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Newbie who needs some advice!


I have been suffering with various symptoms for about a year now. It started with severe pain in my lower right side and I suffered from alternate constipation and diarrhea. I was hospitalised 3 times in 3 months. I was initially passed around various doctors who didnt know what was wrong with me and once the pain became manageable I was discharged from hospital (they kept trying to tell me I had pelvic inflammatory disease which turned out to be wrong!!).

Then about 5 months ago I had an awful time. I was going to the toilet about 10-15 times a day and I either had terrible diarrhea or I felt like I really had to go but was constipated. I couldnt leave the house cos I was scared I wouldnt be able to find a toilet if I needed it!

I was refered to a specialist and they ran various blood tests and gave me an MRI scan. I got my results about 2 weeks ago and was told that I have inflammation and narrowing at my ileum which is consistent with Crohn's disease. This apparantly it why I suffer with pain in my right side - I also can feel a lump where the pain is.

The doctor told me I have to have a colonoscopy to confirm the diagnosis (although he said he is pretty certain it is Crohns) so I am currently waiting for an appointment. I am now taking Pentasa 500mg 2 tablets 3 times a day and iron supplements (for my aneamia).

I have some questions:

* I am pretty much constantly bloated - even if I only eat small amounts. My stomach hardly ever feels hungry but the rest of my body gets weak if I dont eat anything (I get headaches, feel dizzy etc) so I have to still eat to stop feeling weak - but this then makes my bloating worse. Does anyone have any suggestions on how to deal with this cos it really gets me down?

* I constantly have cuts/tears around my anus which make it even more painful to go to the toilet - is there anything I can do about this? My anus is also itchy a lot of the time - which is horrible if im in public - does anyone else have this?

Thank you so much for any help/advice (im sorry this is such a long post!)

Hi Vicky and welcome,

Sorry to hear you are having a rough time.

One thing that came to mind that may help is the iron thing. I was given iron a couple of weeks ago for anemia and when I started taking it I also started getting this constant feeling of food being undigested in my stomach. Like my dinner would still feel like it was there HOURS later and even during the night. I have had this before but only occasionally and this became every day. I stopped the iron and this feeling stopped as well.

It wasn;t so much a bloated feeling but a full feeling but I was hungry at the same time. I am seeing my GI Monday and hopefully may come up with an alternative for the iron.

Hope you get to feeling better

Thanks for your suggestions.

I am based in the UK - so will have a look on the web for that cream - thanks!

I dont think it is the iron ive been taking thats causing the bloating cos I was suffering from the bloating before starting the iron. I been thinking about a liquid diet - I feel like me insides just need some time off! Sometimes I can eat a meal and then feel full for 24-48 hours - its just depressing!

I have read some info about peaopl who have gone into a 'remission' from their symptoms - is this common for most people or am I just too hopeful?? I dont think I remember what it would be like to feel 'normal'!

Thanks again!

hi Vicki & welcome :)

i think the way you've described how your tummy feels and acts is really typical of a lot of us when our Crohn's is/was flaring. it could be that there's scar tissue in that lumpy area you can feel and that could be really hindering the passage of solid foods that you're digesting.. and at the same time solids might be making it worse.

i totally agree about giving your tum a rest, and going onto a much softer or even liquid diet.. Peaches' suggestion of nutrition drinks is an excellent one.. & don't forget that if you're passing liquidy motions you could well be dehydrated, so it's worth buying some electrolade or dioralyte over the counter and having a cup at least once a day whenever you have the runs.

Crohn's 35

Inactive Account
Hi Vicki, have you had your blood levels checked for B12 and Potassium levels? The can make your body feel ill even more because of absorption and lack of certain vitamins. A colonscopy does show alot more of how the disease has progressed. As dingbat says scaring in the area will cause a feeling of constipation as it could be narrowed. Remission is hard to obtain but alot of people have and find the right drug and or diet that helps them. Avoid dairy and high fiber foods, causes bloat and pain. Sorry you are having to be here but you will get alot of support from others here. Even questions you think may be "stupid" there never is a stupid question and we all have embarrassing problems too. Welcome to the forum.
Hi Vicki

I am in the Uk also and I dont think get as much info here as in the US.

I have had Crohns for a long time but diagnosed in 2000 and although it has been and is tough you feel bad and think you ll never get better but you will. Once you ve had your colonoscopy the docs will have more of an idea of what they can do for you and what treatment to give you.

The Pentasa can help but you will get other treatment as well. The way you feel is exactly how I felt alot of the time before and after I was diagnosed and with Azathioprine I was great for a few years and even feel hungry now. I am getting worse again but they think I may need my first op. Your anus will be sore and they can also give you meds for that. I have suppositaries now which arent pleasant but if they help I will do them. Get anusol for the itching and pain it really helps.

Hope you feel better soon and keep in touch.

Where are you from and how old are you?

I am 32 and have 2 kids and as I live in West Scotland.

Take Care
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My Butt Hurts

Hi Vickie! Welcome to the forum. I have to agree with Peaches on the Calmoseptine. It is amazing stuff. Do a search for it on here if you want to see what everyone else has to say about it. If I remember correctly, the other UKers couldn't find it at the stores but were ablt to order it from Amazon.com or medicinenet or another site like that. Even eBay has it I think.

Some people on here use a prescription steroid foam. I don't know if the cracks in your bum aren't healing and they aren't soothed by the calmoseptine, if you might need something like that. I have felt like glass shards were in my butt and used the calmo and it was healed by the next morning. Def worth a try.
Good luck and welcome again!
Welcome to the forum Vickie. I hope you are able to find Calmoseptine. It works miracles. Wishing for you to feel better soon. Push for more testing if you don't start feeling better. Don't let the doctors push you aside.
thank you

Thank you so much for the advice.

No Ive not had any blood tests for potassium levels etc - I was only tested for aneamia.

I am still waiting for a date for my colonoscopy - I dont know what its like in the USA but it seems to take forever to get appointments for things over here in the UK!

I have been a bit concerned that they wont find anything when they do the colonoscopy (especially if the tablets help) - I dont want to go back to square one cos its took a year to persuade the doctors something was wrong!

I am definetly going to take all your advice on the diet - I have always eaten a lot of bread based things and a lot of dairy so I think I should change that!

Thank you again! Its nice to be able to 'chat' to ppl who understand - cant really talk to anyone else cos they dont really understand what its all about and dont really know how horrible it makes me feel!


PS Julie - I live near Manchester and im 25
Hey Vickie,

Totally feeling your pain on the itchy butt - it's a nighmare! If you can't get the calmoseptine, or just to tide you over till it arrives, get yourself a tub of sudocreme - its brilliant.

As for the diet - I had to cut dairy and wheat straight out, and I would agree wih you to cut it. I find complan do quite a nice coffee flavour and the chicken soup is very palatable - I stick to liquids, smash and grilled fish - I think it helps.

Good luck and keep us posted.

Hey Lishyloo

I dont eat Wheat or Dairy and it def works. I have been having real touble recently so I need to look at a smooth diet like you but not quite sure where to get complan. can you advise me. Im not seeing specialist again until 4 Dec. NHS waiting is not great and they cant really give me any results until ive had this.