Want my life back

[Lindy Lou]

want my life back

I am 72 years old and have had crohn's/uc for 12 years. The disease runs in my family on both sides so am not too optimistic about it. Have over the years had all the usual treatments and proceedures but nothing seems to ease the discomfort or pain of it all. Have reached a stage where I want it sorted so that my lifestyle is not too messed up by the impact of the disease. Would be pleased to hear from anyone who has had surgery or knows of any other treatments which would relieve the symptoms (acupunture)!

Lindy Lou

 

[Robert747]

Hello Lindy Lou,

Just a couple of observations (I am 53 and had Crohn's about 18 years): for me keeping active, fit and 'healthy' has worked wonders - these days I am taking a low residue diet far more seriously. I read in the newspaper (Mail on Sunday) yesterday about a study which found Crohn's sufferers who have taken anti-depressant medication respond more positively - sub text = the happier / more positive you are the better you will cope.

All the best,

R

 

[Lindy Lou]

thanks

Hi Robert,

Thanks for your reply, I do try to keep to a low residue diet and I swim 3 times a week and play bowls (am an ex PE teacher) so keeping fit is important. I have been on anti-depressents for over 45 years, so qualify! Nice to talk to another sufferer as in North Devon there is no back up of IBD nurses and I often feel very isolated.

 

[carrollco]

Welcome, Lindy Lou. I know how you feel. I would like my life back, too. I'm 57 and have had the disease since for 20 years. This time, however, was my worst flare ever, so I was placed on Humira. It really works for me. I've had some minor flares since starting on it, but nothing as bad as the one that got me here. That, I hope to never experience again.

 

[Angrybird]

Hello there and welcome to the forum Lindy Lou. Are you on meds at the moment? Of so which ones? Has your doc mentioned anything about surgery to you? I had a resection last year and one thing I learnt from the process is that whilst it got rid of the stricture that was ALL it was going to do - within 3 months I was having one of the worst flares I have ever had and back on the meds. I am therefore wary of saying this is a way to go if there are still other options to try and there is no narrowing caused by scarring. Definetly check out our diet and sups forum to get further info in this area, there may be something helpful here.

Really pleased you have decided to join, I hope you can be feeling tip top soon.

AB
xx

 

[David]

Hi Lindy and welcome to the forum

Can you describe more specifically what kind of pain/discomfort you have and what procedures/medicines you've tried? And where specifically is your disease active? With that, we can hopefully steer you in a direction that might help.

Again, welcome to the forum!

 

[Lindy Lou]

Lindy Lou

I have ulcers and polyps and diverticulitis in the colon and a narrowing of gut in the solar plexis area. I have a lot of referred pain on the left hand side of the rib cage area. I am struggling with incontinance of the bowel and am tired almost all the time. In the past I have taken all the meds available, and for a time was on Infliximab which did help. Only large doses of Prednisolone will calm things down but I have gained 2 stone in weight and look 6 months pregnant with bloating! I have bleeding and gas and explosive proctitis (stand back)! Now a hemmeroid has popped out just to complete the picture. My last blood test showed that my Serum C reactive protien was 18, does this just mean I have imflamation?

I see my GI tomorrow and hope he can come up with some help. Can an MRI scan show the overall picture? Thanks to you who have shown an interest in my problems.

 

[David]

Hi Lindy Lou,

Yes, CRP is an inflammatory marker.

I'd research and discuss the idea of enteral nutrition with your doctor to help calm things down. Then back to some strong medication in conjunction with it. Are you still able to take Infliximab or did you develop an intolerance to it?

The fatigue could be due to a variety of things. Common ones are anemia, dehydration, or vitamin B12 deficiency. Have you had your vitamin B12 and vitamin D levels tested? People with Crohn's Disease are commonly deficient and proper supplementation can make a big difference.

With your symptoms and narrowing of the intestines, I think I'd also ask them to test for Small Intestine Bacterial Overgrowth.

 

[Lindy Lou]

Saw my GI today, he has put me on Adalimumab injections plus 20 mgs of Prenisolone. No Vitamin B12 deficiency. Hope the new treatment will improve quality of life. Infliximab was not a problem for me, but Adalimumab is easier to cope with and less expensive with fewer side affects, I hope!

 

[David]

Sounds good We have an Adalimumab (Humira) support area if you want to connect with others on it. I hope it does the trick for you!

 

[Angrybird]

Will keep fingers crossed that this does the job for you!

 

[Astra]

Hiya Lindy
and welcome

Good luck with the Humira, really hope it's 'The One'
Lotsa luv
Joan xxx

 

[Lindy Lou]

Have been on humira for 3 months now, GI has increased injections to 1 per week, bleeding has stopped, but I am always so tired and have to sleep at least twice every day to get through. I am also reducing prednisolone from 10 to none and am finding my joints ache and I have flu like symptoms. Don't feel well at all. Blood tests come back OK. Am not losing weight but have 7-8 toilets per day mainly in the mornings, and cramping pains with loose stools. I would say that since starting on Humira it has made me feel worse. Can anyone help? The worst is the fatigue. I also have pain in my sinuses.

Present meds:
methotrexate 20mgs
Cipralex
Propanol
folic acid
humira - weekly 40mgs

Lindy Lou

 

[Lindy Lou]

I have seen my GI and my surgeon and they agree that I am unable to get any more help from medication and have suggested that I have a pan - proctol colectomy operation. I am willing to go ahead with this but am worried about it and would appreciate any help[ful advice from those of you who have undergone the procedure with your recovery experiences. Lindy Lou

 

[Angrybird]

Sorry to hear you are now facing surgery hun, I have not had this type of surgery myself but do check out our surgery sub forum, there may be some info here for you: http://www.crohnsforum.com/forumdisplay.php?f=71.