Indeterminate colitis and cecum crohns?

[SunnyK]

I am suffering terribly and have done for years with constipation, diarreah, cramps, fissures, hemearoids the lot. I am at my wits end.

I have celiac disease (10 years) I am dairy intolerant and allergic to sweeteners. I have also had a thyroid goiter, and another growing on my remaining lobe!

I have had no end of luck getting any treatment or recognition for my symptoms. Twice had surgery for fissures which haven't worked, because I think, the underlying issue has not been investigated.

I finally get a colonoscopy last month which showed indeterminate colitis in cecum and rectum with chronic fissures and tracking through my rectum. My histology has come back normal and so my gastro has suggested that it could be crohns related isolated to cecum but doesn't know for certain. The appointment was scheduled for April to discuss results but I rang them and the consultant got in touch. However, with nothing more to say about the findings other than they are normal. Can ulcerations be normal? Chronic fissures etc? Constant bleeding? I don't get it? I did challenge this and he has arranged for a scan on my small intestines.

And as for my rectal area, it is not his area and need to go back to the colorectal surgeon. Why would he not refer me to that department in the same hospital i had my colonoscopy. I am so fed up of all this and no one wants to help me or knows how to. I have resulted to the fact I've just got to live like this...somehow.

I've quit my job because I can't function anymore. The fatigue is crippling. The pain is exhausting. Is this how it is now?

S

[Cylarreta]

I’m sorry that you’re suffering so. Have you tried changing your diet? Taking a good sesitivity test?

[SunnyK in reply to Cylarreta]

I took a York sensitivity test of over 100 allergens and it can back dairy. Everything else was labelled green meaning no sensitivity.

Otherwise, I'm very strict with my celiac diet too.

[Cylarreta in reply to SunnyK]

I’m going to take the MRT food sensitivity test later this week. Have you tried an elimination diet? Have you found anything that helps? Aloe Vera juice?

[SunnyK in reply to Cylarreta]

Orange juice and liquid iron helps with my fatigue. Honey and lemon in hot water helps my system in the morning. Eggs are a favourite food with no ill effects. I haven't tried aloe vera juice - does this work for you?

There's nothing that's helped heal my fissures which is the problem that doesn't subside at all. I've had two ops to correct it and it hasn't worked. I can only do a warm flannel or sits bath to soothe but honestly I wish I could have it removed now because the pain is unbearable.

[Cylarreta in reply to SunnyK]

Yes, the aloe juice has helped a lot. You can start with just 2 ounces in the morning to see how you do. I increased mine to 2 oz, 3 x a day aNd did well. Small amounts of Apple cider vinegar helps with bloating and digestion-if that’s an issue. I hope you feel better soon.

[Christy_cd in reply to SunnyK]

I don't know if this will help you or not but I had a series of frustrating tests and all the blood markers look normal, for x-rays it can go from normal to chronic inflammation within 2 months, when tissue removal can be diagnosed properly, have you ever another autoimmune check, maybe you don't just have celiac, and I really understand your feelings, because I also experienced the same thing regarding the lungs, 3 months ago I felt healthy, and now I am faced with a series of tests that overwhelmed me and new diagnosed if I have all the autoimmune diseases that my siblings have (with symptoms that are not 100% perfect because I'm not as bad as them) but the dominant one is Crohn's, now I've been complaining for 3 months coughing and my nose starts to have blood spots, mucus and candida mixed a little blood, because I was examined I looked normal and didn't sound wheezing with normal body temperature, rheumatologist didn't refer me to pulmonologist, because I had started to understand my body's abnormality, finally I checked myself to a physician without any financial assistance from the state, and the result was chronic inflammation in pulmonary respiration, possible pulmonary hypertension and fibrosis, this can be caused by lupus, Crohn's, and liver fibrosis/cirrhosis👈everything I have can speed it up. . Btw I started to feel sick after the COVID-19 vaccine and was exposed to long COVID-19, and I don't know if I also have autoimmune I thought I was the only one who was safe from this that's why I dare to get the vaccine 👈if I had known this would overactivate my immune system ,i would never tried it😒

[Miti333]

Hi SunnyK! I 'm sorry you feel so bad.

