Annsplash

[Trysha]

annsplash

Hello,
I am a senior and recently diagnosed with crohn's after an investigative colonoscopy, at which time a premalignant polyp was removed and presence of crohn's noted.
I had symptoms of abdominal pain, left side and blood in stools, frequent bathroom visits , 3-5 daily and fatigue.
my doctor has prescribed colifoam to use for one month.
my next appointment with him is 5 weeks time,and i am about to finish the one month colifoam course.
Do I just stop the colifoam enemas prior to seeing him, or am I supposed to taper the doses.
The current dose is once daily at night.
Although the bleeding has stopped and the occasional urgency,gas and frequent bowel movements,down to once or twice a day now---I still have a dull ache, fairly constant in the daytime and worse at night in the lower left side.Also at night I have indigestion at times but also aching in my right side and stomach.
I am unhappy to be on any steroid preparation and do not like being tied to daily colifoam retention enema
I would like to hear from other Crohn's sufferers what their experience is with colifoam.
I have tried to reach my doctor at the hospital but was informed the department is on annual holiday.
I need a decision now and failing that will stop the colifoam, since it runs out at the end of the 4 week course.
It would be helpful to hear about similar situations.
I feel very depressed at the diagnosis and treatment.
Any help would be mst welcome

 

[imisspopcorn]

Hello,
I have never been on the Colifoam enemas. Hopefully will you get some answers. It takes time to get over the diagnosis and I hope you start to have more improvement in your symptoms. You may want to search some of the old treatment threads for info on the enemas. There is alot of good info and support here. I hope it helps you.

 

[Trysha]

crohn's forum

to imisspopcorn
thank you for your message of support.
having read some of the posts I am feeling more fortunate than alot of others on this forum

 

[Trysha]

The GI specialist returned my call yesterday and has advised to continue the colifoam for the one month course as prescribed and then stop it.
He wants to see if other symptoms abate after discontinuing but has said to notify him immediately should symptoms worsen.
He has said it may be then necessary to continue the colifoam as well as adding other medication.
I am most grateful for the information and support I have received from this forum.
It has been very helpful and has lifted the depression no end.
annsplash

 

[My Butt Hurts]

Well yay! I am glad that we have relived some of your depression for you. This is a great place to find support, so keep asking questions.
Welcome to the forum Annsplash!

 

[JillianB82]

Welcome to the forum!!! I hope your GI can figure something that will work out for you soon!!!

 

[Trysha]

thank you for the good wishes
annsplash

 

[Trysha]

I need some help in making a new decision.
I completed the months course of cortifoam enemas.
A few days later , bowel movement increased ranging from 3-7 a day.
Some of the pain returned but was milder, there have been small amounts of blood in the stool.
At times I have unexpected nausea but all the symptoms are bearable.
Sometimes there is epigastric and right side slightly dull ache.
The instructions from the GI specialist were to resume the cortifoam if any symptoms returned and not to wat.He also said to call him and let him know,and he might prescribe some tablets as well as cortifoam. He did not specify what that medication would be.
Since I am feeling reasonably weel, even with some symptoms, I am reluctant to restart the cortifoam steroid.
I am unable to call the specialist since it is the weekend and I do not consider my condition requires immediaate action from him.
So I have a quandary---- do I restart the cortifoam or take a chnace on symptoms
going away on their own.
Can anyone help me with this.
I would be very grateful
annsplash

 

[My Butt Hurts]

If you stopped the cortifoam, and your symptoms came back, and your doc said to start it again, I would think you should start it again. What tablets did he say you may be starting?
If you are "going" up to 7 times a day, and are getting pain back, I can't see how you wouldn't want to continue on it. Maybe I am missing something in your story?

 

[Trysha]

to My Butt Hurts

The bowel movements were 7 two days after stopping the cortifoam but since then have reduced to 2 - 3 a day.
I am reluctant to resume the cortifoam steroid if it is not necessary and was hoping the symptoms would go away on their own with time.Since I am newly diagnosed I have no experience with the course or outcome of the disease but am learning from this forum.It seems to me that I am not so ill as some on these pages.
The specialist only said he may prescribe tablets without specifying which medication .
I am very grateful for your reply and relieved to find support from these pages.
Thank you for the help annsplash

 

[My Butt Hurts]

Ah, I see. In my experience, Crohn's symptoms don't usually just go away on their own, and the quicker you stop them, the easier it is to keep them calm.
If you are a mild case right now, you might be prescribed one of the -asa drugs like asacol, sulfasalasine, or pentasa. Where are you located? They might be called different things where you are from. I took sulfasalazine alone for a few years right after diagnosis and it treated me very well. These mild drugs usually don't cause any adverse side effects. Like you said though - no emergency, call on Monday.
Let us know what they say.

 

[Trysha]

Thank you so much for a helpful reply.
Judging from your experiences,
I think it might be prudent to restart the cortifoam today and then see what Monday brings from the gastroenterologist.
It is so helpful to have someone with experience to talk to and I am very grateful for your help.

I am from Ontario, Canada.

 

[Trysha]

Monday came---I called the GI specialist and listened to a recorded message from the secretary saying she would be away till Sept 8th and in the event of emergency to go to the nearest emergency room.
No help or advice as to how to reach the GI specialist.
Just as well that I am able to wait for next week's appointment.
Very sad state of affairs in medicine these days.
It would appear hospitals have become a big business run for the benefit of staff and top echelon, patients are a necessary nuisance on the way to the top.
Hard to believe a secretary has this kind of power.
I also learned today that this hospital is placing male and female patients in the same room!!
Maybe I will go the holistic route----------or just give up and die---stop being a nuisance to the medical profession.
I would dread going into this hospital system as an inpatient,
Apparently, staff have been told a patient goes where there is a bed!!
All too depressing
annsplash

 

[Jefferson]

Wow Ann that is unbelievable! Where are you in Ontario? Are you close to the Michigan border? Henry Ford has a wonderful IBD Clinic in metro Detroit and a bit further drive is the renowned Cleveland Clinic.

