I am so confused

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LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/26/2007 3:23 AM (GMT -6)   
My problems started 4 months ago after a bout of increased bowel movements from taking antibiotics. I saw a small amount of blood in the toilet and screamed!

Then after having a flexible sigmoidoscopy the GI found patchy inflamation in two parts of the sigmoid and he saw hemmorhoids (very small ones - internal). The biopsies came back negative for colitis. He told me to get on with my life and I did.

Then in September I started bleeding again and this time every day, bright red blood on toilet tissue, on the outside of stools and in the pan.

When I take Imodium the bleeding would stop and the stools would be formed, the bleeding usually came when the stool was soft. Normally formed stools just slide out and don't make me bleed generally (TMI sorry!)

I now have about 2 or 3 BM's a day but still see blood. The GI told me it was hemmoroids at my age (33). I then contacted one of the best GI's in the UK on private health to get to the bottom of it.

After a colonoscopy he has found patchy inflammation on the right and left side of the colon which he says is what bleeds meaning I have Colitis - which I am now waiting for biopsy results from. I am still seeing blood and after the colonoscopy even see mucos for the first time!

So while I am waiting to see whether I have Colitis, Chrohn's or just an infection I want to ask if others have had similar experiences.

Also whether my symptoms (2-3 bowel movements a day, no pain, no gas, no diarrhea but blood on outside of stools and in pan which looks fresh) are really what you would call an "attack" - I otherwise feel 100% and if I had not have seen blood would never even think I was unwell.

If the thought of having UC wasn't bad enough it now looks like I could have Chrohn's Colitis, or Chrohn's or Total Colitis. 3 of the worst things that I can have and also a higher risk of cancer. This is like a life long sentence of drugs and worry.

I don't know which way to turn, only 10 weeks ago I was discharged with no more than hemmoroids and now look.

The odd thing is all I get is a little blood with my BM's which subsides with Imodium, and I only go to the toilet a maximum of 3 times a day. I feel totally well otherwise and have no pain or fever.

I am so confused. I guess my symptoms are going to get worse with time?

Anyone advice on coping?

Post Edited (LondonRed) : 10/26/2007 2:40:51 AM (GMT-6)


stm177
Regular Member


Date Joined Jul 2007
Total Posts : 90
   Posted 10/26/2007 6:14 AM (GMT -6)   
Welcome.

It's important to take a deep breath.

When I first started having problems, it was gas and blood. It was only a few months later that I started having diarrhea, fever, shakes, cramps, etc.

I ignored the gas and blood, so it's good that you went to the doctor when you started having trouble, unlike me.

I don't take imodium, so maybe someone else can address that one.
Proctitis - diagnosed April 2007 (symptoms starting in October 2006)

Flares treated with Rowasa enemas

Mild food diet (chicken, rice, collard greens, no sugar, no corn, no beef/pork, etc)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/26/2007 6:23 AM (GMT -6)   
Hi and welcome to Healingwell :) I hate to say this but it sounds like you may have Crohns. Because you said they saw patchy inflammation in your colon - that is an indicator for Crohns. With Uc, there is continous ulcers/inflammation starting from the rectum not patchy like CD.

It's good that you are persuing this matter. It's best to find out what is wrong with you so you can start on medications to get yourself healing. If indeed you have either CD or UC, you may be one of the lucky ones and go years without problems or minor problems. It's good to think about the future but not to dwell on it and waiting for when the next attack is going to come on. This will do nothing but make you depressed and scared.

While your waiting for a concrete diagnosis you can visit this website: www.ccfa.org or go thru the resource sections of the Uc and Cd forum.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/26/2007 6:24 AM (GMT -6)   
I'm sorry I also forgot to say that I sincerely hope that it's not either of these disease but just infection. I reallllly hope this is the case!
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/26/2007 6:32 AM (GMT -6)   
I am even more scared now thinking it might be Chrohn's which is even worse. Also I am scared for the future as I guess my symptoms will progressively worsen over time.
 
