Concerned about UC (CD?) left untreated

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WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/17/2009 7:48 AM (GMT -7)   
This is a summary of what my grandson has been through:
 
-  Hospitalized Dec 19, 2008 - diagnosed with Crohn's, put on IV hydrocortisone, cipro and flaggel antibiotics. 
-  Sent home with prescription for Prednisone 40mg.   12 weeks on Prednisone - for 10 of those weeks, UC (or CD?) was brought under control.  GI changed her diagnosis from CD to UC.  Diahrrea stopped, stool was formed, no aches or pains anywhere.  Life was grand again! 
-  At week 8 of Prednisone, GI specialist prescribed Asacol 800 x 6.  -  At week 10, started Asacol 800 x 6 and within 2 weeks, all UC symptoms had returned with a vengence.  With every further dose of Asacol, the worse his symptoms got. 
-  Mar 19, 2009 GI took him off Asacol.  At no time did his Family GP or his GI specialist put him back on a maintenance dose of Prednisone or any other medication to maintain his UC.  Several creams were prescribed for fissures and hemroids but none worked. 
-  Apr 9, 2009 was hospitalized again - put on IV Hydrocortisone 75mg (eventually upped to 100mg) and morphine for pain.  This treatment continued under the care of an intern for 3 days.
- Allergic reaction to Morphine, was put on Oxycodone. 
-  On the 4th day of hospitalization, his GI specialist seen him for the 1st time and changed his diagnosis back to CD. 
-  He was taken off pain medication (?).  I demanded his GI treat his pain.  He was put back on Oxycodone. 
-  He has been hospitalized 8 days (9 nights) and his CD (UC?) is still being left untreated other than "hydrocortisone" which has not lessened any of his symptoms one bit - actually I believe it is making them worse, or something is! 
-  His GI is trying to get him accepted onto the Humira treatment program starting Apr 21, 2008 but (other than hydrocortisone) she is not treating his CD/UC with any other meds.

I have read here on this forum, of over 2 dozen different types of drugs being used to treat CD and UC.  Just because Asacol 800 didn't work for my g'son, why are they not trying one of the MANY other drugs available?  Why would they leave his UC/CD untreated from Mar 19 to Apr 23?  That is 34 days without treatment!   The pictures of his colon show massive ulceration, inflammation, and scarring!   He has been left to deal with severe pain and all the horrible symptoms that have arisen from this disease, untreated!  How much unnecessary damage has been done to his intestines due to "no" treatment? 
 
This is a traumatic way to treat a 19 year old, faced with an incurable disease that has crippled him to the point of being hospitalized - a disease that will put a strain on the rest of his life.  And quite frankly, I find this GI's treatment to be rather inhumane!
 
My question - is this the "normal" route taken by GI specialists in dealing with UC or CD?
 
 

 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) with UC CD flare
Current Meds in Hospital on IV:  Hydocortisone 75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
 
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
 
Previous Meds:  Prednisone 40 mg; Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments:  boost, low fiber diet.
 
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/17/2009 9:29 AM (GMT -7)   
it seems like they are on the right track with the Humira at least? A lot of his pain could be from the fissures... i've never had one, but i've heard they're awful

Has he had a colonoscopy?? It sucks when you don't know which disease it is...or if its both.. I hope you guys get it all figured out soon! I hope the humira works and i'll pray for him!
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/17/2009 9:56 AM (GMT -7)   
Thanks Sweetmelody. He had a 'scope during his 1st hosp. visit back in Dec /08 and was Dx'd with CD but within a day, GI changed that to UC. He was scoped again on Apr 15/09 just two days ago. GI now Dx'd him as CD again because of the severity of his colon.

Is it the normal procedure to go 34 (35 today) days without maintenance treatment other than "hydrocortisone" which appears to be making him sicker!? Why don't they put him back on the Prednisone short term? Antibiotics, Cipro, Flaggyl, maybe the fissures are infected? Something, to tide him over till the Humira treatment has been okayed? Why not try 6-mercaptopurine or a related drug like imuran before Humira?

On one website it states this "Cyclosporine A may be used with 6-MP or azathioprine to treat active, severe ulcerative colitis in people who do not respond to intravenous corticosteroids." My g'son fits into this catagory - IV hydrocotisone is not working for him, nor did 5-ASA (Asacol). Am I missing something here?