SunnyK are your but pain constant or just after your bowel movements?Also do you have many fissures or just one?

[SunnyK in reply to Miti333]

I've had many and two currently, I think. Yes it's constant and has different intensities depending on bowel movements, frequency, menstrual period, how long I've been sitting (driving). It's just horrible and having to explain to people what's wrong too. Particularly employment. After 3 years of it, I've decided to leave employment.

Do you suffer with the same thing?

[Miti333 in reply to SunnyK]

Yes i have a chronic anal fissure but no operation. I have very bad pain after my b.m. Also i have anal skin tags which might be a sign of crohn's.It lasts since april last year. My last calprotectin was 400 but they still think i have ibs. I'm afraid to oparate my anal fissure because it could complicate my situation if its crohn's. Don 't know what to do. I used all kinds of ointments with nitroglicerine, supositories,sith bath,etc. but nothing.How were you after the operations? Thanks for your reply.

[SunnyK in reply to Miti333]

I had two BOTOX injections and skin tags removed. Skin tags could be fissures that have healed and opened repeatedly. I've also had hemearoids banded too. I recovered fine, no ill effects just that it didn't work for me. I feel it's because my issue has not been resolved, whatever that may be. I've been offered a skin graft operation but been advised that it isn't the best. Probably the same advice you've been given. So I'm hesitant.

My calprotectin was 150 but they thought it was because of obvious blood from fissure so did not investigate further...now it seems I should have had colonoscopy because I do have IBD...albeit indeterminate and they still don't know what to do with me. The biggest problem is that gastroenterologists are seperate to colorectal surgeons and so although your symptoms are connected and obviously your rear end and colon are they treat you separately. So I have been left for years to cope with it. I'm so sorry you are going through something similar. The pain is something else.

Also do u suffer with fatigue?

[Miti333 in reply to SunnyK]

Hi SunnyK. Yes i do suffer with fatigue but i had it all my life because have my thyroid removed and i also have pernicious anemia. And of course i 'm very depressed for all the problems.

My gastroenterologist told me is good to see me a colorectal surgeon but i have to go by myself because he didn't sugest me any.

I have to repeat faecal calprotectin this month.

Sunny in which order your issues appeared. Were they first to your tummy or to the but first?

[SunnyK in reply to Miti333]

Well I've always had tummy issues and chronic constipation which then caused the fissures.

I have also had half my thyroid removed. Why did you have yours removed? I've got another goiter on the other side now and they said they would monitor me but not heard back since.

My gastro said ulcerations in the cecum is linked to crohns and so he is going to give me a prescription for a tablet beginning with m. Otherwise he is just calling it indeterminate colitis or non specific IBD. I haven't got the prescription yet but will let you know what it is once I do.

Is this all linked. Why are we like this. We have such similar symptoms.

[Miti333 in reply to SunnyK]

Hi SunnyK. I had all my thyroid removed because had lots of nodules.

Did your doctor tell you if your anal problems are linked with crohn's disease? I'm afraid I have anal crohn 's disease cause all my problems were started there (sorry for my english ). Do you have any pain in your caecum area? Also I have muscles pain and in the last time I have nausea and fatigue after bowel movements.

[SunnyK in reply to Miti333]

Hi Yes I can understand this. Ive also experienced nausea and fatigue after BM but I feel more like my body has gone into shock.

He didn't go into detail about my anal or rectal problems because it is not his area of expertise which is the problem I'm having at the moment. I feel I'm just left without any support. Yeh I get pain in ceacum and other areas aswel as just before I need BM it's really painful and I need to get rid of it ASAP.

I went to AnE yesterday as I couldn't control the pain and even though they saw I had two chronic fissures, bleeding and utterly exhausted I still need to go back to my gp for a referral. I was given Diltiazem hydrochloride 2% too (have you had this?) and lactulose (I'm not sure I'm meant to have it because of dairy allergy but they said it's the sugar not the dairy so I'll be fine) I'm hoping not to vomit as I did regularly when consuming dairy. Also it has awful sweeteners in which I know irritate me but there is nothing else.