Keep the faith, I know it's difficult
Jeff

 

[GoJohnnyGo]

Wow, sorry to hear about your wait. I'm in Alberta, and waited nine months for an gastroenterologist appointment. Originally, I was told I might have to wait 14 months! I finally got angry and told 'em they left me no choice but to consider going out of country, or to resort to quacks. They booked me the next day, LOL.

I'm a pretty laid back guy, I had to get very angry in order to get treatment. I didn't care at that point whether I was following protocol. Sometimes you just have to demand treatment.

Hope things work out for you!

 

[Guest]

hi Ann and a belated welcome to the forum!

unfortunately experiences such as yours where consultant's secretaries are either too busy to respond to calls or they're away for a length of time is kinda the norm here (i'm in the UK and have this scenario at lot). it's a shame there isn't a provision for stand-in support when this happens as, like your recent problems, it's not always an emergency but we could do with advice or direction.

regarding the cortifoam, i agree that you should keep on it at least until you get to see your consultant.. even if it's just keeping the flare calmed a little, that's better than letting it get worse. and has anyone advised you regarding diet while you're having pain and discomfort?

please try and keep positive... i know it's hard, not only is the diagnosis hard to accept at first, but the symptoms get us down when they're on a daily basis. we really do understand.

 

[Trysha]

Wow Ann that is unbelievable! Where are you in Ontario? Are you close to the Michigan border? Henry Ford has a wonderful IBD Clinic in metro Detroit and a bit further drive is the renowned Cleveland Clinic.

Keep the faith, I know it's difficult
Jeff

Thank you Jefferson for your support.
I do not drive but could take a bus to Detroit if necessary.
It is certainly worth knowing of the option.
However, my health insurance is under the Ontario government and for which I pay dearly in income taxes.
Although retired my tax is similar to when I was working.
The government gets it all ways.
The health system was much better when it was run by physicians, and not these big business moguls.
I am considering taking private insurance but insurers do not like taking on liabilities like me.
I worked 40 years in the hospital system and ran a department working long hours over time without recompense since it was a management position.
This is the thanks we get from the government.
Hope you are doing well with your health issues.
I am so grateful for the support from you and everyone on this forum.
It really helps not to be alone.
annsplash

 

[Trysha]

Wow, sorry to hear about your wait. I'm in Alberta, and waited nine months for an gastroenterologist appointment. Originally, I was told I might have to wait 14 months! I finally got angry and told 'em they left me no choice but to consider going out of country, or to resort to quacks. They booked me the next day, LOL.

I'm a pretty laid back guy, I had to get very angry in order to get treatment. I didn't care at that point whether I was following protocol. Sometimes you just have to demand treatment.

Hope things work out for you!

Hello Johnny
Thank you for the support.
It rather seems as if some provinces are importing malpractices from the UK system
I wonder how we can counteract these systems.
It is grossly unfair to take our tax money and ? invest it elsewhere??
I cannot remember the last time I saw a public accounting of where all this money goes.
Could it be inflated salaries at the admin levels?
Don't suppose we are going to know.
Hope you are feeling better and that your treatment has been sorted out.
annsplash

 

[Trysha]

hi Ann and a belated welcome to the forum!

unfortunately experiences such as yours where consultant's secretaries are either too busy to respond to calls or they're away for a length of time is kinda the norm here (i'm in the UK and have this scenario at lot). it's a shame there isn't a provision for stand-in support when this happens as, like your recent problems, it's not always an emergency but we could do with advice or direction.

regarding the cortifoam, i agree that you should keep on it at least until you get to see your consultant.. even if it's just keeping the flare calmed a little, that's better than letting it get worse. and has anyone advised you regarding diet while you're having pain and discomfort?

please try and keep positive... i know it's hard, not only is the diagnosis hard to accept at first, but the symptoms get us down when they're on a daily basis. we really do understand.

Hello Dingbat
I am grateful for your support and for the existence ot this forum which has been most helpful to me.
Having family in the UK I have been kept up to date at all the negative practises there which have been allowed to become the norm.Some of my family have suffered from them.
I do hope the Liverpool solution never finds it way here.
Who are these people deciding to end lives? and in such a degrading and cruel way.
It is very depressing to find that these malpractices are being adopted in Ontario
maybe due to the influx of consultants who have emigrated here from England.
Secretaries work for these consultants and it is my opinion that they have the control over their staff and should ensure that a message from a secretary is given in a postive manner and should include very clearly how to reach that consultant.
A department does not revolve around a secretary.
Strangely, of late these people appear to be called admin assistants???
Hospitals exist for patient care and comfort and consideration and support for the patient should be the norm.
A patient should never be left to feel there is lack of or no support available.
Sadly, the hospital I attend is a teaching hospital which is highly regarded at the international level.
Too bad the standards are dropping.
Sorry that my depression is so clearly on display here.
I am so grateful for all the support I have received from this forum.
annsplash

 

[GoJohnnyGo]

Sorry that my depression is so clearly on display here.
I am so grateful for all the support I have received from this forum.
annsplash

Don't worry about it. Crohn's is depressing. It tests the resiliency of even the most chipper amongst us. It's okay to get down from time to time.

I find what helps me is to try and help others -- even if it's only semi-anonymously on the interwebs. That's the great thing about this community.

Take care, and hope you feel better soon!

 

[Guest]

Don't worry about it. Crohn's is depressing. It tests the resiliency of even the most chipper amongst us. It's okay to get down from time to time.

I find what helps me is to try and help others -- even if it's only semi-anonymously on the interwebs. That's the great thing about this community.

Take care, and hope you feel better soon!

well said, Johnny

also, Ann, pampering yourself a little and not expecting too much of yourself on your bad days helps too. hope you feel more like your usual self soon!