Can't they use diphenoxylate, loperamide, to treat the diahrrea?
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) with UC CD flare
Current Meds in Hospital on IV:  Hydocortisone 75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
 
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
 
Previous Meds:  Prednisone 40 mg; Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments:  boost, low fiber diet.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/17/2009 10:46 AM (GMT -7)   
Treating just the D without treating the reason for it can lead to the development of Toxic Megacolon. So unfortunately just adding some Immodium is not going to help your grandson.

It is unfortunate that they have not tried any other medication during that time. If his reaction to the Asacol was an allergic reaciton to mesalamine, there are few other oral choices. Colazal (basalazide) or sulfasalazine would be the two I can think of. I'm not sure if there are other options for Crohn's disease.

I would be curious to get a second opinion about treatment. Cyclosporine may be an option if it is UC, I'm not sure about Crohn's. You could ask on the Crohn's board.

Please make sure your grandson is getting a calcium supplement. Prednisone (oral corticosteroid) and solumedrol (IV corticosteroid) can increase bone loss. Calcium is one way to try to combat that. Although with his colon in such a friable state, it may be hard for him to take.

What kind of diet do they have him on in the hospital? If he is still eating food make sure it is low residue as to not aggravate the already angry colon. I would also think avoiding milk products would be wise. If he is not having good luck eating, they may be able to put him on IV nutrition.

Keeping the pain under control is keep. Perhaps an antispasmodic such as Bentyl would help to stop any cramping. It is very tough to sleep in a hospital, but sleep is key in healing. Perhaps a set of ear plugs and an eye mask - along with a blanket and pillow from home will help to sleep more/better.

Thoughts are with you and your grandson!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  yo-yoing between remission and a mild flare
Lialda 4 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: April 1 after the tooth infection is gone :(
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 188
   Posted 4/17/2009 11:09 AM (GMT -7)   
hi there i feel for what your going through i felt so sorry for my mum when i was in hospital neither of us really knew what was going on and mum was so worried and strung out she ended upgetting sick as well dont let that
happen,look after yourself, as regards the treatment your grandson is receiving,i think it can appear as you are describing,quite pointless and inadequate,but the docs can only try different drugs and hope for signs of improvement, the ivsteriods have not worked so there is little point in giving more pred which is not as strong,
drugs like imuran will take to long to have any effect he sounds to unwell for that i think the humira sounds his best option,you could ask about cyclosporin like i had when i was at my last chance to hang on to my colon but opinion is very divided about that drug it worked me,you could also ask about an introvenous diet and complete bowel rest,they would not do this for me,but studies have shown it can be as effective as iv steriods forsome people sorry i cant be anyreal help i wishin your grandson as peedy recovery take care anna
ps sorry the caplock is broken on my computer

aned
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 4/17/2009 11:32 AM (GMT -7)   
Find a new doctor! I know that is easier said than done, but you obviously don't feel like your grandson is getting caring, informed care. I watched a close family member struggle with a serious disease without compassionate care, because she didn't want to be obnoxious or demanding. Please, please, seek another opinion and keep seeking until you feel comfortable with the level of care. If they are not trying other medicines your grandson should know exactly why. It might be the right decision, but any doctor worth anything would make sure the patient was informed and understood the choices being made. Good luck and speedy recovery to your grandson!

hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/17/2009 11:53 AM (GMT -7)   
Maybe I missed this but why are they not using Remicade - it has a higher success in Crohns than UC and I believe it can heal fissures. A lot of people get it when they go to the hospital so it shouldn't take that long to get approved/ I don't think he should go that long with out anything
Jessica 27/F
Remicade
Lialda 4.8GM
Citalopram 20 MG


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/17/2009 12:21 PM (GMT -7)   
Hana24: We live 2 hours away from any GI Dr. or hospital. Remidcade would have required constant monitoring by the GI, too many road trips back/forth. She felt my g'son could administer Humira himself. Humira needs a "special approval" for payment from our provincial medical plan which take time to get the "go ahead". Without Insurance coverage, this drug is too expensive for my g'son. And, yes, most hospitals would have Remicade, Humira, etc. but the hospital he has to be treated at didn't even have diltiavem gel 2% in Proctodan hc - I had to order it from an outside Pharmacy and have it delivered.

Aned: There are only 3 GI's in our region of care and being as my g'son is presently in the hospital under the care of one of them, I feel it would cause problems for my g'son if he were to try to change GI's midstream in treatment. Once this GI has his disease under a "bit of control", I plan to seek a 2nd opinion.

Annelise.G: Thanks for the encouragement dear. The hardest part for me is knowing that my g'son's health is "beyond my control". It's hard putting him in the "care" of another person, let alone a doctor I have met only once.

