads.

Thank you for the information, I have read a few posts and not many mention pain, but everyone is different.
I have thought about and will be considering trying a Gluten free diet, but first ofcourse I will speak to my Gi on 12/02/2013 to see his opinion on it.

-Today is my second day on Prednisone 40mgs, I still have some pain but no Diarrhea, I did have a somewhat of a normal bowel movement. Hoping things will improve over time.

This is so confusing for the past few years I had thought I had crohns and I did so much research on it and now I am faced with something that is new to me and this is first major flare and honestly don't know what to expect, I am just happy that i have Gastro doctor that i can talk to even though I know he is so rushed because of his work load, but if you actually tell him you need to talk he will listen. Learned that. lol

Anyway, heres hoping the pain calms down some, I haven't eat much as of lately because I am still afraid of the pain and the diarrhea but I am taking it day by day.

I hope everyone is doing better than I am . :rosette1:
 
Hi again! Hoping you continue to improve and it sounds like you really are. I bet tmoro will be even better! My pain was bad this morning. I discovered if I take a half of a muscle relaxer it seems to help calm down the spasms and pain.I can't take hyocystine because it gives me vertigo and nausea really bad. I had to clean for my sister today. She pays me and it was very difficult because I am so tired and hurting. But just kept pushing myself and got it done.[ We need the money or I would quit all together.] I used to do 3-4 houses a week! Big ones. No more.
My sister had ulcers on her ankles for like 13 yrs. and had to walk with her feet elevated from the arch back or it hurt too much. She went thru every possible type skin graft you can imagine and treatment. We all just kept praying and they finally healed shut. But her feet are crippled from walking that way all these yrs. They buckle out sideways and she even broke a bone once from walking that way. She is having surgery in May to fix her feet. They have to take the bones out and reshape them and put them back in. Her legs and feet are too skinny for pins. The surgeon has never done this before and we are praying it works and she will be able to walk normal again. She has had to wear huge block heels all this time so she didn't fall over. She is the sweetest girl. I pray God gives her back her feet the way they were. I can't complain too much when I see what she has endured. The pain was excruciating. Oh my, life can be so hard and we just have to have faith that we will be better someday!!!:heart:/COLOR]
 
Improving I do not see how, to be honest the only thing that has stopped is the D so far.
This morning I woke up with gurglings again, and I sware if I wasnt on prednisone I would of had several bathroom trips. My tumy is still sore and bloated. I am honestly not sure what is going on with my system.

I know I am asking for alot, but I just want to feel better, It has only been 3 days including today that I have been on Prednisone but 2 weeks prior on Entocort 9mg. Something has to give soon. I do start my menustration cycle this weekend, so that will be fun. Hopefully things will calm down after that.

@723crossroads.

I am so sorry to hear about your sister, I wish her the very best with her operation, and wishing you feel better soon. I know the feeling.

When I was first told it was Microscopic colitis I was happy it wasnt crohns but now I'm not too sure. Could they of made a mistake.
 
Daunting said:
Improving I do not see how, to be honest the only thing that has stopped is the D so far.
This morning I woke up with gurglings again, and I sware if I wasnt on prednisone I would of had several bathroom trips. My tumy is still sore and bloated. I am honestly not sure what is going on with my system.

I know I am asking for alot, but I just want to feel better, It has only been 3 days including today that I have been on Prednisone but 2 weeks prior on Entocort 9mg. Something has to give soon. I do start my menustration cycle this weekend, so that will be fun. Hopefully things will calm down after that.

@723crossroads.

I am so sorry to hear about your sister, I wish her the very best with her operation, and wishing you feel better soon. I know the feeling.

When I was first told it was Microscopic colitis I was happy it wasnt crohns but now I'm not too sure. Could they of made a mistake.
Click to expand...
My Mom and my sister both had ulcerative colitis and my one sister had to have her colon removed because it was so diseased and could've led to cancer. But they both suffered alot of pain and D and bleeding and this went on for yrs. My mom is in remission and on some kind of meds for it. My sister still has IBS without a colon. So just colitis can cause a reat deal of pain. Maybe you need antibiotics. Sounds like an infection.
 
I too think that I may have an infection and was thinking of bringing that up at my next apt. I'm under the impression that I am having a diverticulitis infection.

Buy who knows.


I am so sorry about your mom and sister, my brother in law also had sever UC and had to have his colon removed, he now has a J-pouch and last I've heard he is doing very well. I will always envy his tenacity to keep on going . I wish sometimes I was strong like him.
 
Daunting said:
I too think that I may have an infection and was thinking of bringing that up at my next apt. I'm under the impression that I am having a diverticulitis infection.

Buy who knows.


I am so sorry about your mom and sister, my brother in law also had sever UC and had to have his colon removed, he now has a J-pouch and last I've heard he is doing very well. I will always envy his tenacity to keep on going . I wish sometimes I was strong like him.
Click to expand...

I get my strength thru my higher power which is God. I have been thru so much it would make you shudder. But I am stronger having gone thru it all.:heart:
 
@723crossroads.

I some times wonder what is the difference between strength and just giving it up and letting it be.

But yes I do sometimes think, god would not give me anything that he thinks I cannot handle. But again I never wanted this, and none should go through this..

Please let tomorrow be a better day.
 
Daunting said:
@723crossroads.

I some times wonder what is the difference between strength and just giving it up and letting it be.

But yes I do sometimes think, god would not give me anything that he thinks I cannot handle. But again I never wanted this, and none should go through this..

Please let tomorrow be a better day.
Click to expand...

I claim it for you!!! Tmoro will rock!!!
Letting go and letting God is strength! When I am weak, then I am strong!;)
 

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