 

[Trysha]

Sept 8th Update: I met with the GIspecialist today.
We had a good discussion about cortifoam and alternatives.
He explained there is very little uptake into the body of hydrocortisone from the enema use and although there are alternatives he can prescribe he would prefer that I go back onto the cortifoam and stay with it for two months without interruption after which time he will reassess if symptoms return and in such case he may have to use immunosuppressants.
I have decided to go back on to the cortifoam and hope it will be sufficient to bring about a remission which will be a permanent one without resorting to other therapies.
So far each time I stop the cortifoam the symptoms return,---happy days?!!!
Also since I am getting some gastric symptoms he is going to do endoscopy next
week.I asked to be asleep for this procedure since I found the colonosopy very painful and it caused a drastic drop in blood pressure ie 87/45 and they administered oxygen.
Can anyone who has had gastroscopy tell me what it was like to undergo this test?.
Do I have to completely undress again for this and just wear a hospital gown.
How long will it take and do you feel OK after it.
The GI said he would be taking biopsies.
He also said he will be doing a flexible sigmoidoscopy or perhaps another colonoscopy in two months time when I finish the cortifoam.
I do find it all a bit overwhelming anf feel a loss of control over my life.
Does anyone else feel like this? I get very tired and can't sleep very well with the pain and other symptoms.
At the moment I don't really feel like living if this is what I have to expect for the rest of my life.
On the other hand I should be grateful for a good GI specialist and that he does not let me wait too long for further investigative procedures.
At least I can talk to him and he gives me time as if I am his only patient.He also leaves it open for me to decline medication and take an alternative med that he would prescribe, although he does make clear his preferred meds and procedures.
I am also grateful for this support forum and look forward to any comments and information anyone cares to make
annsplash

 

[shazamataz]

Hi annsplash

I totally relate to feeling overwhelmed and out of control. I have been in that space for the past few days and it isn't fun at all!

I feel like my whole life has been turnd upside down and don;t know how I can cope with it.

However, I suppose we just have to get on with it and do the best we can and do everything we can to keep this under control and enjoy life as much as possible.

You are lucky to have a good specialist at any rate. Mine is hopeless (but I am stuck in the public system so have to take what i can get) and seems to have no empathy for the mental/emotional effects of this or the everyday matters like needing to pay the mortgage and so on.

I hope things improve for you. Try to stay positive (though I am being a bit of a hypocrite here!) as the negative thoughts and worrying only make symptoms worse - well they have for me this week at any rate!

good luck
Shaz :Flower:

 

[Trysha]

hello Shaz,
How nice to hear from you when your problems are so much greater than mine.
I wish I had some magic fairy dust to spread around and solve all the problems.
It must be awful to have a GI who is not empathetic with patients.
You do have some fine GI people over there but I don't know for your particular area.
If nothing else do try the probiotic technically speaking it could do a lot of good and current thoughts are with crohn's being caused by a specific strain of bacteria.
Perhaps there will be advances on this and we may yet get cured with antibiotic instead of getting half killed with side effects.
Currently I am taking a multivitamin which contains curcumin, plus I am taking probiotic and I think it may be helping.
I am also getting acupuncture which was for another reason and maybe that will help me also.
I am beginning to come up from rock bottom since reading your helpful reply and other stories of people much worse off than me.
I do hope you will soon feel a bit better and capture a good remission of your symptoms.
It looks as if we have both been diagnosed at similar times.Thank you for a caring reply.
Prayers and best wishes to you
annsplash

 

[Trysha]

Hello Shantel
Thank you for the support.
Your lovely smile is very reassuring and it is so nice that people care.
I live alone and it can get quite depressing although I make a point of forcing myself to walk each day, I always feel better for it.
I can see from this forum that I have a lot to be thankful for and have not had to have any surgery.
I am becoming more hopeful for a complete remission.
The support from this forum is so helpful and it is good not to feel so alone
annsplash

 

[fenway1971]

Hi ann,
Welcome! Many of us feel alone because let's face it - we spend lots of alone time in the bathroom. This is a great place to vent, get information, find support and great friends.

 

[Trysha]

Hi Fenway
Thank you for the support
When I can get my sense of humour I will be better able to respond in more cheerful ways
I really appreciate the humourous things people say in this forum and it is verry helpful to coming up from down
Thanks to everyone
annsplash

 

[Guest]

I am beginning to come up from rock bottom since reading your helpful reply and other stories of people much worse off than me.

and that is why i love this forum, and am willing to give up so much of my time to looking after it.

it's true that Crohn's is a lonely illness, even if we know others in real life or on the net who have it - our thoughts and our pain are our own. but it helps so much to be able to log in here and reach out to others who, even if they're not suffering in exactly the same way, understand completely and want to offer support & friendship.

regarding the upper endoscopy - i've had a few. i can't remember if i had to wear a hospital gown or not. only once did i have a bad experience, where i got so anxious they couldn't continue.. so next time i explained what had happened, and they doubled up on the relaxant they give (think it was valium?). i slept through the whole procedure that time, and when i woke up i asked if they'd done it yet lol. no after-effects at all, not even a sore throat. i don't think it takes very long once the procedure starts, maybe 10 mins or so.

if you're prone to a drop in blood pressure, just make sure all the hospital staff involved know this, particularly those who are in the room with you during the procedure. don't assume they've read your notes and know - tell them on the day. and also tell them any worries or anxieties you have, they are used to it and can adjust things to make it easier for you.

good luck with it - and please let us know how it goes. keeping my fingers crossed for a good result for you.