What is your treatment for anal crohns? How did they diagnose you? Did you have cobblestone or ulcers in rectum and your histology confirmed crohns?

S

[Miti333 in reply to SunnyK]

Hi. No wasn't diagnose with crohn's. I had endoscopy, colonoscopy, mri and videocapsule and they didn't find anything. My problem started with a pain in my rectum and after a digital exam i experienced lots of anal pain after bm. I had all kind of ointments and supositories and nothing. The pain is worse now. I had it from last April. But all this time i had different symptoms :low grade fever for almost 3 months, pain and noises in caecum area, joint and muscles pain. They say it's ibs and anal fissure. Also i had giardiasis last year and most of symptoms they put on its fault. Even calprotectin 400 but i just feel it's more than this. I also started to take antidepresants from September. Do you know if i can have muscles pain from antidepresants? I asked my doctor and she denied. All of these make me crazy! 😢

[SunnyK in reply to Miti333]

I'm not sure about muscle pain related to anti depressant. I do know from personal experience as I was put on sertraline 75mg that it helped relieve my symptoms of constipation, I feel it had a relaxing effect on my bowel and I went more frequently. So it does have an effect on the bowels but i suppose we all react differently. However, I suffered with Neuro symptoms such as hallucinations, night terrors and auditory hallucinations. So I had to come off them. How long have you been on them?

Giardiasis can become chronic if left untreated. Your fever would signal that you are fighting infection somewhere. Did u take antibiotics for this?

Have you been prescribed Diltiazem hydrochloride 2% for fissure? I've read some good outcomes in articles online. I've also read it's not licensed in the UK and I gather that it's the licensing cost that's preventing this. Although you can still get it prescribed. If you haven't tried it yet might be worth asking your gp or consultant about this. I'll let you know how I get on with it as it's my first day using it.

[Miti333 in reply to SunnyK]

Hi. I use mirtazapine for sleep and depression. It helped me to gain weight cause i lost about 4 kilos last year but i have muscles aches and don't feel to wake up in the morning. Also during my sleep i have muscle spasm like electric shock.

I didn't use Diltiazem ,I used Nitroglicerin with no effect.

Yesterday i went to see a surgeon and he propused me to go to hospital on 28th to operate my fissure. He said they will make me another colonoscopy with biopsies and check anal area to find what it is.

[Miti333 in reply to SunnyK]

Hi sunnyK . How is your treatment with diltiazem?

[SunnyK in reply to Miti333]

Well, I've seen no improvement. Its not an offensive cream and doesnt have any side effects.

But due to the fact the lactulose had a reverse effect on me and I suffered terribly with large stools, constipation for 4 days. I've been in constant pain for 2 weeks now. I'm on codeine which also isn't going to help but I just couldn't sit, lie, walk or anything. Pain unbearable.

However, ive been urgently referred now and got an op for BOTOX on 28th (sane as you) with other colonic transit tests inbetween to find the root cause of all my problems.

How are you getting on? Are you considering trying the cream? Your muscle spasm is that rectal? Like proctalgia fugax? I think that's what get too.

[Miti333]

Hi SunnyK. How your doctor suggested you have crohn's if your histology came back normal?

[SunnyK in reply to Miti333]

He suggested crohns of the cecum but he is unsure. I'm having an MRI for further clarification.

[Miti333]

Hi. I cancelled the app on 28th for operation as I feel better with the anal pain. I had a month with unbearable pain after a digital exam of a gastroenterologist. Now i use aloe vera, i put in a syringe with a canulla atached and i introduce the aloe. I don't know if fissure will be healed but i feel better now.I had that spasms, too specially when i had that pain. And also get constipated and impacted on two days.

What doctor told you the fissure is still there? It 's only one or they're more?

[Miti333]

Hi Sunny K . How are you? How do you feel?

[NL88]

Maybe SCD Diet?