Since the colonoscopy I have taken Imodium and the bleeding has subsided but I get this mucous substance - almost like flakey snow with my BM's.

stm177
Regular Member


Date Joined Jul 2007
Total Posts : 90
   Posted 10/26/2007 6:43 AM (GMT -6)   
The colon makes extra mucus when it is irritated.
Proctitis - diagnosed April 2007 (symptoms starting in October 2006)

Flares treated with Rowasa enemas

Mild food diet (chicken, rice, collard greens, no sugar, no corn, no beef/pork, etc)


WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 10/26/2007 8:31 AM (GMT -6)   
Hey LondonRed
 
I hope things are going well for you.
 
I too am having a hard time coping.  Since I have just recently been diagnosed with UC I really don't know too much about it to offer any real good advice.  But hang in there and you'll get through it and start to heal.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/26/2007 10:41 AM (GMT -6)   
I just got my biopsies back.
 
1. Nothing definite on Chrohn's either way.
2. Colitis confirmed. (Ulcerative not confirmed).
3. IBD not confirmed but suspected.
4. Inflammation id mild to moderate. (But not all all the way round)
 
Doctor says there is patchy inflammation on right and left hand side and he said he will give me a course of Metronidizol.
 
I think that is flagyl.
 

Does this sound serious?


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 10/26/2007 11:03 AM (GMT -6)   
Hi London Red
 
Firstly you need to try to calm down , stress will only make things worse !
 
You have come to the best place with this website , we have ALL been through what you are going through some people alot worse believe me , and we are all still here !!!
 
Try and be positive, you have your results and your Doctor/Consultant can now start to deal with your problems.
 
Im not saying things wont get bad from time to time , thats a fact of having this disease, but if you are prescribed any medication take it religiously.
 
Take an hour to read through some of the threads that maybe relate to you , i guarantee you will find some . I was diagnosed with Pancolitis in May after a 6 month flare up and a hospital stay , had all my treatment , take my meds everyday and am living my life near enough totally normally , so there is always light at the end of the tunnel.
 
Hope this doesnt come across as being a bit stroppy but youve just got to get on with it .
 
Fingers crossed for you .
 
Tab.
Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 10/26/2007 11:58 AM (GMT -6)   
Hi LondonRed..welcome to the forum!

I see things have progressed since I saw you on the HB. It sounds as though it's CD considering the separate patches (compared to UC).
Has the doctor done an upper series of the small intestines to see if there's anything going on in there?

I hope the meds help you....you might also want to check out the Crohn's board on site.

Coping....well, you've already been through a lot, and the coping process is already in progress. Having a definitive diagnosis is usually helpful, although a shock....but at least the guessing part isn't taking over.

When I was first having symptoms, my doctor said.."oh it's only hemorrhoids I would suspect...you're lucky you don't have ulcerative colitis. Those patients suffer terribly". Hmmmm. When I was finally diagnosed and told her it was UC..she said, "Well, you'll just have to learn how to deal with it". I didn't go back to her after that. What a troll.

Hang tough....I see you as being with a good gastro doc a good thing. At least he's not only saying it's hemorrhoids.
 
Welcome again,
quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 10/26/2007 11:01:35 AM (GMT-6)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/26/2007 12:00 PM (GMT -6)   
So the biospies and sigmoidoscopy didn't say anything about ulceration? Just inflammation? If so then it might be possible that you have plain colitis which can be curable (though it can take a while). I know the fear of not knowing what is going on can take your mind all over the place but keep in mind that if it truly Uc that we are here for you. On a brighter note, I've had Uc for 15 years and I'm STILL here - yes a little worse for wear but still keepin' on :)
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 10/26/2007 12:08 PM (GMT -6)   
But remember that inflammation of IBD is progressive. Bleeding would come from somewhere if it isn't hemorrhoids...so, the fragility of patchy areas is obvious.

Not all of us will have ulcerations...with CD or UC.

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/26/2007 1:14 PM (GMT -6)   

I DEFINITELY have Colitis according to the doctor and I might have mild Chrohn's too but he says the biopsies came back inconclusive for Chrohn's.

It was also inconclusive for UC but definite for Colitis on it's own. He won't know more until the he sees the progress with the meds  - this is one of the top 5 GI's in UK working out of the best private hospital in London.

So I am in safe hands, I am just confused as I feel so well and always have done. Aren't I supposed to be ill or will that come later?