 

[Regular Joe]

Hi Annsplash,

So many of the things you say and experience that I understand too. I'm a little bit of an older guy...OK I get the senior citizen discount and valet parking at Cleveland Clinic cheaper than the parking garage, I got a knee that needs replacement and walk with a brace, and I've spent a few days in hospitals and have been cut upon too. All of this came before the Crohns diagnosis. had the upper GI endoscopy procedure and they had me in "twilight sleep" which is different than going under. I woke up a couple times during the colonscopy and the upper GI endoscopy. I watched them working on the big TV screen for a minute or two then I asked the doc was I supposed to be awake during this? It wasn't painful, but there was some weird contraption in my mouth so I couldn't really speak too good. They did biopses and much of the stuff you say you're going to get done. It wasn't bad for me, and what was better that it gave me a clear idea of what's wrong so now I start the path of learning what to do about it.

I been depressed before for a few years back when I had the first flare that I didn't know was a flare. I had kidney stones which was very very very painful. I had a mini-stroke that scared the crap out of me. When one side went numb it was like having 6-inch needles jabbed in my arm from top to bottom - it just fell and hit the desk and I couldn't move it, my speech got slurred because half of my tongue went numb, and I thought I was gonna die or go into a coma. I understood then which was real scary about how a person might feel if he lost his or her ability to move and to talk. I was paralyzed for a minute on one side and it was hard to talk and I couldn't move but I could see and hear everything around me. I thought what if I lose everything but still could see with my eyes open and couldn't talk or move or anything. That scared the living hell out of me. It was the scariest thing I ever experienced and now even when my arm or hand goes to sleep from cut off circulation, boy do I get afraid.

What I'm saying is if you're a senior, you probably experienced a lot of life BC ("before Crohn's") and you probably got into some hurtful situations that were hard to cope with. I know I have, and I'm just "barely senior". But we can get through these things because we have in the past. Like so many here have said already, if I had to live beyond this time when my eyes are open, that is today and now, I might as well be dead. But you know what? I don't ever have to worry about having Crohn's Disease for a lifetime. I only have to worry about getting through today, just a measly 24 hours, of living with Crohn's Disease.

That my friend, is one of the biggest freedoms I have is knowing whatever I have, I only have to live with it for a day. What happens tomorrow isn't mine to behold. Tomorrow belongs to hope for me. What happened yesterday might have hurt pretty bad, but there is someone right here today that's experiencing what I lived through yesterday, and to get my mind off being sad or depressed, I realize that I can help that person today with my yesterday and how I got through it.

Another thing I'm pretty big on is "doing the math". Today God gave me things. He also took things away. So far, there's always been something left over for me to be thankful for. Annesplash, I believe you can live with this disease and inspire another person with the strength that you don't think you have - that is if you wake up tomorrow which you most likely will. Tomorrow will come and show you that you were indeed strong enough to get through yesterday. With this kind of math working in my life, I can laugh and joke and cry and sing - and now I'm learning how to fart very carefully.

I know what hell is like because I lived through it already - no it wasn't with Crohn's, but I've had a disease or two that brought me a few inches away from the grave more than once. I'll take today with Crohn's Disease on this side of the ground hands down over the alternative.

I'm glad you shared with us because there probably are many hundreds here that know just how you feel.

God bless and know that you have the strength to live well in spite of the circumstances. Your years testify to that fact. You're also worth any big or small piece of heaven that comes your way. I know sometimes the good things hide, but I'm learning every day how to keep on looking for them. I know if I can do this thing called living with a smile on my face, then anyone can do it.

 

[GoJohnnyGo]

Hey annsplash...

Seriously, never be ashamed of having mild symptoms. Even those who have more severe symptoms have also gone through milder manifestations and totally commiserate. There is no one-upmanship here. You don't get brownie points for being the sickest.

It's all about support. I can tell already that you have much to contribute here because you understand we are all in this together. People from all walks of life congregate here. Nothing else matters except everyone helping everyone else through their battles with this bastard disease.

 

[Trysha]

grateful thanks to all of you with such helpful support
reading the messages has made me feel better and not so alone.
tonight for some reason I am getting increased pain in my left side and which expands across my lower abdomen
it is a bit worrying
I have not been prescribed anything for pain
hope it soon goes away
the thought of the endoscopy next Thursday troubles me a bit
The GI said he would give me a drug which would make me sleep during the endoscopy and that I would have no recall of the procedure.
Currently I am also recovering from a subdural hematoma, acquired brain injury syndrome and it has taken months for my memory to be restored.
Is this drug going to cause any other memory loss.
So many things to think about and this present pain is worryong me
Any ideas ?
annsplash

 

[Guest]

hi Ann - have you been given any advice on how to manage Crohn's when the pain increases? if not, this is something you could look into.. maybe ask the hospital if you can see a dietician, or look up low residue diets on here..

if your pain right now is due to a flare, then it's advisable to reduce the roughage and acidity of the foods you intake (drinks too). low residue foods pass through the ulcerated and sore areas easier.. and include things like clear soups, mashed potato, scambled eggs etc... avoiding hard vegetables, anything with skins on etc... drink plenty fluids but keep off things like pure orange juice.

there's loads of dietary info on here. and you should really have been given something for when the pain gets worse - your gp can help with this.

regarding the memory issue - i am pretty sure that what they give you during the endoscopy has an extremely short-lived effect. as i mentioned previously, my last one i slept through the whole thing, and woke up feeling fine and perfectly normal. but again, mention this on the day to the doctors who are in the room with you.

