feeling a little scared

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mummy bear
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/14/2008 1:47 PM (GMT -6)   
HI
 
I have just joined the forum as I am feeling a little scared and overwhelmed so please forgive my non introductionx
 
Basically in Dec 08 I started to get severe abdominal cramps, bleeding, diahr, weight loss, fatigue etc.  My doc mentioned colitis at the time, did some blood tests which showed i had inflammation somewhere in the body.  The symptoms went away afte 4 weeks, so I thought nothing more about it.  Last week all the symptoms came back but much worse and more severe, bleeding is quite a lot and i notice certain foods like chocolate(why is it always the good stuff) have made it all worse.  I saw my doc again he has said he is very sure it is ulcerative colitis.  Prescribed some steriods for now until it is diagnosed and confirmed.  Steriods are making me so ill they are too strong.
 
Right now i am researching on the www and finding out lots of scary things, i'm confused and don't know what this thing is or how it will affect my life.  My doc says he is booking me for a colonoscopy which from what i have read is not very nice, he mentioned biopsy so now I'm panicking about cancer.
 
My symptoms are going away since i started to take steriods I can actually hold my food and am feeling better.
 
Does colitis always reappear?
Do remission periods last long?
Can alternative medicine and therapies help?
Does stress cause it to flare up?
Should I be very concerned for my health?
Is it very serious?...so many questions
 
Both times I have had these symptoms i am going through an extremly stressful time in my life and i dont think it is a coincidence.
 
Any words of advice or even words would help right now, I would really appreciate it.friends don't seem to understand the distress i am in so it's difficult to talk about it to people who are not going through this.
 
Thank you
 
 

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/14/2008 2:41 PM (GMT -6)   
Hi
The colonoscopy is not so bad, you are knocked out for it. The worst part is having to drink the laxatives to empty your colon the day before (use a straw). And you might notice your gut is irritated after. But it will be good to know what's really going on. Biopsies of polyps (everybody probably has them) in your colon and infected areas is routine. Again, you will probably find out they are all benign but you need to know.

Regarding your other questions, everyone is different regarding remissions, what helps and what doesn't, whether stress affects it (doesn't for me). It is serious but you can learn to manage with it, finding out what you can and cannot do comfortably, the folks here can make that learning come faster. It can change your life in many ways as you have to adjust but there are worse things. If it is/stays really bad and keeps you from living your life, surgery is an option and folks here who needed it say it was a good decision.

I talk freely here, but rarely to anyone else because it's a rather undignified disease and people do not understand (like they think you have control over it). So this forum is very helpful. Keep up the dialogue if it helps!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/14/2008 3:12 PM (GMT -6)   

Hey Mummy Bear,

It's very scary at first especially when flaring.  I was filling up toilet bowls full of blood my first flare, though I had symptoms for months before then.  You have found a great place.  You can live a full, happy and rewarding life and can do anything!  It may not seem like it now, especially being on steriods, those made my cry a lot during my first month @ 60mg.  There is a book Coping with Prednisone, about $13 on Amazon, I highly recommend it.  It really helped my understand the way pred was making me feel in addition to being upset enough over everything else.

Does colitis always reappear? I think it does in most cases
Do remission periods last long? Depends on each person
Can alternative medicine and therapies help? Yes
Does stress cause it to flare up? I think for many, but not for me
Should I be very concerned for my health? Concerned yes but it is a treatable liveable illness.
Is it very serious?...so many questions
 
You seem like you are on a good path researching, so keep on going and bring a notebook to all your Dr. visits, write down ques. beforehand and any notes during the visit.  Also, call back after if you forget anything.
 
I have had 3 colonoscopies, all three were no problem for me at all, except the stuff you drink for the prep is the worst.  Drink it over ice with a straw (do not forget the straw) over stuff you do not mind not drinking again.  There is a joke someone posted here that is funny and true about what the colonoscopy prep is really like.
 
