Where do I go from here? Next steps...

[bettyboop12]

Hi

I am in limbo at the moment, after having bad pains in my stomach and being hospitalized, I was diagnosed with inflamation with Gastris and Duodential which was secondary to Crohns. I was on just Pentasa before that.

Now I am on Salofalk, Omerperazole, Budesonide every day. I don't feel it is working as I am STILL getting D every time I have a BM. This has been going on for 2 months now.

I had a barium the other week and they said I have 2 x 5cm narrowing in my TI. I am trying to control what I eat by avoiding skins, spicy foods, no bread or potatoes.

I think I would be okay if I didn't have the D and its so frustrating. Not going to see my GI until end of month and last time I went to see him before my Barium, he said surgery is the only option but put me on Budesonide to see if that helped first.

I really don't feel as though I have tried all the medication out there and wondered if anyone has been in the same situation and tried another pill which worked instead of the surgery option.

Any advice would be much appreciated.

 

[Aussie]

Hi Betty, do your pains tend to be crampy in nature and come after eating, if so, perhaps the TI Crohns is causing some partial obstruction - you'd probably do well with a exclusive enteral nutrition diet, would really help your tummy pains and also help the Crohns to come into remission.

Omeprazole is good for upper GI Crohns, and the budesonide is great for small bowel Crohns.

It's interesting how many people on this forum are on mesalazine (ie. salofalk), I can understand perhaps sulfasalazine in mild Crohns colitis, but most mesalazines are designed to release most of their active ingredient in the colon (perhaps a little in the ileum).

I would recommend talking to your doctor about going onto either Azathioprine or Mercaptopurine, otherwise, once you come of the budesonide, you won't be any reliable maintenance therapy, and they take about 3 months to kick in.

Best wishes.

 

[David]

I'm so sorry you're having trouble Betty I think Aussie provided great insight and and love the enteral nutrition suggestion. There's a decent chance I've asked you this before (apologies if so), but with everything you describe, have you had your vitamin B12 level tested?

Have they been able to determine if your narrowing is due mostly to scarring or is it still mostly inflammatory in nature?

Aussie, it's amazing how many here are on Mesalamine for Crohn's. What REALLY frustrates me is when it's all they're on, the formulation is for disease is the colon, and they have active disease in the small intestine. We see that a lot and it drives me crazy.

 

[bettyboop12]

Hi thank you both for your responses. When I last went to see my Gi, he just wanted me to have surgery but I don't feel as though i have explored every avenue yet. Interesting to note that he didn't ask me do have any blood tests.

Im going to my GP later to ask for a full blood count so will know what I am lacking. I hope it will also help out following my app with my dietician next week, so I know what foods I am lacking and what I can put into a smoothie.

A little thought in my head is wondering if antibiotics would help.... I do have an ear infection and hope the GP gives me some and may be, just may be it will help with the flare.

Totally not sure if it is arrowing to scarring or inflammatory. The GI didn't go into details. Just said he suggested surgery! I will ask that when I see him in 2 weeks.

I have been watching my eating habits and loving the mashed fruits/smoothies at the moment and think that's working. I have given up smoking (well day 4 on patches) and although I still feel the crave, I not having BM as often.

 

[Aussie]

Hi Betty, actually stopping smoking is as good as starting Azathioprine (if not a little better) in Crohn's disease, so good luck staying off the cigarettes!

 

[bettyboop12]

Thank you! Need all the encouragement at the moment, These dam cravings!!! I'm not really into taking tablets and rather not take any at all, so I guess that is a plus point.

 

[bettyboop12]

Well, just been doctors and they prescribed Amoxicillin as I do have an ear infection. I was hoping this would help to clear out the bad bacteria but he said I my BM will prob be lose and I said what LOSE'R! I mentioned about the B12 and blood test and he was amazed that I not had one done being on salofalk for the last couple of months.

He gave me a form to have a blood test... happy days until reception said their earliest app was in 2 weeks time! great. By this time I would have been to see the Dietician and the GI at the hospital.

He advised not to take any imodium either as this could cause further problems.... well apart from getting an ear infection, I have gained nothing at all from my visit.

 

[David]

Hmmm, I'm curious what your doctor means by the B12/Salofalk connection. I'm wondering if maybe they were thinking vitamin B9 (folic acid) as Salofalk can interfere with it. Is the test they're giving you just for B12? B9? Or both?

Hi Betty, actually stopping smoking is as good as starting Azathioprine (if not a little better) in Crohn's disease, so good luck staying off the cigarettes!

Aussie, do you by chance have a source for that? I'd love to be able to share it with others in the future.

 

[bettyboop12]

Hi

They are doing the following tests..

C-Reactive Protein
Erythrocyte Sedimentation Rate
Full Blood count
Biochem Profile
Vitamin B12

Not really sure what any of that means, he did mention he testing for inflamation.

 

[David]

CRP and ESR are inflammatory markers. The full blood count is what we call the CBC (complete blood count) here in the states and it's stuff like white blood count, red blood count, MCV, etc. The biochem profile, at least here in the states, covers lots of stuff listed here. And the B12 is of course the B12. They're not testing your folate (vitamin B9) level which the Salofalk can affect.

 

[bettyboop12]

Doesn't give me much faith when they not testing me for everything! I think he only checked for B12 because I specifically asked for it (thank you David for that one).

I really don't know why they put me on Salofalk instead of my usual Pentasa in Hospital. I figured it was going to be better for me. I was taking the Pentasa and was using what I had brought with me in the hospital but as soon as I ran out, they put me on Salfofalk.