 

[Trysha]

thank you Ding for your great support.
I have not been eating very well at all and yesterday had only a piece of naan bread, don't feel like regular bread.
I als had tea to drink and a soda which I thought might help the nausea.
Last night I woke up to intense pain , sigmoid srea which went acroos the lower abdomen up the right side into the stomach and through to my shoulder blades and jaws. (I don't have a gallbladder).
I could hardly move at first then I thought maybe if I get out of bed and walk across the floor it might help.
It did a little but then I thought I'd better unlock the front door and take off the alarm system in case I needed 911.
I finally went back to bed but had this mass in my left side sigmoid area too painful to touch and all the pain seemed to come from there.
Again I had to get up to relieve the pain and tried going to the bathroom, managed a limited bowel movement consisting of pellets.
There was blood on the bathroom tissue, not much.
Then I tried sitting up in bed and managed to relax a bit as long as I did not move.
Last ThursdayI told the GI about the mass I could feel and he said he had not found it at colonoscopy.
Prior to the colonoscopy my family doctor found it and so did the surgeon he consulted.
Now I have been able to find it without any difficulty on a number of occasions.
The GI did not check for it even though I mentioned it last Thurday when I saw him.
I will mention it again when I see him for the endoscopy this Thursday.
Here's hoping I have a better night tonight.
I did get up and go to Church today and was a little uncomfortable but able to walk a bit.
He had raised the subject of irritable bowel syndrome---does this happen at the same time as Crohn's?
Grateful for all the support
annsplash

 

[Trysha]

sorry,I forgot to mention that I have not been given any advice regarding foods
annsplash

 

[Guest]

Ann - i think i would have been tempted to call someone given that amount of pain, especially if it's something different from the symptoms you usually have. i take it you're on your own at home? can you arrange a system whereby you can call someone local any time during the night, maybe give them a key... a good friend or neighbour, or relative.

i couldn't begin to hazard a guess at what this mass & pain is - it's good that you don't have long to wait until the endoscopy. hopefully it will identify what's happening and get some meds to help you.

meanwhile, i really would recommend going on a very gentle, mainly liquid, diet.. you could have a partial blockage going on, or a very angry ulcerated area right now. but these are just guesses on my part, and i'm not a doctor. i just know that if there is an obstruction, eating anything hard to digest will definitely make it worse.

i have had the shoulder pain, which has radiated up to my shoulder.. it's normally referred pain from an issue affecting the diaphragm - very common after surgery when there's trapped air in the stomach/diaphragm area, but can be caused by any kind of inflammation in that area, including bad indigestion or acid reflux issues.

i'm thinking it might not be a bad idea to tell your gp what happened last night, irrespective of the endoscopy appointment on thursday - just so he knows. maybe he can recommend something to help you right now.

i so hope you have a better night, and these symptoms abate quickly.

 

[Trysha]

Hello Ding
Thank you so much for your helpful message.I do live alone but my friends all have keys to enter my house anytime.,,and wiil act if I call them.
For about two weeks now I have resorted to home made soup, clear broths and meal replacements made with milk.Usually I maintain breakfast with oat bran for the soluble fibre., but have slipped up on this recently.Today I restarted it.
I am also wondering if the cortifoam enemas are binding me up.They are very good for stopping the bleeding and usually the pain is reduced.This time it seems different.
Today I have had some nausea and lower abdominal pain.Not so bad as last night.
I did wonder if there might be a partial blockage at the sigmoid area., the pain radiates from here.
I will see how I feel tonight and tomorrow and if there is no resolution will call the GI specialist
Otherwise will wait for Thursday.
Bye for now,
Gratefully-----
annsplash

 

[Trysha]

Feeling nervous about the endoscopy tomorrow.
I am feeling better than at the weekend and since I resumed the cortifoam enemas last night,
From difficult constipation I was up at 2am with a loose blood stained BM
Again at around 4am and at around 5am, no obvious blood those times.
Around 8am after breakfast another BM this time with pencil shape BM, soft.
I had eaten a small amount of oatbran with milk and honey.
During the day aching was a bit smouldering but tonight I am more comfortable. Just had another BM soft pencil shapes with some blood in them.
I administered the cortifoam enema and I think this is helping a lot.
The GI secretary returned my call of yesterday to the gastro doctor and he is going to talk to me prior to the procedure which he said will indeed be done tomorrow.
I had wondered whether it should wait till I was feeling a bit better.
It looks as if a lot of my symptoms will be improved by tomorrow? hope he will still be able to find out what is happening.Don't want an endoscopy for nothing.
But I am relieved that the aching is less.Wish it would all go away and leave me in peace.
Hope everyone out there is having a good day
Will be back after tomorrow
annsplash

 

[Trysha]

Hello Shantel
Thank you for the much needed support.
I do hope that one day I will be able to support others in the same way as you are 'being there' for me.
It can be a lonely and bleak existence sometimes.
Will keep in touch
annsplash

 

[Guest]

good luck for the scope, Ann - i hope it goes smoothly for you. i know it's not a nice prospect, but it doesn't take long and it's worth going through to get further towards correct treatment.

you're not alone with this anymore - we're here, and we care. please let us know how it went, when you feel up to posting.

 

[Trysha]

Hello Ding,
Thank you for the concern.
I had the endoscopy this morning, did not have to undress that's a plus.
They gave conscious sedation, did not do a thing for me and the procedure is not very pleasant.However he was a skilful operator and it was soon over..he took a number of biopsies.
He found three ulcers in the duodenum. and inflammation in the stomach.
He said the ulcers might be Crohn's but have to wait for the pathology report to define them.
He said this does not account for some of the symptoms I am getting so has ordered a CAT scan for as soon as possible.He tried to get it fixed but people were at lunch so they are going to call me with the appointment after which the GI will see me again.
He has given me Nexium 40mg once a day.
I now feel quite weary and a bit despondent at the possibility of the Crohn's spreading elsewhere, so hope the ulcers will heal and go away.
I am so lucky to have people on the forum who care so much.
Thank you
annsplash

 

[Guest]

aw.. well done on getting through it Ann, particularly as the sedation didn't send you to sleep. really sorry it didn't - it's much more pleasant when it does & you wake up all done.

like Shantel says, you're getting there.. which is a whole lot better than not knowing which way to turn... you're on a path to diagnosis and relief now, hopefully it'll be sooner rather than later when you get to that point.

