Colitis / Crohns ??

Digestive health
1

Really sorry this may seem a bit long winded!

I was admitted to hospital suddenly 7 days ago because I had severe stomache cramps diarrhea and a lot of blood in my stools aswell as a fever.  I had a CT scan which shows thickening of my colon and severe calcium and vitamin D Deficiency in my blood test Im booked in for a colonoscopy a week on Friday but they said thay are sure i have colitis. 

I was discharged from hospital last night after having 2 clear das of no bowel movement.  

I have been to the toilet today and my stools are now formed and the pain is far less severe although I still have a lot of blood in my stools. 

Is this normal for newly diagnosed Colitis can anybody tell me what to expect please?? I hate bothering professionals and dont want to go back to hospital unnecciserally? 

2

Hi Linda 22361, in answer to your question sadly there is no 'normal in inflammatory bowel disease (IBD) everyone is individual which is why it's such difficult thing to treat . I guess they didn't do a colonoscopy straight away as wanting your bowel to settle. You should not be passing blood so unfortunately you need to phone them & say had bowel movement but passing blood. Are you on any medication? Don't think of it as 'I don't want to cause a fuss or I don't want to end up back in hospital' the truth is your bowel coul d be very inflamed & it could get very serious or emergency. Please ring your IBD clinic nurse or hospital or GP.

let us know how you get on.

3

Dear Linda,

Firstly, welcome to the forum. I am sure you will find a lot of advice and support from the members here.

Your message wasn't too longwinded; far from it - just look at the length of this reply!! An important thing to realise is that we are here because we too suffer from IBD and it is a 'messy' complaint, so don't worry about talking about your symptoms/experiences (within obvious limits, clearly!!).

From your post I am assuming that this episode was your first ever, and that up to then you had not had any similar previous experience of IBD? UC is a very individual condition and affects different people in different ways. I was diagnosed with UC in November 2011, after having been passing blood for the previous four months or so. It started with just a few drops on the loo paper (my GP initially thought it was probably haemorrhoids), but it just kept on getting worse and worse until a colonoscopy was ordered; I had to wait 8 weeks for mine, and the diagnosis was UC, a condition about which I hadn't heard much up until then. I'm a bit more clued up on it now!! 

UC and Chohn's do share similar symptoms, although the causes of the two are different. As you probably know, Crohn's can affect the whole digestive tract from the mouth to the rectum, whereas UC is a condition specific to the colon, sometimes including the rectum. It can affect all the colon or just a part of it.

The symptoms you have described are pretty much what you would expect of UC. Bloody diarrohea, abdominal pain and cramps. Funnily enough it has only been during a 'fare-up' that my stools have been solid, although flecked with blood.

I think you'll have to wait for the colonoscopy (not nice, but not that bad either - make sure you ask for sedation, if it's not offered; it makes the procedure much more tolerable) to get an accurate diagnosis. The consultant who did my procedure told me immediately of the result and recommended the appropriate medication.      

Do not, though, ever worry about troubling the professionals for advice. They are there to help you, and unless I have just been incredibly fortunate, I have had nothing but helpfulness, kindness and understanding from my GP and the gastroenterologists under whose care I have been placed.

Try not to worry too much (dificult at first, I know) and get as much information as you can. Consider reading the various big IBD charities' websites (Crohn's and Colitis UK) and there's a wonderful Scottish-based IBD charity 'Cure Cronh's Colitis' which passes on 100% of its income for research into a cure for these two diseases. 

I send you my very, very best wishes.

Peter A  

 

4

Thanks for your advice There is more to it than colitis 

IUnfortunately I have severe heart failure COPD and Type 2 diabetes with insulin and have various meds For my IBD ihave been on IV antibiotics (Flagyl)  and Hydrocortosonze doe the last 6 days. I also have an extremely low vitamin D deficiency that showed up and now have to have 20,800 IU daily of Vitamin D & Calcium daily for the next 8 weeks. 

Although I do have some pain compared to what it was it has certainly died down as has the diarrhea. Its my first bowel movement in 3 days and I have formed stools without hardly any pain the only thing that remains is the blood so i dont feel ill enough to be in hospital. You were right about the colonoscopy they said my colon needs to settle first before they will carry it out. 

I think the reason this hasn't really sank in yet is because until 1 week ago apart from constipation now nd then I have never had any problems with my stomache where as chest problems are second nature.  Dont know if age is a differrence but I am 53 and very over weight sad 

5

Thank you for your wonderful response I feel better already lol 

I also have heart failure and type 2 insulin diabetes not to mention COPD (Think Im dropping to bits) I think the biggest shock at the moment is where did that come from as i never have tummy problems it just happened so quick.  Do you know how long it takes to stop bleeding? or is it different for everybody and at least the tummy pains are bearable now Thanks for your reply and support Linda smile

6

Linda, an optimistic guess....with some reasonable assumptions....you may have Clostridium Difficle (CD) and not either of the other two..but I must weight heavy on your statement (they think its colitis)..OK?...Sudden is more often CD, the drug of choice for CD is Metrodinazole (flagyl)..and your improving with formed stools, pain subsided etc....bleeding continues...much having to do with amount of inflammation caused damage.  Only known cure for these three when standard medications/treatments fail is FMT..and not always 100% successful and may not be available in some countries. But it is an option of "choice if available).