Dakotagirl: He is on a low fiber diet but is eating very little. The doctor won't consider IV nutrition.

His GI was in to see him this morning - he asked about the antibiotics and she said "no". He is still waiting to hear if his medical insurance will cover the Humira - the GI said this decision could take another week. Meanwhile, he is left on "hydrocortisone" which is not helping in the least.

His bone density is fine. He was on Didrocal (Calcium & Vit D Supplicment) 90 days. He's finished that now but we are told that will hold him for awhile.

Thankyou to all of you. I'm such a worrywart! It's a relief to have this forum to come to and vent.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) with UC CD flare
Current Meds in Hospital on IV:  Hydocortisone 75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
 
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
 
Previous Meds:  Prednisone 40 mg; Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments:  boost, low fiber diet.
 
 


Judy2
Forum Moderator


Date Joined Mar 2003
Total Posts : 9645
   Posted 4/17/2009 1:26 PM (GMT -7)   
I'd suggest you and your grandson ask the GI for a conference. Ask why he isn't being treated with maintenance drugs; there may be a good reason that we don't know. Generally in the US, if Asacol causes problems they try Balsalazide for UC. It's somewhat normal for them to be cautious with narcotic drugs, because they can cause serious problems at times, but it's good that you spoke up. Ask about pain control, treatment plans and what they expect for him.

Specialists are always in a hurry, by the way. I've been known to casually lean against the door to talk to them so they can't leave until my questions are answered.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/17/2009 2:37 PM (GMT -7)   
Hi Judy: Thanks for replying. Balsalazide is of the same drug strain as Asacol and according to my g'son's GI, if you are allergic to Asacol you should not take any other 5-ASA drugs. Two days ago my daughter and I did have a bit of a conference with my g'son and his GI at the hospital, al beit a very short one. The GI is determined to treat him with Humira or Remicade. She will not put him on any other drug course at this stage, not even antibiotics. Why, I don't know. All she would say is that the antibiotics could set him back as far as her planned treatment goes. She appears to be quite concerned. My g'son's colon is in very bad shape, that much I do know.

The GI said she made a "judgement call" reguarding pain meds. In her words "fissure and hemroids do not concern me. I don't consider them painful and so, don't prescribe pain meds for that". After seeing the colonoscopy pictures, do apologized to my g'son and reinstated his pain meds, realizing that he was indeed, in pain.

It still concerns me that a GI specialist would have an "attitude" like that toward fissures and hemroids as I know they can be extremely painful. The RN treating my g'son, said Oxycodone is a normal pain med for both of those conditions. We are all concerned about the use of any narcotics as well as the horrendous UC and CD drugs required. That's a given. But thankfully, that pain med issue has been resolved.

I just want the doctor "start" treating his disease!
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) with UC CD flare
Current Meds in Hospital on IV:  Hydocortisone 75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
 
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
 
Previous Meds:  Prednisone 40 mg; Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments:  boost, low fiber diet.
 
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 4/17/2009 3:26 PM (GMT -7)   
Get him a new doctor. It's crucial to have a good doctor with any chronic illness. When you get a new doc you can discuss alternate treatments with them.

Also, if your grandson has ever had a c-scope the distribution of the ulcerations would be indicative of which condition he has.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/17/2009 3:49 PM (GMT -7)   
The choice of drugs could be in response to his symptoms. Is he having lots of diarrhea, cramping, and blood? Or is it pain that he's complaining of? The harder Colitis medications are usually given to treat inflammation, not pain.

Is he genetically prone to UC/CD? If so, he might have to battle with having Colitis for the remainder of his life or until he gets his colon removed. I wouldn't be too anxious with asking for harder Colitis medications. They can have some serious side effects.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 4/17/2009 3:58:43 PM (GMT-6)


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/17/2009 6:22 PM (GMT -7)   
The biopsies from the 2 'scopes lean towards UC but his GI feels strongly that he has severe acute CD - at least 20 cm of his colon/rectum are almost swollen shut, deeply ulcerated, very angry red, inflammed and scarred. His pain is just below the belly button all the way down to his anus which has fissures (open, bleeding cracks) and external hemroids. The diahrrea is frequent, watery, very loose and bloody - he can't even make it to the washroom - they have a commode right next to his bed. If he eats or drinks even juice he immediately has diahrrea. He's lost a lot of weight. His GI says its a good thing his diahrrea is loose, otherwise he could very well be toxic. When we took him into ER at the hospital on Apr 9th, he was a bit jaundice at that point in time (yellow tinged skin).