 

[Trysha]

hello Shantel

Alrighty - one "peek" down - hopefully one more peek either with the CAT scan, or a scope to see what is going on on the other end. The docs can get you going in the right direction with all that great information, otherwise...they are just guessing! Let's hope you can get a handle on the inflammation. The body is a smart thing I have learned...it tells you very clearly usually what is going on - we all just have to learn to listen and, well - I guess act :O)

Let us know what the CAT scan brings. Gosh...I wonder if all of these posts are a HIPPA violation! LOL!!![/QUOTe
Thank you Shantel for th e support.
For some reason I am feeling very depressed right now, probably reaction to the days news and events.
What is HIPPA?
annsplash

 

[Trysha]

Hello Shantel
Thank you for helping so much.
I live alone and it is hard sitting and thinking----
I live in Ontario, Canada, and Hippa, although not called that, does exist here.
Sometimes I think it is bureaucracy gone mad.
But we are still not so badly off as in England,with cameras at practically every street corner,in my sister's locale in Hertfordshire,UK they are setting up a parked car with cameras to monitor motorist speed.The car will not be immediately viewable by traffic.
Sad state of affairs.
Everything revolves around local councils making more money out of people.
I am going to try playing more Mozart and other great composers of classics, have heard it has great healing power.
Grateful for the conversation and love your cat!
annsplash

 

[katiesue1506]

You have Bengal kitties!??! I have a Russian Blue and he cries all the time too, but I wanted a Savannah kitty... tooo expensive!

 

[Trysha]

reply to Shantel

[Shantel]
Hello Shantel,
Thank you for your last message which I really enjoyed reading and have visited those beautiful cats repeatedly.
You can really see the leopard as they lay sleeping with your husband.
Such wonderful company and it made me feel so much better.
I am intrigued by your profession, it must be very rewarding, making the beads.
Have you ever made any cloisonne items?
Today I feel more in charge once more and had a call from the GI secretary who is organising the CAT scan.They needed a recent creatinine report for this.
Forunately I had asked my family doctor for a copy of the August bloodwork he had done to save me from more pokes.
UN-fortunately I had neglected to give them to the GI specialist and he was in process of reordering.I was able to scan the results to secretary.
He wants the scan done as soon as possible on account of all the pain and other symptoms
Hope it will be soon and get it over and done with.
Beginning to dread the weekend after the events of last weekend.
However, on the brighter side, I have your cats to 'visit' , on these pages.
Hope your sister is feeling a bit better now.
You are right about doctor visits, I end up thinking what horror is he now going to inflict??
Hoping you are having a good day
kindest regards
annsplash ontario canada

 

[Trysha]

Thanks Shantel for the support.
The thing that worries me is that the GI specialist has never ordered any blood work analysis. I dont know if this is a modern trend to save money in the hospital system or if my age is against me,I am in my seventies but usually had excellent health until the world came tumbling down.I have experienced ageism in the hospital system and it angers me.My biological age belies my chronological age, noted by the GI specialist( maybe I'll keep him!) lol.I am told I look to be in 60ish. He is very adept with the scopes though.and he is a very clear analyst with precise decisions.
Just doesn't physically check me out or do bloodwork.I am quite slightly built.
I have always walked at least 6miles daily but unable to do that at the moment.
I always go for a walk daily, and force myself to do it.It usually makes me feel a bit better even though very tired.
I want to retrieve my stamina and get this thing into permanent remission.
My arm where the propofol was injected is inflamed around the area, looks to coincide with the clear cover they put over the IV to keep the vein open..
I had told thenurse that I was allergic to adhesive dressings tapes etc,
I also saw red blotches on my face and red bags under my eyes.
Hope it is not a reaction to the propofol.
It sounds as if they may use an IV solution for the cat scan, hope not.
Time to go
Bye for now
annsplash

 

[Nancy Lee]

Hello Ann,

I wanted to welcome you to the forum...even if I am a tad late.
I've been on vacation and trying to catch up on the laundry etc since returning home
here in Southwestern Ontario.

I noticed in a post up further in this thread that you are a senior..I am one also,
live in Ontario and also close enough to take the bus to Detroit. Perhaps we live close together and could get to know one another even if it's only via email or phone.

When I am having a very bad day what I do is to remember to thank God
that I was not diagnosed until I was in my early 50's. So many young ones on here with a lifetime ahead of them....I find it hard at times to read their stories.
You and I have had time to live most of our lives in good health....(well, good compared to now LOL). I live every day in the moment and enjoy every second to the fullest. I have found a positive attitude goes a long way.

I'm so sorry you are in pain and feeling poorly right now....
hopefully the tests will come back with results soon so the GI doctor can get you on the right meds to help.

I am so pleased I found your post here this evening....
Perhaps we will become friends....and sort of lean on one another.

I hope your weekend is a restful one.

God Bless
Healing Hugs~Nancy

 

[Trysha]

Hello Nancy
Thanks for the encouragement.
You are quite right regarding thanks to God for our lives and indeed I am fortunate to have lived without Crohns up to recently.
The sad stories I read with theyounger ones makes my heart ache for them all,and I really should not complain.
However the health system really gets me down at times --we pay so much in our taxes and sometimes deserve better from some hospital staffs.
I do not like being called by a christian name I have never used, and dislike.
Hospital staff say they are required to do this by government regulation.
Whatever happened to the formal and polite address of Mr, Mrs, or Miss.
Mostly the therapy and investigations have been of high standards though and I like the doctors and most of the nurses.
Detroit is a four hour bus ride from where I live but we can always communicate through the forum
Nice to hear from you
annsplash

 

[Trysha]

Today and this evening I am feeling very achey again with increased visits to the bathroom.
thanks to the nexium i no longer have the nausea,for which I am grateful.
No news on the cat scan, hope it won;t be too long to wait.
It gets a bit depressing with all the investigations and waiting for results----and wondering what next.
I still have difficult in believing the diagnosis and the fact of having these ulcers in the duodenum-------awaiting pathology reports.
The weeks go by with watching and waiting----------wondering----where will it all end!!
annsplash