Take care and keep on asking questions!
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/14/2008 3:14 PM (GMT -6)   
((((((((((((((((hugs to you)))))))))))))))))))) I know this is scary, but you are going to be ok. Your symptoms sound like mine, and I have UC. The colonscopy is really not a big deal at all. I just had one done, and came out of it just fine, feeling great even.

Steroids are no fun. You might try asking your doctor for prilosec, that helps somewhat. Also make sure you take them right before you eat a big meal, as big of a meal as you can tolerate. I know it's hard to eat at this time.

You should probably stay away from sugar and milk products right now. You can try them again later when you are feeling better.

Just take it one step at a time.

mummy bear
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/15/2008 3:24 PM (GMT -6)   
Hi all
 
Thanks so much for the replies, it has def given me a bit of reassurance and I don't feel that scared about the colonoscopy if you guys say it's not bad and you have been there well then im sure i can cope too.
 
I feel a little more calmer today about it all, i spoke to my doc who advised i split my steriods to twice a day and that has helped.  My side effects today seem a lot better.  yesterday i started to see things and it was scary
 
My weight has dropped so much I am looking very thin and bony since last week, it just seems to fall off me at the moment, once i get this diagnosed i hope to maybe see a nutritionist to get some advice on what to eat, at the moment i cant eat fruit and veg I can only seem to manage carbs and fish so im a little worried about that.
 
I'm trying to be positive about it now because worrying seems to make it worse, i think the more i learn about it all the better i can manage it and i really want to explore some alternative med or therapies, if anyone knows of any good options that would be great.
 
Thanks so much again it does help alot to hear from people who are and have gone through all of thisxx

Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/15/2008 3:26 PM (GMT -6)   
try and eat cashew or almond or sunflower butter. You can get most of them at your grocery store, or at whole foods. Eat it on a rice cake or white bread. That REALLY helps. The same thing happened to me. I started losing weight after the diagnosis I think due to the steroids.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 10/15/2008 4:06 PM (GMT -6)   
Hi mummy bear,
Sorry you had to find us on such terms, but welcome all the same! Healingwell is SUCH a wonderful place, I don't know where I'd be without it. Everyone on here is great and always full of helpful advice, or at the least, some gentle words and reassurance. With a disease like this, it's really nice to know you're not alone, because sometimes it can certainly feel like you are!

As for your questions...

Does colitis always reappear? -- As of now, there is no cure for UC other than surgery, so technically the answer would be yes. However, some people go into remission and never have symptoms again or go years without any, so it's not like you're gauranteed to be stuck feeling sick every day for the rest of your life! There are maintenance medications that work very well for some people to space out times between flares and keep you in remission. Hopefully after your colonoscopy if you are diagnosed with ulcerative colitis, your doctor will get you on a treatment plan.

Do remission periods last long? -- It really depends on the person. As I said, some people have one flare and then never again, some people have years between flares, and then there are others like myself who only have remissions for a month or so. You just need to find something that works for you!

Can alternative medicine and therapies help? -- Again, this depends on the person as well. Some people have found great success with diet, probiotics, supplements, etc. I personally haven't found relief in these things but maybe I haven't tried hard enough. You mentioned you wanted to see a nutritionist, and that's a great idea! Also keeping a food diary and writing down things you eat and how you feel afterwards is very helpful in weeding out your "problem foods". Fruits and veggies won't always be off the menu, your gut probably just can't handle it right now. On good days, I can eat basically anything I want. On bad days I stick with a "low residue" diet of softer, blander foods.

Does stress cause it to flare up? -- For me, absolutely. Right now I'm under an immense amount of stress and am bleeding like crazy. Exercising or doing something like yoga when you're up to it can really help.

Should I be very concerned for my health? -- You should always be concerned and make sure you're taking care of yourself as best as you can, but at the same time try not to let it run your life. I know sometimes I feel like myself as a person is defined by my ulcerative colitis and it controls everything I do, but you want to try to stay away from thoughts like that. Be mindful of things you do, medications you take and their side effects, how you're feeling, any changes in your mood/pain/stool consistency (yes.. you'll find you're looking into the toilet a lot more than you'd like) but it's still completely possible to live a full and productive life.