UC Fighter
Regular Member


Date Joined Oct 2007
Total Posts : 89
   Posted 10/26/2007 1:53 PM (GMT -6)   
The second opinion doesn't hurt. I saw a doctor recently who didn't think I ever had UC because I went 9 years with no symptoms. He told me to get off my meds. My sigmoid in '97 confirmed UC and my colonoscopy after I saw that doctor reconfirmed UC. Doctor's don't know everything and if I've learned anything about UC, IBS, etc is that it's different with everybody.


Current Prescriptions:
 
50 mg Prednisone per day, 1 x per day
1000 mg Sulfasalazine, 4x per day
1 Mesalamine Enema per day


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/26/2007 2:02 PM (GMT -6)   
UC Fighter, so are you now off meds? Did he see your colon before telling you to get off meds?

UC Fighter
Regular Member


Date Joined Oct 2007
Total Posts : 89
   Posted 10/26/2007 2:28 PM (GMT -6)   
I got off the meds when I saw Doctor A, who also scheduled me for a Colonoscopy to see Doctor B (who I saw 10 years ago). After a week or two (off the meds) I was miserable and communicated my symptoms to Doctor B who put me back on the meds and I improved immediately. Doctor B at the Colonoscopy confirmed the UC.
Current Prescriptions:
 
50 mg Prednisone per day, 1 x per day
1000 mg Sulfasalazine, 4x per day
1 Mesalamine Enema per day


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 10/26/2007 2:33 PM (GMT -6)   
How can a biopsie come back negative for colitis? They test for inflammation.. You cant test ulcerative colitis like they do other ailments.. Hence all the wrong diagnosis'..
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3655
   Posted 10/26/2007 3:01 PM (GMT -6)   

Harpo I lost you're email address anyways, I wanted to say, things are looking up for me! You post for Pro-Bio got noticed by several people and I think most are happy. I'm happy with it. I didn't realize you can over populate you gut with good bacteria. I guess there's fine line. I was taking 3-6 pills a day for a while there and I heard that's not good to do. I'm back to just two one in the AM and one in the PM. That's my personality. All or nothing. Gosh, I need help with that. It's like, if I find a sandwich at a restraunt I will eat it everyday until I'm burned out on it. I find a pair of pants that fit great, I want every color. Moderation, I need to learn this skill.

Londonred, don't get all worked up b/c I too for months just had blood and then my stress level with a new job and a new home, moving to a all new area of the state put me over the edge. I believe you can try to help yourself at this point by eating right and remaining calm. Don't think about "is it going to get worse" just say I'm going to get better and my body can heal itself, it really wants to be well.

I'm not totally cured, I'm on my way. I'm feeling better every day. I may have a set back due to my diet, but over all I'm better than I was before I stated medicine after my scope in September.


I had the Rocephin shot and 2 weeks of Omnicef, this helped with my bloating and digestion. That was 4/15/07
Had Cipro and Predison for 10 & 5 days, 7/3/07
Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Had a shot of steriods for my ear inflammation 8/31
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
On Standard Process supplements, trying a new protocal from a
natural path as of 9/10/07
I belive laughter is the best medicine, I need to laugh more!
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/26/2007 3:23 PM (GMT -6)   
Harpo - The colitis is positive on Biopsy, the Ulcerative bit is yet to be confirmed.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 10/27/2007 1:38 AM (GMT -6)   
Just to confirm that colitis doesn't mean ulcerative colitis. One has either UC or CD...not both. UC happens in the colon, starts at the rectum in a continuous pattern and can be limited or throughout.
CD can happen anywhere from the mouth to anus, happen in skip areas or in the same pattern as UC.

LondonRed...you have colitis, which is inflammation in the colon...confirmed. It's not determined if it's CD as of yet. If you don't have inflammation at the rectum and in a continuous pattern, it's doubtful it's UC.

If you do have CD....in your colon...colitis...it'll be called Crohn's colitis.

You may not ever get really ill with it...some don't. You also have it caught early...hopefully the meds will help and the inflammation will be kept in control and not worsen.