 

[Trysha]

Hello Shantel
I am so grateful for your support.
Today I was called by the GI secretary letting me know the catscan is booked for Monday Sept 28th, and clear fluids only for 4 hours prior to the scan.I don't know why that is.maybe I have to drink something.
It is a relief to know the scan will soon be over and I look forward to those results.
I like your expression of shining a light on the affected places, well said.Are you a writer? I know you are artistic.
I have just returned from physiotherapy, learning to walk again and doing quite well.I had traumatic brain injury last March and was in hospital for two months.Have had to attend physiotherapy, occupational therapy and have some accupuncture sessions which have helped a lot.
It is a bit trying handling two major pathologies at the same time,it certainly did not help the crohn's.
I am going to a retreat this weekend, and I think it will restore my soul and allow me to look inside myself to see what I can change.
The cat scan is well timed to come right after.
Hope you are feeling better and also your poor sister.
Bye for now
annsplash

 

[Trysha]

Hello Shantel,
Thank you for the info re the scan,and for all the support.
I think I can cope with having to drink something,if they put it in the other end I am not sure how I will react.
An iv I can handle, had plenty of those!
My walking is getting quite good.I get around outside with a walker for daily walks and shopping locally just up the street.
I can get on the street bus, all our buses are equipped to take disabled and wheelchair passengers,and all bus rides are free for disabled
My walker will also fold up for travel, and when out walking I can sit in it to rest.I don't have to do that too often now.
The physios are now training me to use a walking cane.,bit shaky at the moment.,but my middle name is "Have a Go"----------
I have to go to physio twice a week for two hours,and to occupational therapy for one hour weekly, used to be 2hrs but since I passed all the brain tests it is now one hour.
I have to do hand exercises since my left arm was paralysed but now I have full motion back.
They want to strengthen it.
My left leg was paralysed but I have full feeling back and can move quite freely.
I am left with an unpredictable balance problem, but that is improving also.
It does mean using the walker though and it is for use indoors as well as out.
The sedative I was given for the endoscopy temporarily set me back, and my balance was thrown, Back to normal now and I feel quite good today.
The physio also gives me acupuncture for balance and for some of the joint pain I was getting.No longer have the joint pain.
If I can do as well with the Crohn's as with the walking I will be very happy.
The neurologists said I would make a complete recovery from the traumatic brain injury syndrome, just takes time.
Can't say the same for Crohn's,but I intend to do some research on it.Later.
Hope things are well with you
Bye for now
annsplash

 

[Trysha]

Hi Shantel
It was due to a bump on the head which happened a month earlier.
I stood up suddenly and hit my head on the edge of an open cupboard door.
It was a bad bump at the time then I forgot about it, just a bump on the head!
Then all this happened.Fortunately it was a venous bleed and I spent three days in ICU with three neurologists on standby, never did have surgery,thank goodness ,and then two months total recovering with rehab in the hospital and now in the day programme. The physios and OT's have been quite wonderful.
It can happen in the blink of an eye and your sister is quite right, it was a closed head injury, and it shows we can't be too careful.
And yes---ALWAYS wear your seat belt, it saves lives.!!
Have a good night
annsplash

 

[forum contributor]

ALWAYS - Josh and I were in a rollover and it's the only thing that saved us.

 

[Trysha]

feeling nervous

Tomorrow I will be having a cat scan with contrast. (Monday Sept 28/09)
I feel so nervous about this, never had this type of scan before.,unsure of what the contrast will be, but told to have clear fluids only up to 4hours prior,and then fast from all food and liquids.
Is it going to be a claustrophobic environment, does anyone know.? If so how does anyone cope with it?
How long will it take?
What happens if you throw up, or worse, need the bathroom when the test is in progress?
It would be good to hear from all the crohnie pros
annsplash

 

[shazamataz]

Hi Ann,

The CAT scan is the easy one! Unlike the MRI where you go INSIDE a big tube (not fun) the CAT scan is a big circle thing like a donut that moves up and around you and mine only took a few minutes.

Obviously they may do things differently where you are but I found it fine. The stuff they injected into me made me have a funny taste in my mouth and feel like I had wet my pants for the first few seconds. They warned me aboutt his and said it happens to everyone but not to worry as you haven;t actually wet yourself!

The whole thing was short enough that I can;t imagine you not being able to hold everything in until it's over!

Good luck

Shaz

 

[Trysha]

Hello Shaz
Thank you for the information.
It does help to have some support.
annsplash

 

[Trysha]

Hello Shantel
Thank you so much for the encouraging support.
I guess I will be unable to rest until it is all over and done with.
Tomorrow is a long way away!
Will let you know after tomorrow.
annsplash

 

[Trysha]

Hello
I thought I posted a message yesterday regarding the cat scan but I see it is not here.
Maybe I was dreaming.
The scan went as you said , a large drink of stuff, at least a litre and half hour later the iv was set up with saline.
The radiology technologist then took the first pictures and warned me that when the contrast was put in the vein I would get that warm feeling you described, and so it happened.The pictures were then taken again and then I sat in the recovery area for about 20mins, and the iv was removed.They gave me a large orange juice to drink and enjoy, which I did.
Then I went home.
During the night I had increased pain and then in the small hours of the morning had to get up twice to go to the bathroom.
About an hour later I had very severe diarrhoea and then this continued at intervals for several hours. Probably about 12 hours of d off and on and then it stopped.Do they put laxative in that solution?
Had a bit of nausea.
This afternoon I am more comfortable but achy.
Is this the usual reaction?
My GI had told me to make an appointment with him one week after the cat scan.,at which time he would have the pathology and radiology reports.
When I tried to do this I was told by the clinic staff and later by his secretary that late December was his earliest appointment.!!!
Bad enough having these problems--- now exacerbated by the booking problems.
Very depressing , hopefully he will sort it out when he returns from his meetings.
Don't know what I will do if I have to wait that long.
annsplash

 

[shazamataz]

I am glad you got the scan over and done with - not so bad was it!!??