Is it very serious? -- Sure, ulcerative colitis is serious but it doesn't mean it's hopeless. It's unfortunate that most of the medical community and our peers don't think it is serious and it doesn't get as much recognition as it should. It can be a very serious disease and certainly not something you can just ignore and hope it goes away. And you'll probably run into people who will tell you "Well, if you just ate this, or took this vitamin, or did this, you'd be all better!" Don't listen to them and don't let them discourage you.

The best thing to do is research as much as you can. Check out books at the library, read things on sites like www.CCFA.org. Don't take everything you hear from other's personal experiences as complete truth because as I mentioned before, this disease is different for everyone. What works for one, won't work for another, and not everyone will have the same experience.


Sorry for rambeling on so much and being a bit repetitive. Welcome again and keep us posted on how things are going! :)

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Sulfasalizine 3000mg/day, Azasan 100mg

 
 


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 10/15/2008 4:46 PM (GMT -6)   
Keep a food journal, its probably one of the best things you can do for yourself. You'll learn over time what your body responds well to and what it has a hard time with. The more you learn/know, the easier it will be to live your daily life without interruption.

Also: Alternative healing does really does help if your open to it. People will tell you it doesn't work but thats bs.
EGDOL KCALB EHT NI MI

Diagnosed UC April 2003
Asacol
Rowasa
Prednisone 20mg
Remicade????


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/16/2008 6:45 AM (GMT -6)   
Hi and welcome to Healingwell :) Everyone gave you great advise so I just wanted to welcome you and tell you that you are NOT alone anymore. We are here for you 24/7 and if you should have any further questions or concerns then don't hesitate to ask ok?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


mummy bear
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/16/2008 5:06 PM (GMT -6)   

Hi

Thanks so much for all of your advice and tips I really appreciate it, so glad i found this site.x

I will def keep a food diary and try and figure out what foods are making this worse for me.  The last time I had all these symptoms it just went away on it's own after 4 weeks so im hoping it will do the same this time round but at the same time i'm trying to get my head round the fact that this will never completly go away.

It's interesting that not everyone needs the same treatment for this, it seems it just depends on each individual case.  Some people have remission for years and others only weeks.  I suppose the longer you have this disease the more you get to know it and maybe it might be easier to handle it.

I have been thinking that the last time this happened and at present, i had taken a medication called sudafed for sinus, i woke up the next day and there was bleeding, so im wondering could certain medications be triggering this off in me?

At the moment my concern is really about the steriods I am on, they are not agreeing with me at all, i am having horrible side effects ie: feeling up and down, headaches, sweats,and worst of all awful palpatations which are really scaring me to the point where they are keeping me up at night.  Today was my last day of taking them, my doc only prescribed some to tie me over as I am flying to ireland tommorow, im wondering how long after you stop taking them to the side effects stop?  From what i have been reading steriods are prescribed on a long term basis for UC , I don't think that is something I could cope with I just hope there are other alternatives.  Do most drugs fo UC have side effects??

Has anyone here been able to achieve remission through another approach other than meds? 

Thanks so much againxx

 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 10/16/2008 9:02 PM (GMT -6)   
mummy bear,

For me with my UC, I'm sure for a lot of us when we get sick we have a minor flare. I'm in remission right now, so when I get sick I have Diarreha instead of the norm. Once I'm over the bug my "D" is gone. Just want to give you a heads up on the travel. Keep watch on how your body handles the trip. I've always had problems with trips before I was diagnosed. Have a safe trip!
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


mummy bear
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/17/2008 7:37 AM (GMT -6)   

Hi Sweetie

Thanks for the advice on travelling, I live in the uk at the moment so my flight to ireland is roughly only an hour, so I'm hoping it will be ok.

I'm just feeling completly brain dead from taking steroids, my head feels like mush.  I'm so angry at my doc for prescribing them without even telling me what the side affects were or how bad these drugs are.

 

Thanksx

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