Do your homework on both CD and UC...read and learn so that you can formulate questions to ask your doctor. Get to know the medications that are used to treat and maintain CD and UC, for if you have Crohn's Colitis, you'll probably be using meds that are used for UC as well. Understand why they're used. Don't focus on aspects of which you don't have much control...you nor any of us for that matter don't know how sick we will ever become.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/27/2007 4:09 AM (GMT -6)   
I have minor to moderate inflammation in my Sigmoid Colon x 2, and on the other side a little bit. However, the biopsies have come back showing a certain thing that is always present in Chrohn's actually absent in these cells.

If I do have Chrohn's Colitis I guess it is a death sentence of the two combined :( The key question is whether I have IBD (CD or UC) or if it is just patchy Colitis - I am guessing it is a combination of two)

The one positive is that I don't have Pancolitis meaning a much higher risk of cancer, but I guess having Chrohn's probably comes close to that.

:(

I am not unwell but I guess that is to come too.

birdiem
Regular Member


Date Joined Aug 2007
Total Posts : 326
   Posted 10/27/2007 7:07 AM (GMT -6)   
LondonRed-- I can (partially) relate--I have had "undiagnosed" Colitis for a few months now. They just did another colonoscopy and they are not sure if it is UC, CD or plain old Colitis (I didn't know there was such a thing). I obviously can't diagnose you but I can say you have come to the right place. It has been so helpful to be able to talk about the medications and symptoms I have with other people here. For example, I too was on Flagyl. My only problem with it was how much money it cost, but maybe if you are in a different area it doesn't cost as much. My question about Flagyl: I was prescribed it for a bacterial problem regarding my cecal valve. Are you having lower intestine bacteria problems too? Not all Colitis necessitates antibiotics. What did your doctor tell you?
We are here if you need us...
katie
23
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
gastritis

VSL #3
Amitriptyline to slow gastric emptying
Forvia
compazine


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 10/27/2007 7:44 AM (GMT -6)   
LondonRed said...
I have minor to moderate inflammation in my Sigmoid Colon x 2, and on the other side a little bit. However, the biopsies have come back showing a certain thing that is always present in Chrohn's actually absent in these cells.

If I do have Chrohn's Colitis I guess it is a death sentence of the two combined :( The key question is whether I have IBD (CD or UC) or if it is just patchy Colitis - I am guessing it is a combination of two)

The one positive is that I don't have Pancolitis meaning a much higher risk of cancer, but I guess having Chrohn's probably comes close to that.

:(

I am not unwell but I guess that is to come too.
The one positive about having pancolitis is that for the rest of my life ill will have a yearly colonoscopy to check things are ok and that sounds good to me  !!
 
Tab

Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/27/2007 8:01 AM (GMT -6)   
Having either Uc or Cd now a days is NOT a death sentence. Far from it actually. Of course there are some very few individuals that have CD that have the most severe form of CD that it can danger their life. But these people are usually resistant to all medications. Once you get a sure diagnosis, you start on medications, you can still lead a happy carefree life because your symptoms may NEVER progress to a more advance form. You can not dwell on it, please trust me when I say this! I have had this a long time so I know what it's like to be newly diagnosed and scared. I thought for sure that when I got diagnosed that I was going to die (my mother died from complications of CD at age 38 - I was 10) and I thought I was going to follow in my mothers footsteps. That was so not the case. All forms of IBD's and Colitis's are treatable - sure there is no cure for CD or UC but we can manage it with medicatons, diet, supplements etc and we just have to get used to have a new form of lifestyle. But by NO means does it mean that is going to make you die.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/27/2007 10:20 AM (GMT -6)   
An update after today's consultation.
 
Medical Issue:
Rectal Bleeding
 
Diagnosis:
Colitis and 2x 1st Degree Internal Hemmeroids
 
Medication Prescribed:
800mg Mesalazine (Asacol) x 3 per day (3 months)
400mg Metronidazole x 3 per day (2 weeks)
 
Further Tests Planned:
Blood tests and stool tests planned this week to look for further inflammation in digestive track and/or infection.
 
Unconfirmed Yet:
Ulcerative Colitis and or Chrohn's Disease (Pathology negative at this moment, further tests required)
 
Notes:
Mild inflammation of colon starting with rectum and finising on the other side. It is not "Total" Colitis as it stops well short of cecum. Inflammation is continuious but patchy in places mimicking Chrohn's but testing negative for it at this stage.
 
God willing I will get better with these drugs.
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