I think you will need to be more pushy with getting an appointment as that is far too long to wait! Remind the booking person that the doc said to call in a week for results.

 

[Trysha]

Hello Shaz and Shantel
Thank you so much for the support.
It is like having friends next door and I am so glad I joined this forum.It is the best.
I was told to drink clear fluids 2 litres plus for the next couple of days, and I am doing that.
You are so knowledgeable and one step ahead of everything I get into it seems.
The GI secretary said she would give the reports to theGI on his return and let him know about the December appointment.
He is the one who has overall charge of the GI clinic and has told the booking clerks that they MUST NOT overbook him.So it will be up to him and I think things will probably work out OK.
He has intervened once before where the appointment was set for too many months ahead.Just have to wait and see but it does add to the depression and confusion.
Very grateful for the help.
annsplash.

 

[Trysha]

thanks Shantel
I had a really bad night with the pain again.
At least I was able to retain the cortifoam enema
Now I am a bit achy, aches when I sit, when I walk and worse when I lie down.
No "d" today but Bm soft bits and one narrow piece.
The GI secretary just phoned as I am writing this.
She said the GI said the cat scan was ok and that the clinic has me on a cancellation list, otherwise the December appointment holds.
That might be ok for them but for me it means waiting to hear results of the endoscopy reports from pathology all that time.
I let her know of the current synptoms and she said if it is another bad night to let her know in the morning so that the doc can be informed.,and can prescribe further treatment if necessary.She said he can prescribe further treatment over the phone if necessary.
Now I feel out on a limb and left to cope alone.,apart from the good people on this forum that give generous support.
I am thinking of talking to my family physician when it is really bad.
I don't feel I can go on like this---don't know what to do.
annsplash

 

[Trysha]

Very grateful for the swift support Shantel.
Just have to wait and see.
Will keep you informed of any events.
annsplash

 

[Trysha]

post cat scan

Very grateful for the swift support Shantel.
Just have to wait and see.
Will keep you informed of any events.
annsplash

Feeling a bit better but had pain and was unable to sleep last night.
Today I am very tired.
Your prayers are working Shantel and I am now more accepting of the long wait to the next appointment.
After all, if the CAT scan was negative it is a bit of a relief.
Still don't understand this mass in LLQ which gets so painful and then subsides within about four days.AND it seems to happen more at weekends when there is nobody to talk to about it.
I am determined to tough it out now and will not call anybody about it.
The thought of immunosuppressant therapy which the GI said was the next treatment is enough to halt me in my tracks.
After all the longer I stay away from him the better I think.
Maybe things will go away on their own.
I am a bit tired of all the appointments and investigations.
The nexium is working for the ulcers and I think the cortifoam is beginning to work again.
So depressing all of this,makes me feel I don't want to go on living like it.
annsplash

 

[Trysha]

Thank you Shantel
What you say does make sense and deep down I realise the score with all the drugs.
As you say many are helped by the drugs.
I have great difficulty adjusting to the whole situation but some people on the forum are a lot worse off lacking a diagnosis but suffering greatly from indifference and incorrect diagnosis and worse.
At least I have a reasonably clear diagnosis
Sometimes I just don't know what to think.
annsplash

 

[shazamataz]

Hi ann

It makes me feel sad to hear someone else do sad in all this. Shantel, with her bubbly ways, has probably said all the best things to say, but I will just add that you must keep going and not give up! Otherwise what is the alternative?

I too have had moments of just not wanting to be here so I don;t have to deal with it but I had to remind myself that, actually, it's not THAT bad and stop worrying about what MIGHT happen as it hasn't happened yet! Take each day as it comes and try to find something each day that makes you smile - I find getting into nature the best cure for me.

Had a great outing with my nephew today out to do a walking track but ended up climbing up alongside the river instead. Over rocks and stuff. Slipped and hurt my leg and got soaked and was still an awesome time. So very beautiful and away from it all. We imagined we were new settlers here for the first time. Saw a Tui, one of our beautiful native birds.

And, I forgot I had Crohns for the best part of the day - awesome

 

[Trysha]

Hello Shaz
good to hear from you
I do try to go out and take walks along the Niagara Escarpment on a daily basis but it can be a bit of a challenge with a walker.Hopefully I will be able to regain my independence in the coming months but still need physio and OT several times a week.They are wonderful people that work with me.
It is a bit difficult at times coping with two major pathologies in my life but I know it could be worse.At least I have no major surgeries like some on this forum.
Your walking area sounds lovely and I have never heard of the native bird Tui,must look it up.
New Zealand is a lovely place judging from all the pictures.,as is Australia.
I was once introduced to Sir Edmund Hillary, quite an experience.He was a friend of one of the docs at the hospital where I worked and visited a few times walking the corridors nochalantly.What a brave man.
Come to think of it I have a lot to be thankful for, just that I don't always stop to think about it.
Unfortunately this crohn's diagnosis has taken a hold that I must be released from--how to do it is the big question. I have never been faced with an illness that I could not recover from quickly.
With Crohn's it seems we are constantly at the mercy and care of the medical profession.Sometimes I am afraid they will get fed up with me and give up.
It makes one feel like a hypochondriac.Unfortunately ignoring symptoms in the hope it will all go away makes a bad situation worse as I have discovered..
No matter how hard we try it gets the upper hand sooner or later.,this is the most frustrating part about it all.Nights are the worst and the longest.
Have to be like Annie (Dadddy Longlegs) and look forward to "the sun coming out tomorrow!"
The best thing about it is joining this forum and meeting uplifting people
Thank you
annsplash