I just think whats the point in taking it if it is making no difference! Thrown my toys out the pram yesterday and today and stopped taking Salofalk. Prob start again tomorrow though!

 

[Thermo]

They should do a full vitamin panel as due to Omperazole you could be deficient in Magnesium and because of Crohns you could be low in vitamin D, I would call them back and ask them to change the vitamin b12 test to a full vitamin panel. Low vitamins can really affect your recovery. If they saw "2 x 5cm" stricturing in your TI you don't have many options but I think its time to step it up before you have an ER doctor performing your resection. Right now you need something fairly quickly to start working for you ask your doctor about EN diet and biologics I feel its time to step up from Mesalazine.

 

[Aussie]

Aussie, do you by chance have a source for that? I'd love to be able to share it with others in the future.

Hi David, I've listed the article below.

"Review article: smoking cessation as primary therapy to modify the course of Crohn’s disease" by Mansfield, et al. Aliment Pharmacol Ther 2005; 21: 921–931.

 

[bettyboop12]

Thanks Thermo, im nearing the end of the Omperazole, just few days left so I started taking 1 a day instead of 2 and then plan to not take it after that.

I will ask for blood counts that you mentioned too when I go next week. I do feel that I have not exhausted all options before surgery and only wish my GI mentioned that there are a few. Not just telling me to try Budesonide then consider surgery. He said that once the bad bits are out then the Crohns has gone, not sure if he was just trying to swade me towards surgery as I believe once you got Crohns, you will always have it.

 

[Thermo]

You will always have Crohns but he is correct today with biologics most people after surgery don't have to have another surgery, but it's always a possibility. I believe he is trying to push you towards surgery because most doctors look at it as a 'starting over at zero' but unless you have strictures to the point of obstruction or you cannot get your symptoms under control and you have tried everything including biologics, I feel there are still more things you can try. Surgery is great but it's not fun, and your body does change afterwards due to the parts being removed so it's not all perfect. Do your strictures cause you to eat lower residue foods? Have you ever had a blockage? How is the no smoking going?

 

[bettyboop12]

Hi Thermo

Ive have I had this disease for 8 years now and still not totally tuned in to all the medical terminology, I didn't think I had a stricture, but looking into it, I guess I do, with my inflamation.

I went to see Dieitican today who said that I am eating the right things i.e. low fibre diet which is what they always suggest. I have my doubts, I had 7 BM in 1.5 hours this morning and then had the shakes! I asked what I should take if I get the shakes again and she said that a question for the GI!

She did suggest cutting out the lactose for 2 weeks to see if that helps. I drink lots of de-caf tea and coffee - more so than eating so she thinks this might be worth a try.

She also said that I am losing more weight and to eat more. I only eat when im hungry and never skip dinner or tea. I can only think im losing weight because everything just goes right through me. I mentioned that my GP told me the other week that he said im over weight and should lose some... but also added with my symptons, I should do it naturally anyway.. as if that's a plus point! Dieitician said that im just losing muscle.

Im 4ft 7 and 8.5 stone. May be a little over weight but certainly different to the 9.4 stone I was before my flare.

Smoking... erm well I did actually give up for 5 whole days last week on my patches, then it got to the weekend... back to old ways. Im not giving up on it though and will try again on Monday. Thing is I didn't see any difference in my BM all week, may be because im on patches. I don't even like it, it just bad habit.

I have never had a blockage, this is the first time in 8 years that anything has got so bad. I have made a new friend the last few months... my hot water bottle!

Still trying to bring my blood test forward and going to sit in GP waiting room in the morning just in case there is any space.

Not sure what else I can do at this stage.

 

[bettyboop12]

Finally had bloods done today. Going to see GI tomorrow too so hopefully they will have some test results on screen.

Not much energy today and stomach ache starting again. I have stopped Omperazole or 1 week now.

BM are getting worse... the D is quite frequent now and im a little worried about what the GI says. Smoothies are a no no for me, they just go ight through me.

Just want to be better but don't want surgery. I have gone from a normal- no symptom person to a full blow flare and its quite a shock.

Just trying to research what questions to ask the GI, anyone have any ideas fo me?

 

[bettyboop12]

Hi all

I went to see a GI today - a different one this time and although a little bit cautious having not seen him before, he seemed to know exactly what he is doing! He answered all my questions and took lots of time with me.

I am going to be starting Azathioprine in a few weeks which is dependant on my blood count. Going back in weeks so fingers crossed.

He said that the Salfalk and pentasa only tend to work with people with colitus.

I have 2 x narrowing/stricture and have been booked in fo an MRI to see what the surface is like to decide if it is lots of scarring or and inflamation. He did say I got ulcers in the good parts too.

Wrt bloods taken in July, my Vitamin D was low, so probably a lot more now.

He said I can take imodium in moderation but just to be careful. I feel better that I got options and he did mention that if the tablets don't work and it is scaring then they could may be perform surgery to open it.

I just hope that from now until I take the tablets that I don't get worse. Tying to stay positive though!

 

[David]

That's great about the new consultant! Based upon everything you said, I like him as well Yay!

 

[bettyboop12]

I know! Finally I have something postive knowing I am being listened too. I know it is another step up on this drug but it be good having some answers on the MRI. I had this done in 2009 and it showed some stricture then which I was not aware of. It was not explained to me anyway.

All I can do now is keep healthy, going shooping soon and getting smoothie things with spinach and flax seeds as I heard this can be good. Im going to have this for breakfast each morning.

Who knows, by the time I have my MRI, the disease may have corrected itself or going the right way at least.