Your D and Ca defficient....suggest the following with your pharmacists OK:  sublingual (under the tongue) liquid B12 with folic acid...several drops a day...sublingual or gell type K2...with CHF you want calcium to go to your bones not elsewhere. DHA/EPA 1000 mg or 180 EPA 120mg DHA...(PUFA or omega 3)...please be certain to expalin to your pharmacist your condition...they may have additional or modifications to the above. These are also beneficial for either Crohns or Colitis.

Lastly, probiotics...the combo of  discharge volume and frequency plus Flagyl completely modify your digestive flora..and in most cases destroy your good bacteria...(be aware of yeast infections due to flagyl)...put good bacteria back into your system and "often" during the day...for good bacteria to colonize or recolonize takes time..again something to ask your pharmacist as to which productis most suitable.

And if you can tolerate add quality cultured yogurt/kefir along with pure 100% Pomegranate Juice (meaning nothing added C or sugar) and mot a mixture of other juices... (only 2 oz x 2 daily)...PJ  should help you A1C. Take 1 hour pre or post your Metformin or other dbt2 meds. relax...lose some weight gradually...but be aggressive...you know well weight goes hand in hand with dbt2 and CHF...and others.

Ann

7

Hi Thanks for your response it all seems alot to take in at the momment but I do appreciate the advice. I have my colonoscopy booked for next Friday so hopefully I shouldnt have to wait too long for the results Now I need to look up Chlostridium difficille? 

8

Hi Linda, 

Many thanks for your generous response.  I'm so very sorry you also have to contend with other conditions; it makes coping with potential IBD even more wretched than it might otherwise be.

I believe that in some people flare-ups can come on very quickly, over just a few days whereas for others (such as I) the symptoms develop over a number of weeks or even months. 

I had trouble in physically tolerating the original medication (a foam enema containing mesalazine) as it simply wouldn't 'stay in'. My GP swapped it for the same drug, but in tablet form, but at far too low a dose to have any real effect, and it wasn't until I'd seen the consultant in clinic for my initial appointment (some three months after he'd performed the colonoscopy) that I got the proper dosage of mesalazine. After just a few days of taking the higher dose, the bleeding, extreme urgency and the number of loo visits had improved dramatically.

Ann and Nick are far more knowledgable than I about CD, but with the utmost respect to them, were I you I'd wait for the colonoscopy first and if you are as fortunate as I was, you'll get a diagnosis there and then, although you might well find that a few samples are removed and sent away for analysis just to confirm the diagnosis.

If the hospital is right, and you have developed UC, please don't lose heart. You'll almost certainly be well for far more of the time than you will be ill and some people (I pray you are one of them) remain in remission for months if not years - and with few if no real symptoms.

You may wish to know that there is a very promising new probiotic on the market called 'Symprove'; may I suggest you 'google' it see what you think? Possibly ask your consultant/GP if they have any views on it? From what I've seen, independent research has come up with some interesting and encouraging conclusions. It's not cheap, but if you google 'Symprove', it may be something you wish to consider once you know the reality of your situation.

Try to stay positive and not stress unduly. I know that's not easy, but stress is recognised as a condition that can help 'trigger' flare-ups.     

I wish you all the very best for your procedure next Friday, and please don't forget to let us know how you get on.

Take care!

Peter A

 

9

Hi Linda,

just looking for an "improvement update"  since you stated some improvement in stool form, pain reduction, but yet some blood in stool.

Claudio

10

Hi Claudio

Here's my update so far

I know longer have diarrhea and the pain has certainly subsided to what it was . I have only been to the loo once since my hospital discharge which was still loaded with blood. Every time I do go to the loo there is blood when I wipe myself. The difference in my symptoms is that I now feel constipated all the time and have indigestion and really bloated. I am booked for my colonoscopy a week today and everything for prep is already here lol

Thanks for your interest regards Linda smile

11

Hi Linda,

my concern mirror's Anns...Unfortunately a course of antibiotics can create digestive disorders. And soon the colonoscopy prep will do further insult. What to do? Quickly up your intake of cooked leafy greens...preferably much more than usual put thru a blender. Consider psyllium husk powder (not metamucil) perhaps 1/2 teatspoon with plenty of water. Take with "probiotics"...the psyllium is both a prebiotic as well as a chaperone to probiotics that are "not" acid resistant. Since it contains "inulin"...too much can cause gas...therefore 1/2 teaspoon not a tablespoon....you can gradually increase based on your results.

This particular prebiotic also helps boost the lactobacillus Bif...along with a few others "in your colon".

Would suggest you use "google scholar" to further your understanding of Ann's suggestions... at the search box type in "PUFA's and colitis"...and continue on to the others such as PJ. You'll find that K2 is really very important in your dbt2/heart condition ..simply its the policeman/woman that directs calcium to your bones...you don't want to deal with calcifications...and was your D supplement merely D or D3? Something else to study via google scholar. You seem to be quite savy and yet have difficulty with weight....as does nearly half the world...but you must put the "pedal to the metal" Linda....hope you can......adio Claudio

12

Linda, if my previous post does not clear, will send a PM with the information. Sometimes it takes 24 hours to clear?  there are certain words/products/sources etc  that  trigger an auto suspension. And have learned moderators usually do  good work......Claudio

13

Claudio, would you PM me with your "in linbo" post?