The GI is obviously choosing the treatment based on my g'sons symptoms and his colonoscopy pictures and biopsies. She is not basing her treatment by his pain. I have been told she is "very good in her field" but has a lousy "bedside manner". My g'son can handle that as long as he gets treatment for his disease.

When I saw the pictures of his colon I right away thought of the symptoms of "ionizing radiation poisoning".... that's what it looked like to me. That's scary because our town has the 2nd highest rate of Uranium leaking out of the ground (radon gas) in our province. You can imagine what my thought were! I don't want to even go there.

And yes, he does need pain meds to get him through the "inflammed" part of this flare. My g'son is aware that he has an incurable disease and realizes all too well, that he will have to deal with these problems for the rest of his life. He was told by the GI that if he does have CD, then removal of the colon may not be an option.

I feel much better seeing him in less pain, even though he is still untreated. HE is more relaxed and is the one reassuring me that everything will turn out okay! He's got a very positive attitude.

I must stop writing such long posts. Sorry! Thank you for listening.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) with UC CD flare
Current Meds in Hospital on IV:  Hydocortisone 75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
 
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
 
Previous Meds:  Prednisone 40 mg; Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments:  boost, low fiber diet.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/17/2009 7:39 PM (GMT -7)   
Has your grandson used anything like A&D ointment or Desitin on his bum? I find those help to soothe and heal the fissures or rawness from the TP and constant D. I also like Aquaphor which I can find quite readily.

Perhaps your grandson could try a liquid diet? Make sure to watch that there are no artificial sweeteners and also not too much sugar. Is Pedialyte available near you? It comes in a liquid in the baby section and sometimes in things you can freeze to make popsicles.

The reflexes in the digestive track are what is causing him to have to use the toilet after even drinking something. Definitely ask the doctor about something for the cramping. Although she may be hesitant to use them because the narcotics will already be slowing his digestion.

I hope some relief comes his way soon!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  yo-yoing between remission and a mild flare
Lialda 4 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: April 1 after the tooth infection is gone :(
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/17/2009 7:43 PM (GMT -7)   
I am surprised that they haven't suggested removal of the colon - sometimes thats the only option when it is that bad.
Jessica 27/F
Remicade
Lialda 4.8GM
Citalopram 20 MG


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 188
   Posted 4/18/2009 3:23 AM (GMT -7)   
Hi again,it seems like your really just waiting for the humira now,I'm in the uk so I suppose I'm lucky there
In the meantime I really don't see why the can't give him an IV Line for fluids,and the ellimination nutrion that is absorbed completly in the stomach,I'm sure he would feel so much better,maybe they are hanging off untill they know for sure if it is just uc,they could offer him the chioce of surgery
best wishes Anna

LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 4/18/2009 6:55 AM (GMT -7)   
WorrywartNana - I was in a similar situation to your grandson 5 years ago. I was on the toilet 30-40 times per day, always watery diarrhea with blood/mucous, and constant pain. I was on Prednisone 60mg/day, which worked for a few weeks then stopped working, then went through the whole list of other drugs ... none did a thing.

When the doctor told me my colon would need to be removed, I decided to try diet modification (he had kept saying diet didn't matter). My theory was my colon was reacting to bacteria, and that these were growing due to sugars (carbs) in my diet. I cut out ALL carbs - grains, sugar, rice, potatoes, fruits, etc., and ate only chicken breasts and low carb veggies for 2 weeks. Results - diarrhea gone, blood gone, started walking again, bowel movements down to 3X per day.

Within months I was running, swimming, and socializing again, and was excited when my wife became pregnant (son is now a little over 4). I have only had minor problems since then until recently (my current issue seem to be unrelated - upper GI/stomach), but mostly when I cheat and eat carbs (I still maintain a very low carb diet). As an added benefit, during the past 5 years I haven't needed a single drug.

What astounded me was the speed with which this change took place. Within 3 weeks I was a new man. Even Prednisone did not work so fast.

Post Edited (LuckyLindy) : 4/18/2009 6:58:49 AM (GMT-6)


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/18/2009 2:21 PM (GMT -7)   
Thank you for all your suggestion. Much appreciated. It really helps to know people care! Bless you all.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) with UC CD flare
Current Meds in Hospital on IV:  Hydocortisone 75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
 
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
 
Previous Meds:  Prednisone 40 mg; Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments:  boost, low fiber diet.
 
 

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