Gracias...Ann

14

Hi Claudio 

Thanks for the info there seems to be a lot to take in over a few days.  It is my vitamin D3 what is the problem, all I know is my bones have been extrememly painful for sometime and I just put it down to arthritis.

The hospital told me I wasn't digesting food properly therefore not getting the vitamins I need. 

As for weight I have struggled with this for the last 10 years since my conditions have deteriorated.  I am  on the top prescription for Levothyroxone 350mg which they haave reduced in hospital to 250mg. 

I have been on and off steroids  every other month for the last 20 years due to my Bronchiectasis and COPD. My heart failure became very apparent in February this year when I was diagnonsed with severe left ventricular FS and at the time my lungs had filled up with fluid.  I was also put on insulin from February due to my diabetes whicch as yet is still unstable.  The consultant gave me a new tablet Alogliptin to go with the insulin and said it should also help with not putting more weight on. To be fair since February I have lost 22lbs but alas I need to lose about another 50lb.  I must be the only one I know who spent a week on a drip in hospital and lost no weight whatsoever lol.  But hey ho onwards and upwards.  Thanks for your support every thing is so new and it seems there are so many possiblitities of what type of colitis I have that I will be glad when I have the results.  

15

Thanks very much Linda for being so specific and descriptive...yes your on a tough road...but you can yet cruise.... with caution........I must run to meetings...all day...am onthe West Coast of USA....what I want mostly for your understanding is that supplementing with D or D3 along with  being dbt2 increases the risk of further calcifications..thus k2...but because you are most likely on warfarin type meds...a pharmaicist needs to be consulted...too many dr's miss this connection...and an inhibitor is considered important...along with proper dosage....we have suggested in healthy non dibt2 when supplementing with calcium and D or D3 to include k2 at 50 mc..not mg. Also we prefer calcium citrate vs carbonate.. check these out with your pharmacist before all others....the colon at the moment is less of a priority although important for sure. Later this evening may present you with some absorption info.... PM me with all of the meds you are presently taking...

Claudio

16

With the left ventricular dysfunction, ARB's are usually the drugs of choice..and they limit absorption of D. Cardiologists suggest D3 supplementation along with an inhibitor under most consitions..in particular  DT2's.

17

Hi Linda, have a moment in time.....see that you've listed Ciprofloxcin

at 500mg daily every two weeks....meaning you cycle...2 weeks on and 2 weeks off?...also do you know why or for what  it was  prescribed for?  this antibiotic  can foul up your good digestive flora....usually most good gastro's will suggest supplementing with probiotics  durig administratiion of cipro...as well as some other antibiotics...but some do not??...its kinda like kill and replace or take out and put back....hopefully kill the bad guys and put back in the good guys..a reminder that the colonoscopy "prep"  too will remove good flora...hope that minimum or no blood via wipes now....

Claudio

 

18

Hi Claudio 

I take the cipro evry two weeks because of my bronchiectasis as a maintainance doze 

I am pleased to say I am no longer bleeding stopped 2 days ago at the moment I have quite bad indigestion, really bloated wind and heart burn as well as a burning sensation in my stomache don't know if this is what i should be expecting but i certainly feel better than i did.  I keep getting cold sores and pains in my joints.  I have managed to lose 7lbs without trying really this week lol I also keep getting constipated and although I am trying to be careful with what I eat the indigestion gets worse. I have to start eating soft food tomorrow in prep for y colonoscopy on Friday.  Will they tell me the outcome on Friday?

19

Hi Linda, and I am too most pleased to learn..no more bleedings...

I don't know  what the policy is in your country/clinic/dr...here, once sedation has worn off and your 10 10, RN's advise dr your OK...dr will come by, generally give you "whats what".maybe schedule an office appointment...at least that's how its done here at our Hosptial/endoscopy centers. Our doctors don't like to leave a patient in "limbo"..especially on a Friday giving them time to  FRET over a week end. I'm anticipating "good news"..

..colon is healing...if not already, start taking pre biotic (psyllium husk powder) as suggested along with some probiotics...plenty of quality yogurt if tolerated...this ought to get  your pain, bloating, and constipation under control...and stay on these indefinitely. Please start yesterday if not already,  and let me know quickly how it goes.. Again happy your feeing and doing better...Claudio

20

Hi Just an update on how things went with the colonoscopy

The Dr says there is no signs of crohns or colitis and has took some biopsies. He seems to think it may be my diabetes but hasn't explained anything else. Although my bleeding has stopped I still have severe indigestion every day I have cold sores every other day I have diarrhea and constipation a constant burning in my stomache. Heart burn at night a feeling of urgency but can't go and although I am pleased to have lost weight I have lost 9 lbin 7 days without trying and have no appetite. Is there any other suggestion I'm taking probiotics and living on indigestion remedies.